# Fibro Support - "BUT YOU DON'T LOOK SICK"!



## Caitedid

Here's the first post. Mods- can we get this stickied? A bunch of folks up on the Families page were asking for a group. Thanks!


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## nduetime

Count me in!


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## Caitedid

I will admit the thing that most turned me off on other groups was that it seemed like folks were competing to be the sickest. Maybe we can not do that here? I think folks should feel free to whine sometimes, because this is sucky, but then pull up those boot-straps and get going!


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## countrysunshine

Ok. In the other thread there was a pretty good description of adapting, I think. Today is one of my days of doing that.

I work a rotating shift. As I came off of a 14 day stretch where I switched shifts three times and worked 140 hours I developed an inner ear infection. EVERYTHING was nearly impossible. I managed work (thanks to my husband driving me) and not much else.

Yesterday was the first day I felt close to normal. I "caught up" on most everything I could. Today I am paying for that. 

So, I am "resting" for a little bit and looking on here. I am heading back to my sewing room after this. I was smart enough to tell my husband NO when he suggested he pick the rest of the garden for me to process today. We will pick it tomorrow afternoon and I will work it up on Monday when I should be back in better shape.

This is not the ideal situation and it really irritates me to not be able to do it all. But I have learned I can do more if I make trade offs like this.

That is my "whine" and my input for today.

CS


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## Our Little Farm

Add me to the group but I am mostly doing ok. I am very very careful about the foods that I eat, exercise daily, and take some meds that really seem to help. 
There are days when I don't do well, but they are few and far between. 
I've come a long way from a year ago.


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## ginnie5

This week has been a rough one. I loaded and unloaded 2 truck loads of wood (big rounds not split) the first past of the week. Yesterday was the first day I could move without hurting and I went overboard cleaning. Today I'm paying for it. I ache all over and I stirred up enough dust yesterday that I'm still sneezing. I think I'm going to make a pot of soup and call it a day. And that is sad. But tomorrow is another day! I just have to force myself to not do everything in a day. It really is ok if I break down deep cleaning aroom into 2 or even 3 days worth of work.


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## Caitedid

I'm still in the process of figuring out all of what's going on- dr is thinking fibro and RA. I work on two farms, meaning 7 days a week averaging 10+ hours a day of hard physical labor. Made me feel really good that she (Dr.) recognized that I can tell the substantial difference between normal "I work a lot" tired and "I fell asleep in the nasty farm bathroom" tired. 

My big one for this week is not feeling bad about saying no to anything I need to turn down to take care of myself. I don't have a family to take care of, but I do have friends and animals to deal with. I canceled plans three nights this week to stay home and rest, and it's been amazing! I'm also looking for someone to walk my dog on days that it takes all my left-over energy just to get him fed. It is so wonderful though to know that I'm not lazy or losing my mind, so that almost makes up for it.


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## Freeholder

I don't have an official diagnosis, as I don't have health insurance and save Dr. visits for dire emergencies. But my mother was diagnosed with fibro a couple of years ago, and I'm pretty sure I've got it, too, although not severe yet. Thankfully! Also have RA. I'm finding that diet helps a LOT with controlling the symptoms -- I have to stay away from all the grains and sugars, and limit other carbs (like potatoes) severely. Along with that, I'm taking 4,000 IU of Vit. D3 a day, and that helps immensely. I really wasn't expecting to see any difference when I started taking the D; was kind of shocked to find that it makes a significant difference. 

I've learned to ration my time. If I do too much, I'll be down for at least a day, sometimes two or three days. If I succumb to temptation and eat something I shouldn't, I may be down for two or three days, also. But as long as I'm careful not to overdo, and to eat right, I do fairly well.

Kathleen


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## nduetime

From what I have read here everyone is learning (like me) the hard way. Saying "No" is one of the most important things I can do for myself. I was always the one everybody came to for help. I have finally learned. Have any of you heard the "Spoon theory"? For those who have not I will tell it the way it was told to me. 

Every person has a certain number of spoons they can use each day. "Spoons" are our energy. A normal healthy person has say about 100 spoons. Someone who has a terminal illness they are fighting has maybe 3 or 4. A person who has a chronic pain illness such as Lupus, fibromyalgia and arthritis has say 20 spoons per day. If you can get up in the morning, shower, do other personal hygiene, and get dressed, you will have used a spoon. Lightly clean your home (make bed, do dishes, make a meal or two, vacume and dust, and you will have used 3-5 spoons. Feed all the critters (let's say a dozen, not counting chickens)water them, clean a few stalls, gather eggs, care for any health issue etc and you will have used another 5-12 spoons. You can see where this is going. When you have used up your spoons, you are done. you are sore, tired and hurting all over. Maybe you had a big job to do and had to borrow from tomorrows spoons. If you use too many spoons you cannot sleep because you need 1-2 spoons just to relax your body enough to sleep.

I use to be quite the perfectionist. House was spotless, barn was spotless etc etc. Now.... i try to work on the things that really matter to me. If my in-laws are coming over. i let the barn go a bit and really concentrate on the house. (They would not be caught dead in the barn!)I have to admit (insert blush here) my barn is usually neater than my house...not cleaner, just neater. 

Long story short, the best things in life still await and I am going to hoard some of those spoons to enjoy them. So...friend, relative, neighbor etc if I cannot jump to do something for you, it does not mean i do not care, i just might be out of spoons.


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## Madame

Any chance we can open this up to all of us who are coping with chronic illnesses?


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## ChristieAcres

Recently, the weather was my trigger. I've developed an unusually high tolerance for pain, which is great in some ways, but not so great in others. That means, I can over due it big time! It sounds like I am in good company here, reading these posts...

I treat my FMS completely with diet, good clean water, and exercise. The latter needs to be stepped up, as the weather will be keeping me indoors more often. I have an elliptical and also do a T-Tapp program for my Winter routine. DH & I are hikers, so try to stay in shape all year around for that. This past few months, I worked much more in the garden, and other work around here. So, tomorrow marks the 1st day of my Winter routine, which I will be endeavoring to make my year around one!

On the diet, I have done a lot of experimenting and have found, in my case, that I can tolerate honey with no problem. NOT sugar! I can also have potatoes, but not pasta, but I prefer them anyway. I avoid empty carbs, don't eat junk food at all, no pop, no fruit juice, don't drink alcohol, don't smoke, and don't take any type of drugs. If I am religious about my diet, I can have a sugar type treat once/month without any issues. I eat almost completely organically, drink Kefir daily, with few exceptions, and also eat 6 times/day (2 snacks and 3 meals).


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## nduetime

I went on trail rides for hours each day last weekend. Boy, I was huurting on Monday! I did the bare minimum that day and the next, soaked in the hot tub a couple times a day. Hot water up to your neck does wonders! We feel it is a physical and mental necessity around here. After a couple days of taking it easier i was able to get back into the swing of things again.It was so worth it. I used up a lot of my spoons but i loved every minute of those trail rides with my niece and my mustang.Beautiful fall weather in the forest preserve. It made you feel alive.


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## nduetime

I guess you need to talk to the Mods about that madame. 

on the other hand, How are you! I have not seen you in forever! Still spinning? I wish you all the best.


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## nduetime

Wow! lorichristie you put me to shame with your regimen. That is awesome. The carbs and sugar are something the Dr tells me to get rid of too. In addition to the excess weight...I think they would probably go hand in hand. I love whole fruits and vegetables but unfortunately i love everything! Not so much with the junk food. just real food. I have vowed to do better. Guess i will start on Monday and see where I am a month from now. no time like the present!


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## Caitedid

Madame- I think we're fine with opening it to other chronic illnesses.

Had a great day yesterday(need a sarcasm font). Got lightheaded and tripped when I normally wouldn't have, ended up with 16 stitches in my arm. Told the ER doc that I just tripped, since I know full well why I was dizzy and don't really need them to run a ton of tests.

Otherwise, feeling better energy wise. Worked by myself a few days last week which was nice, because I can take breaks when I need to more easily and listen to music. Also, I canceled a bunch of social plans, which I think makes me a better friend. Seems like folks would rather that spending time with them not make you sick and cranky!


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## nduetime

Ouch Catedid! Hope your arm heals up quickly. That is a bummer with all that you do. Totally understand the thing with the ER doctor. They sure like to run a lot of tests etc even when we know full well why something happened or what the issue is. $$$$$!


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## countrysunshine

I would be interested in seeing a list of what some of you are eating to control your symptoms. I had already changed my diet a lot to help with my migraines. 

I really wonder if my exposures at my job make everything worse for me. Lots of dust because we manufacture a powdered food ingredient and I work in the lab.

BTW, I understand about the ER. It is such a shame we have become such a lawsuit happy society that doctors feel they have to work us up even when we all know the cause of such incidents. I had the same sort of thing happen while having a migraine. Finally convinced the doc the migraine was nothing unusual and I just happened to do more than I should have.

Maybe this forum should be for the "But you don't look sick" diseases!


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## jwal10

Sweetie takes 3 drugs and I think some are contributing to the "problem", 1 is a antidepressant, 1 for the fibro and 1 is a muscle relaxer for her restless leg. Her restless leg wakes her at night, doesn't get an unenterupted nights sleep which aggrevates her migraines. I too would like to hear what other people are doing. Sweetie has a diagnosis but cannot get any health insurance or disability. I worry about her quality of life in a few years. Many days are "lost" as she barely functions 5 out of 7 days some weeks, good weeks 3 out of 7. She was diagnosed 5-6 years ago, wasn't doing well at that time, went through 3 therapy sessions, finally I got her into a pain management program. The meds have caused her to gain weight, hard to keep on any real schedule, her Mother is ailing and failing quickly (stress is really bad for her) She knits, reads from kindle on this cell phone and watches TV. Sleeps until 11:00 am, naps 2-3 times a day, goes to bed at 11:00-midnight, sleeps several hours, then the restless leg kicks in, gets up, works a puzzle, or knits and hits the bed again about 4 AM. I usually get up about 5:00 every day. It is so hard to see her quality of life fading fast, she will be 53 on December 10th. She watches what she eats (chocolate is her vice) eats 5 small meals, no snacks, no junk food (she sticks to the prescribed diet very well). We eat from the garden, little red meat (once a week) fish , fruit and vegy's. No sugar in the house. My diet is more restricted then hers so we--don't buy don't eat--. I make most meals, simple, whole, plain good food. Any more suggestions besides what has been discussed and now discussed here. Sweetie thinks she can tough it out, ok, until some little thing throws her off. It is a very day to day thing, never know until she wakes up about what we will do for the day. I have retired to try to help improve her day to day quality of life by doing all the chores and being there for her Mom so sweetie can focus on HERSELF....James


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## nduetime

From my own experience and from tons of research, moving is one of the number one things to do. You just have to keep on moving. I am not talking about running a marathon, just staying as active as possible. I try to avoid sitting or laying around a lot. i do much better with the stiffness and muscle cramps/aching when activity that does not exert me overmuch but continuously for short periods of time. If i sit at the computer for a few hours, or watch Tv, read a book etc i can barely move. Then I have to start my morning flexibility type movements all over again. I f I get really sick and have to spend a day in bed it takes me over a day to be able to move normally (for me) again. The best thing for me is stretching exercises in my hot tub or at the Y. Hot water therapy is a great tool as long as you do not overdo. I also swim in the summertime...everyday. I have really felt it since we had to drain the pool for the winter.


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## countrysunshine

My father-in-law gave me his hot tub but my husband wouldn't hear of it. Was sure it uses too much electricity and we couldn't afford it. I roll my eyes at that. People on here would stone me if they saw some of what I waste money on (but I don't go in debt to do it).

I do move a lot and the marathon analogy is funny. I keep walking half marathons and my goal is to do a full marathon. That is the main reason I am taking the antidepressant approved for FM. It did get rid of the burning in my feet and make it possible for me to train again but other side effects stopped me again. Now I think I am going off of it again.

I know my diet is not what some of you are doing. Working 12 hour rotating shifts contributes to that. When I am at work and get a migraine or get sick I drink a Dr. Pepper for the caffiene. I admit I cannot imagine a time when the FM will be my primary concern. I always treat the migraines at the expense of everything else. But, I am willing to try to learn better dietary habits. So many things are gone already due to being migraine triggers. The things I miss most are pizza and donuts!


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## Madame

nduetime said:


> I guess you need to talk to the Mods about that madame.
> 
> on the other hand, How are you! I have not seen you in forever! Still spinning? I wish you all the best.


I'm doing fine. I'm losing fine motor skills, so nowadays knitting and spinning are like walking through 3 feet of mudsucking swampland - I can do them, but not easily. The joy is gone.

So, I gave away my knitting stuff, sold my wheel, and am buying a 4-harness loom from another HT'r- she's bringing it over on Saturday. :bouncy: Weaving is gonna be fun!

What's up with you these days?


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## beccachow

Today was a bitter day with a great ending. My job as an EMS Paramedic Supervisor in one of the busiest EMS systems in the country can be overwhelming. Today, I got hit with every conceivable issue from staffing problems, payroll, damage to two medic units from unknown origin, an accident with another medic unit, an unexpected service call from an airconditioning gy who reported that the house captain had reported an odor of burning from a unit that I knew nothing about, much less where it was in the firehouse, plus EMS runs, and calls from every medic with issues, plus a medic inspection. At one point I had 9 windows open on the computer for 9 seperate pieces of paperwork that had to be done in regards to all the messes that struck today. I came back after a run and looked at my desk...papers strewn everywhere, sticky notes from the medics, sick calls that had to be adjusted on the schedule, accident reports...I felt like crying, my fibro brain was so foggy I had a hard time getting a grip on the moutains that had appeared before me. But...

I laid each paper into groups that were alike, chose the most important stuff and tackled it in priority. I got a grip on it all and turned it all into manageable piles, then tackled each issue according to importance. I had to stay after my shift to finish one thing, but at at the end, I DID IT ALL! Take that, Fibro Fog! At some point in the insanity, I stopped stressing and said, "Hey, I can only do so much." Once I said that out loud, I felt the stress lift and could get it all done, after all.

After work I stopped at the store, no WAY was I cooking. Rang up my purchases on the self check out...and remembered I left my bank card in the car!!! Went to get the bank card...and then left my keys at the counter. Fibro Fog announced, loud and clear, "Take THAT, becky!" LOL!~


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## nduetime

Oh Becky, lol. that kind of day would have me pulling hair out! 

Madame, sorry to hear you had to give up things you loved to do. Weaving sounds like a ton of fun though! Post some pics of that loom when you can.

Everything is going well for me. I have four new horses coming in and the stable work just gets "deeper". We are full again when they get here, so i do not complain. I manage. Most days I have a lot of pain but I keep going. Not going to let it get me down, slow me down...yep afaaid so...but i am going to keep going. I have a pretty darn good system worked out for chores.

countrysunshine - can i ask which drug that was? I know there is one but i forget. Is it pristique? that is what i take. It does help me from wanting to crawl into bed and pull up the covers. i would really like to find some help for the chronic pain. That is what usually wears me down. When i am in the middle of a flash (like right now) it does get to you after a while.

I will be out walking tomorrow and when i get sore i will think of you countrysunshine, doing those maratons, and push for just a little bit longer and farther.

I like that this group will be able to inspire and encourage each other as well as offer ideas and alternative health care tips.


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## Caitedid

Thankfully, in a roundabout, vaguely unpleasant way, I've been blessed with the time I need to catch up on things that haven't been getting done. My milking boss kicked me off the farm, then had to go back to the Dr. yesterday for antibiotics, so I'm off both farms through tonight.

Upside, I finally have time to catch up on housework, paperwork, and the like. Finally convinced myself that I should still apply for the farm grant I've been working on, even though I don't know where I'll be in two years.

Now that I'm getting more rest and taking better care of myself I'm realizing how punky I've been feeling, which is definitely a nice change.


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## countrysunshine

I was on Cymbalta but I quit earlier this week. The vertigo was just too much. Yesterday I woke up feeling less foggy but the joint pain and burning in my soles and palms were back. It is a trade off.

My tip: If you like sewing but find yourself getting stiff from sitting, put your ironing board in another room or even on another story of your house. I moved mine into a spare bedroom simply so I would have more room but it really helped me physically, too. 

I read on line about tips to minimize movement but I try to keep mine maximized. That is also why I keep my washing machine in the basement, hang my laundry on the line and keep most of my pantry downstairs. At times it is more than I want and I will wait to do a trip but I really think it helps most days.

Going to go hang my sheets on the line because I love line dried sheets. Had to wait on them to finish cutting beans this morning or the dust would have made the washing pointless!

Then off to my sewing room. Have great day and I hope you are able to achieve your goals for today.

CS


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## beccachow

Today finds me VERY unmotivated...I usually can accomplish SOMETHING before my overnight shifts, but today, nada. I simply HAVE to get up there and clean out the rabbit's cage.


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## tailwagging

are you'll talking about Fibromyalgia? if so I have had it since I was 17. so that 26 years.
for years they said it was all in my head. the first two year were the worst. had to wear hightop shoes just to walk. I was on all kinds of meds, gold shots. physical therapy... for years. finely said to heck with it and stopped all meds. even my thyroid.
found that wal-mart Excedrin worked the best for me. it didn't take away all the pain but the sharpness. learned not to over do on my good days and slow down.
I still hurt on rainy days. or when it gets cold but I am in SC. processed food seem to trigger mine and/or sugar. what gets me is i can get a really big bruise and not even know how or when I got it. its all in a day of pain. oh and a too many Pepsi can keep me from being able to walk.


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## nduetime

tailwagging, that is very interesting about the bruising. i have always gotten huge bruises and hardly ever remember what i did if anything.I wonder how that plays in? i agree with everybody about learning what is overdoing for yourself. Everybody is different. For me sitting or stasnding in one place for too long a period of time is a no no. Sometimes that period of time can be really short! lol I might try the excedrin as i have nothing for pain, thanks for the tip on that!


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## tailwagging

not the regular brand name Excedrin but wal-mart brand. why I don't know but it works better.
I think my bruises are because I now have a very high pain tolerance. so I don't notice pain that others would. 

mine seem to have started when we moved to GA. i didn't like the water so drank a lot of peach soda but then again I had just had a c-section with my first child (yes teen mother) after 29 hours of labor on pit. so who knows what started it all.


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## Caitedid

Does anybody know how to change the title of the thread? Somebody suggested changing it to include all the "But You Don't Look Sick" diseases. Seems like since they share a lot of common themes that would be okay. Thoughts?

Neighbor guy told me last week I just need to get more sleep. I took it in the spirit it was intended, rather than just smacking him. I know what he meant was that he doesn't understand the diagnosis, but he does want me to feel better, and for him that means I should get more sleep. At least this whole thing is a good exercise in being zen!


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## beccachow

I think only a mod can change the trhead, I LIKE that title "But You Don't Look Sick."

For me, the pain is manageable and I can work through it. It is the exhaustion and fog that get me, but that also goes hand in hand with the Chronic Lyme. My brain says, "You HAVE to," and my body says, "No way." 

Country Crock in the cabinet, anyone?? That was my slick move this morning.


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## Caitedid

I just chopped almost 10" off my hair, as I just couldn't handle watching it fall out in clumps anymore. On the upside it's not nearly as thick as it used to be, so I can wear it shorter without it just going straight sideways. Also, a lot of mornings my hands, arms, and neck hurt too badly to try to deal with it. Never thought I'd cry at a haircut, but that just did it.


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## marytx

Have you had your thyroid function checked? I (accidentally) watched a Dr. Oz this week and he says a bad thyroid causes hair loss.

My son has fybromyalgia, so I am interested in what others have found helpful.


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## jwal10

tailwagging said:


> are you'll talking about Fibromyalgia? if so I have had it since I was 17. so that 26 years.
> for years they said it was all in my head. the first two year were the worst. had to wear hightop shoes just to walk. I was on all kinds of meds, gold shots. physical therapy... for years. finely said to heck with it and stopped all meds. even my thyroid.
> found that wal-mart Excedrin worked the best for me. it didn't take away all the pain but the sharpness. learned not to over do on my good days and slow down.
> I still hurt on rainy days. or when it gets cold but I am in SC. processed food seem to trigger mine and/or sugar. what gets me is i can get a really big bruise and not even know how or when I got it. its all in a day of pain. oh and a too many Pepsi can keep me from being able to walk.


Sweety uses Bayer back and body, cheapest at BiMart here. She bruises and never knows what happened. Bad on top of feet, hands and on lower legs. Rainy days are bad but cold dry is ok. Yea I know this is Oregon. No sugar, pop or processed foods. Vinegar and honey seems to help along with rose hip tea. Never over do, just push a little each day. Stairs and steps are a no-no. Moving a lot and work-height level changes often, help. She knits in a swivel rocker, works on puzzle at bar height. Then cut and chop vegys standing at counter height, etc....James


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## jwal10

Caitedid said:


> I just chopped almost 10" off my hair, as I just couldn't handle watching it fall out in clumps anymore. On the upside it's not nearly as thick as it used to be, so I can wear it shorter without it just going straight sideways. Also, a lot of mornings my hands, arms, and neck hurt too badly to try to deal with it. Never thought I'd cry at a haircut, but that just did it.


Sweetie was there 5 years ago, she couldn't do her hair on bad days. Said it felt like it was just pulling all the time. Her hair started thinning 3-4 years before. Gained weight on the meds. Current meds keep weight stable, she says she needs to lose 15 lbs. Many days I have to help her with her shower, help dress her and brush her hair. Good days she gets along OK, even taking short walks, bad days, not out of bed until noon, 15 minutes of exercises in the spa and she is ready for a nap at 2:00....James


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## SquashNut

I've been taking calcium with vit d this last few days and feel alot better.


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## ginnie5

I'm interested in foods that help too. I usually do try to avoid processed foods and sugar. This week though has really kicked my rear. Just the sheer stress has me down. I have taken naps the last two days and am still barely moving. DD asked me several times today if I was ok as I looked really tired she said. I'm forcing myself to stay up till 9pm though.....if I go to sleep earlier I will be awake at 2am. I haven't been able to go walking at all this week either and I can tell a difference. Hubby took care of that though....he bought me a treadmill this weekend! Now even if its raining or just too cold I can still walk. So I'm hoping that taking it easy for a few days will get me back to "normal". I'm planning on taking the kids to the mountains Wednesday to get apples.


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## Caitedid

I'm feeling a bit less wiped out. Seems like a lot of it is making a point to eat a tremedous amount of protein and complex carbs, especially at breakfast and lunch. Eating black bean burritos on whole grain tortillas plus yogurt at least once a day, seems to be helping. Also, making sure I'm in bed by 10 and asleep by 11 or so. My big one is that I'll stay up too late reading or working on something, then be beyond dead the next day. Have been having a lot of muscle spasms in my hands, but one thing at a time. Would rather be awake than not hurting, if I have to choose.


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## Caitedid

Do you keep a log of symptoms for your provider? I feel like it's a problem that if I happen to see them on good days, they don't get a full picture of what's going on.


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## ginnie5

Finally this morning I feel better! I'm thinking my biggest trigger is stress. Last week was rough! Yesterday I taught SS and came home right afterwards exhausted. Got lunch on the table and didn't even feel like eating. Instead I came in the bedroom and fell asleep. I slept so soundly....in the middle of the day, that I didn't even hear dh come in and get ready to go to the store! I even slept all night last night. My hips hurt a bit this morning but it is the usual thing until I get moving. My arms are not hurting and I'm not tired already. Good thing too as I have to take dd to get her permit today..........yet more stress!


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## ginnie5

Caitedid said:


> Do you keep a log of symptoms for your provider? I feel like it's a problem that if I happen to see them on good days, they don't get a full picture of what's going on.


I have not seen an md......just my chiro but no I don't.


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## Karen

I edited the title for you; however, there's no way to open it up to everyone on the site since all threads are already public. I did sticky this so it's easier to find.


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## Caitedid

Thanks Karen!


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## Caitedid

Leaving on my trip to Honduras tomorrow, really worried about having to be able to keep up with somebody else's schedule so much. Hoping that since I'm the youngest on the trip by 30 odd years that should slow everybody else down a bit! :teehee:

Hope everybody else is doing well with the weather changes and all!


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## barnyardgal

Have any of you guys/gals ever been diagnosed with polymyalgia?? drs. says this is what i have but i don't agree as i hurt ALL over...it is similar to fibro though they say...

This weather change is killing me but i keep plugging along..today i burned leaves & been getting ready for a hay ride/hot dog roast tomorrow night,can't give up!! pain pills & prednisone help though,that's about all for me..


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## Caitedid

Just got back from Honduras yesterday, was very glad there were a lot of older folks on the trip so my lack of energy wasn't quite as obvious. Went straight from the airport to the Dr., where she reviewed all my labs with me, then ordered tests for lupus, RA, and Lyme's. Should have results by the end of the week, so that's good.


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## rainy5

Green tea for energy The good stuff from whole foods organic. twice a day. Apple cider vinegar organic braggs I use it has the mother. That helps with my joints and aches. IT has macro nutrients in it. For those of you with the sugar issue. Go buy some organic garlic and use olive oil and put it in the oven for ten minutes on foil. It will kill of the yeast. take garlique everyday also and do your best to stay away from sugar. I am like lorichristie eating organic keep a food log stay away from foods hat bother you. NO cipro ever! Exercise daily and light massage when having a flare. even if you ride a staionary bike two minutes and build up. It will hurt at first for a few weeks you must work threw this. don't overdue it. just two minutes for the first two weeks, then three. you get the idea. Tons of good clean water not bottled water. I was really bad couldn't even walk the bursa had swollen in my hip so bad. I am about 90 percent and you must stay warm in winter. hot tubs and warmbaths. Buy a good jacket and long johns. I wear them in my home even. For madame try soaking your hands in warm water it helps with the stiffness.B complex from whole foods 9.99 for 60 day supply and vitamin d. Stay away from processed foods and preservatives. If you ever saw the food movie and what is in our food you may realize that their is a ton of pestcide in our foods. I am allergic to pesticides, preservatives. It manifest itself threw pain and swollen joints etc. Then I have a slow gut. So I drink plenty of water. I was so bad at one point I could walk work or even are for myself. I am off all medicines and had a baby and he is healthy. MY hip is good as long as I ride a bike or walk. I was even rowing an erg for 40 minutes a day before the baby. Someone hit us a a red light in the car and I am rebuilding a little bit. I know the path I need to go on. So If I an help anyone just ask. MY doctor speaks all over the world he is very well known for fibro. He cannot believe the transformation. He wishes all his patients had my determination. you can use lidocaine patches and thermacare for pain and motrin to help with your journey to be stable. I weaned myself off my medication but this must be done very carefully. I had the shakes and some flare. I have a feeling it was affecting my liver. I went from two pills down to 1 and 3/4 and then the following week to 0ne and 1/2 and one you get the idea. I even did quarters for two weeks. I hope this helps someone remember you have nothing to lose and everything to gain. Get off the steroids they are a false feel good and kill your gut and deplete your bones. I was so bad at one point I would fall asleep so fast it was crazy. I worked my way from a bike to the treadmill to a rower or erg. The erg is the best after a while it stretches the muscles out good and keeps you feeling good. The rower must be done slowly. two minutes and warm heat afterwards or a bath. No pepsi no soda no ice tea with sugar. water and Cranberry juice lemon water and green organic tea. start with one cup a day with very little honey for taste. I had injections all sorts of pills etc. you name it. Just try some of my recommendations you will feel better.Sometimes I find that it is allergies making me worse and I take a zyrtec not zyrtec d. It will take away joint pain. allergies can mainfest themselves this way. I have had cramps, vomiting, stomach pain and joint pains muscle aches etc. just from a food allergy instead of hives. I have over active thyroid.


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## rainy5

I have had positive lyme, chronic fatigue, epstein barr. They check me for lupus, cancer. etc. I know the pain and sleeping all the time the brain fog you feel. Try all of this slowly. don't over due and don't start all of it at once. start with the b complex, vitamin d a few hours later. The fresh garlic warmed in olive oil,I don't eat anything raw because of salmonella etc. then at dinner the braggs vinegar just a teaspoon with water. After a week add the green tea. If you eat a food and you hurt a few hours later drink a ton of water and try a zyrtec. I also don't mix zyrtec with green tea. They are hours apart and check with you doctor if you are on medicines and with drinking green tea it doesn't mix with some medicines. I am not talking motrin I am talking pain killers and or fibro meds. You an also go over to we use coupons and look up fibro group and join. you can complain and it is well received by me and my friend and others. she has multiple issues, lupus, etc with her fibro. I also have had massages when I get bad and sometimes after starting a working out and she does my neck and thyroid. I found a place seven years ago and she is every ten you get one free and it's thirty dollars for thirty minutes. I had to start off slowly light massage and I am not afraid to tell her too hard. I haven't been going as much with the economy and I go now every two months or so. You can feel the difference after a few visits and some people have felt the difference right after. I do now. It pushed all the toxins out that build up and the muscles aches. I have lost tons of hair apple cider vinegar helped with that.


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## rainy5

My husband has migraines and they run in his family. He has been able to get off all medicines and just uses zyrtec and vitamin d and b complex. He has had really bad ones vomiting etc. His entire family was plagued they all use zyrtec and b complex. If hubby misses a day. He gets one. Also watch for triggers.


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## ChristieAcres

Rainy5- I eat my own Organic Garlic just about every day. You posted great info!


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## rainy5

Thanks ! I just hope it helps someone. I went for a walk today and later tonight I will ride my bike for twenty minutes. I am trying to get completely stable from the car that hit us. I will never let myself get that bad again it was a long road but it can be done. Muscles have memory and they are remembering the bad and you must retrain them to remember the good my doctor told me. It is very true.


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## Caitedid

Got a call from the doctor today that they're referring me to a rheumatologist up at Mayo. Apparently all the new tests have come back negative or inconclusive, but my dr. does believe that there is something wrong, so I'm hitting the big leagues.


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## whiskeylivewire

I just found this group, yay!

Some days I can't decide if it's the fibro(diagnosed when I was 19 by a neurologist and later by a rheumatologist), the bulging disc(s) in my back or the hypothyroidism(I'm on meds for it and show that my levels are "normal" but I sure don't feel it.) I'm tired. All the time. And I can't sleep(hence the reason I am typing this so late). 

My diet, well, sucks. I get to go grocery shopping on the 12th so I intend to buy better food for myself and my family. I'm 60 lbs overweight. I'm depressed, all the time. 

Some thing has got to change that is for sure. Losing weight is my biggest thing I need to do to feel better and therefore eating better is the biggest thing I need to do. I'm 34 and feel 80.


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## rainy5

Caitedid I hope you find your answer but don't get to excited. I have been to so many of those specialist. they have checked so much and still it baffles them. one minute my test for von wildebrands comes back and then they run another and it negative. MY lymph nodes will sell and test will come back bad and then they will be fine. I have seen doctors at the eastern seaboards best you can get. I have been checked for cancer, lupus, tuleremia, lymph node biopsies, lyme, celiac, syrodjen's and many more strange illnesses I have never heard of that are rare. I have seen a infectious disease specialist that ran some weird test. My husband and I have a really good friend who is a trauma doctor that lead all this to find out why I went from a healthy person to being so sick. He is like a brother to me and has tried to make sure I don't have cancer of any kind. I have some of the best hospitals in our area. John hopkins, jefferson, hup, mayo etc. I have had 12 tubes of blood taken at once. I bruise horrifically. Like someone beats me. I have spend more time at the hospitals for a couple years that I just gave up. I now don't go even for small things cause I got so tired of getting the I don't know but it's not normal and one day whatever is causing all this will rear it's ugly head. They have some pieces to the puzzles but not the whole picture yet. I hope you get your answer. just don't get to excited to have an answer and a cure. I have had that let down many times. I say that with the best intentions. The bruising can be really bad for no reason. Sometimes my hip would hurt for no reasons and then it would be black and blue the next day. Then my son would climb on my lap to read to him and hit my eyebrow Lightly and I would have shiner within ten minutes. My skin would be tender and sensitive. I have learned to keep myself warm all year round and I bruise less and vitamin b complex helps. Honestly I have been to hell and back.


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## Caitedid

Rainy- I do understand that this referral is not in any way a guarantee that they'll figure it out. It has been such a relief to even have a provider believe that there is something wrong in the first place. I've spent more than ten years being diagnosed with one random thing after another, with no question of why an otherwise health 20-something was being diagnosed with "old folks problems". I've been told repeatedly to quit the work I love, that slowing down is a normal part of aging (I'm sure it is, but I'm only 30), etc.


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## ChristieAcres

We are all different, as I have found out over the years, with how FMS affects us and what other conditions are being suffered with it (I have CFS and FMS). Mine is chronic and severe, however, the more in shape I am, the better I feel, but I don't have conditions which keep me from exercising, hiking, and staying active.


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## Linda J

I have chronic fatigue, fibromyalgia, irritable bowel, and interstitial cystitis (this was recently diagnosed and all related to fibro). I had stopped taking Lyrica because of the expense and was tired of being on antibiotics every 2 weeks for UTIs. I was falling asleep at work at my desk because I was exhausted and continually looking for a restroom. 

After the cystitis diagnosis and being absolutely irritated with the expenses of doctors and medications, and the attitude of "maybe it's your age" from the last doctor, I started reading From Fatigued to Fantastic! by Jacob Teitelbaum. I bought some of the supplements he recommended to jump start the cells to work the way they should. It's been a week and I'm beginning to feel more energy. He has a website (www.vitality101.com). He promotes the SHIN protocol of treating fibro and cf. It's S-sleep, H-hormonal deficiencies, I-infections, N-nutritional deficiencies. At the back of the book, there is a worksheet to help a person know where to start to feel better. 

I just want to feel more in control of this and have my life back. I think this is helping me.


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## rainy5

I figured apple cider vinegar made me feel better so I would take more each day. Wrong move. I will take it twice a week. One teaspoon. I have had only three yeast infections in my life. After increasing my apple cider vinegar. I felt good til I now have a horrible yeast infection. ITs the only thing different. I did. So for two days I am eating tons of garlic yougert, tumeric, green tea. I see the biggest difference after the tumeric. I also rank coco nut milk from the can. I feel like the fog has lifted after that. My joints are not hurting and my yeast infection is almost gone. I really think the tumeric helped the most. My family doctor thinks cfs and epstein barr is yeast related. after the yeast infection is gone we are going to try caprylytic acid he said. I let you know how it goes. I also lost three pounds. which is a miracle for me with my thyroid.


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## rainy5

Caitedid, I wish you the best with your appointment. Let us know how everything goes. 
I will keep you in my prayers for an answer.


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## rainy5

/www.lowcarbfriends.com/bbs/Let's talk....YEAST/CANDIDA! it has had 153,000 views plus
they say fibro may be caused by yeast. read this blog and see if any of your symptoms. you an try it see if it helps. It is helping my symptoms. I feel much better. I have a ton of energy.


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## Caitedid

Wanted to update all of you. After more testing and a consult at Mayo, they're saying fibro and osteoarthritis, as well as the spinal stenosis that I already knew about. As much as anything I feel better having some diagnosis and a team that believes that I'm not crazy/lazy/depressed/stupid. 

I made the mistake of seeing a different doc last week for a lung infection as mine was out of town. I ended up reporting her to HR when she told me that "Fibro is something they made up to make fat, lazy, depressed people feel better about themselves". I work full time in a job where I average 6 miles a day of walking and lifting, I'm losing weight, and my own doctor said that being mildly depressed is a perfectly reasonable response to what has been happening.

Saw my doc this week, she started me on gabapentin for the nerve pain, Flexeril for the muscle spasms, and painkillers for my arthritis. Here's hoping it helps!


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## nduetime

Sorry it has been so long since I posted. Had medication and pain issues. Just everything all at once and we all know how well we work with stress.... This past week was a tough one due to weather changes here and I am finally feeling better. I still managed to get everything done each day, it just took me longer. But I got it done! Yea me! I am going to start a regular walking program and keep my fingers crossed. Changed meds and feel much better there as well. One day at a time. Hoping everyone has a healthy and Merry Christmas!


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## nduetime

Caitedid said:


> I made the mistake of seeing a different doc last week for a lung infection as mine was out of town. I ended up reporting her to HR when she told me that "Fibro is something they made up to make fat, lazy, depressed people feel better about themselves".


:nana::nana::run::run::umno: Love Dr's like this. Thanks alot Doc, even though the rest of the medical community has determined it certainly is very real....This is where the term "whatever" comes in lol.
I am glad it was reported. Good for you.


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## Caitedid

Glad to hear things are looking up for you Nduetime. What cracked me up is that both docs are at a Mayo satellite clinic. A Mayo rheumatologist diagnosed it, it's real enough for both the Mayo and NIH websites to list it, but she thinks it's made up!


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## txplowgirl

I was officially diagnosed with Fibro back in '08 but i've had the symptoms all of my life. I also have Rhumatoid arthritis, gluten intolerence as well as other food intolerences. Ugghhh, there are days I can barely move and then I have my good days.
I have found out from the Fibromyalgia Network that over 75% of people with Fibro have food intolerences. Gluten being the main culpret. That is a protien found in all wheat, rye and barley and processed oats. 
So, through going through a food elinination diet, I found that I have a problem with gluten, dairy, nightshade vegetables, (ie, tomatoes, potatoes, all bell peppers, eggplant, tobasco sauce). These nightshades have a low level toxin in them that causes swelling and pain in the muscles and joints, this affects anyone that has arthritis of any kind also. MSG, and sulfites.
I eat plain meats, fish, brown rice, some veggies and some fruits and peanut butter. Basically a whole foods diet, nothing processed, ie packaged.
I highly recomend looking into this because not only can you feel better but it can help with other health problems as well.


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## Our Little Farm

Caitedid said:


> Wanted to update all of you. After more testing and a consult at Mayo, they're saying fibro and osteoarthritis, as well as the spinal stenosis that I already knew about. As much as anything I feel better having some diagnosis and a team that believes that I'm not crazy/lazy/depressed/stupid.
> 
> I made the mistake of seeing a different doc last week for a lung infection as mine was out of town. I ended up reporting her to HR when she told me that "Fibro is something they made up to make fat, lazy, depressed people feel better about themselves". I work full time in a job where I average 6 miles a day of walking and lifting, I'm losing weight, and my own doctor said that being mildly depressed is a perfectly reasonable response to what has been happening.
> 
> Saw my doc this week, she started me on gabapentin for the nerve pain, Flexeril for the muscle spasms, and painkillers for my arthritis. Here's hoping it helps!


I take Gabapentin for nerve pain and it really does help me. Hope it helps you.


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## Caitedid

After 6 days on the new meds I already feel a ton better. My fingers are red and hot again tonight, so will have to track that and report back to her about it. Also going to ask her if I can bump the gabapentin up again. I feel better on two than I did on one, and better on one than on none. Worth a try to see if I'd feel better on three!


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## DamnearaFarm

Hi guys. I thought I remembered a thread on the family board and then found y'all here. Thank yew, fibro fog!
Going through a pretty rough patch now. No insurance so it's pay as I go. Saw the doc for my three month appt last....Friday, I think?
Upped my gabapentin to 2100 mg daily, my flexeril to 4 10mg pills daily and added Lyrica. My pristiq stayed the same.
So far, no change. I take the Lyrica 1xdaily for a week, then 2x daily then 3x. I am at my wits end. Yeah, fibro pain I understand. Pain from the pinch nerve (that he wants an MRI of to make sure no discs are bulging) I understand. 

Not getting a freaking break, no matter WHAT I do or don't do is killing me. I take it easy, I still can't function. I try to work like normal, I can't function. Cooking is done leaning on the stove, emptying the dishwasher requires a rest and work to stand back up straight-ish again. I don't sleep any longer. I doze. If I move, and this is any part of my body, the pain wakes me up and I bite back the grunt/groan/noise to keep from waking my husband.

God love his heart, he still doesn't get it. He's felt the knots, seen me cry with the pain and had to help me out of bed or up out of the garden. He doesn't get the constant tiredness, the fogginess that has me sometimes searching for words I KNOW that I know, the inability to 'pay him some attention' like I used to. Please, read between the lines on that last one. 
I know, in his heart of hearts that he believes it's partially an excuse. Never mind that I am not an excuse type chick-I try to shoot straight. He's said before that he believes something is wrong with me but he's not sure fibro is it. 

I am sorry for the post turned rant and whining but it's been a very wet week and between that playing merry hell with me and the no sleep thing I am wearing very, very thin. 
Anyone have any thoughts on the husband thing? How to make him see I love him just as much as ever, even if I can't function as he wants me to, when he wants me to? I try to show him attention- texts during the workday, hugs when he gets home, his favorite foods for dinner, trying to snuggle as close to him as possible at night....but evidently love is tied to one act around here.


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## Whisperwindkat

RamblinRoseRanc said:


> Hi guys. I thought I remembered a thread on the family board and then found y'all here. Thank yew, fibro fog!
> Going through a pretty rough patch now. No insurance so it's pay as I go. Saw the doc for my three month appt last....Friday, I think?
> Upped my gabapentin to 2100 mg daily, my flexeril to 4 10mg pills daily and added Lyrica. My pristiq stayed the same.
> So far, no change. I take the Lyrica 1xdaily for a week, then 2x daily then 3x. I am at my wits end. Yeah, fibro pain I understand. Pain from the pinch nerve (that he wants an MRI of to make sure no discs are bulging) I understand.
> 
> Not getting a freaking break, no matter WHAT I do or don't do is killing me. I take it easy, I still can't function. I try to work like normal, I can't function. Cooking is done leaning on the stove, emptying the dishwasher requires a rest and work to stand back up straight-ish again. I don't sleep any longer. I doze. If I move, and this is any part of my body, the pain wakes me up and I bite back the grunt/groan/noise to keep from waking my husband.
> 
> God love his heart, he still doesn't get it. He's felt the knots, seen me cry with the pain and had to help me out of bed or up out of the garden. He doesn't get the constant tiredness, the fogginess that has me sometimes searching for words I KNOW that I know, the inability to 'pay him some attention' like I used to. Please, read between the lines on that last one.
> I know, in his heart of hearts that he believes it's partially an excuse. Never mind that I am not an excuse type chick-I try to shoot straight. He's said before that he believes something is wrong with me but he's not sure fibro is it.
> 
> I am sorry for the post turned rant and whining but it's been a very wet week and between that playing merry hell with me and the no sleep thing I am wearing very, very thin.
> Anyone have any thoughts on the husband thing? How to make him see I love him just as much as ever, even if I can't function as he wants me to, when he wants me to? I try to show him attention- texts during the workday, hugs when he gets home, his favorite foods for dinner, trying to snuggle as close to him as possible at night....but evidently love is tied to one act around here.


Yep, that is a tough one around here too. I don't really know what to tell you. I try to make it up to him when I am feeling "good", but when I am not it is stressful. Just wanted to let you know that you aren't the only one. Blessings, Kat


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## DamnearaFarm

Thanks, Kat.
<<<gentle hugs>>>>


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## nduetime

Whew! glad we are not the only team going through that! Honestly, I try to "be there" as often as possible. Even when I do not feel like it, I do so for him. I will not let fibro take that away too. For myself, I just do not care about it that much anymore so i figure, why not make at least one of us happy in that department. I just have to make sure that he does not think that i feel it is a chore. 

i fell off the moving ATV about ten days ago. Yes, of course I landed right on my knee. It seems to be coming along okay. Doc anted a mri but I am holding off.New meds are working out fine and I can afford them even if i didn't have the insurance. We are due for a big snow hit so we will see how everyone around here is feeling in the next few days. Trying really hard to stay positive, keep the stress lowkey, find humor in stuff, and make time to kiss and hug the hubby. He has been great while my knee has been hurting.

Amazing how many times I think of all the dumb stuff i did when i was young and how much a lot of that has affected my health today. Ahh youth! If only we had known! lol, I would probably have done the same things like: attaining my black belt in Tae Kwon Do, breaking and riding horses, weight training, and breaking cement anyway.


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## beccachow

Am I the only one who stares at her DH when he is talking and just thinks, "why are you still talking?" I have the attention span of a gnat, and the ability to put words together to answer him sometimes is such a stretch for me.

Pssst...does anyone else get fibro headaches from the minute you wake up clear until you go to bed? Wondering if this is a FM thing or something else. Daily headaches for about 2 months now, getting super old.


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## MullersLaneFarm

I got a new diagnoses a couple of months ago that finally cleared up why I was so.darned.tired.all.the.time I thought it was just part of my fibro, but received word that I have a vit. D deficiency. I have been taking vit D-3 daily for a couple years and I work the garden without sunscreen (shhh) on.

Vit D deficiency will mimic chronic fatigue syndrome. I'm on 50,000 units of vit D weekly to help get me back into the normal rage. It may take over a year or more for this to happen.

Since I got this diagnoses, DH is realizing that I'm not taking naps throughout the day and night because I want to, but because my body is shutting down and saying STOP! He's already been waken too many times by pain waking me up and that involuntary grunt or yelp from the pain. He's starting to get it, slow but sure. He bought me an old fashion kitchen chair with pull out steps so I can sit when I need to for cooking.

I can't help you with 'being there' for him. DH has always had a low libido and it was usually me initiating. Now, it's just hugs and kisses and showing each other our love by helping each other out.

The dumb stuff we did, Trish!! Like cross country motorcycle riding, gymnastics, running hurdles for track, weight training that pushed muscles until exhaustion??? I wouldn't have missed it for the world!

Headaches ... for me, I don't have constant headaches, just times throughout the day where I have pain like someone is drilling into different spots of my brain for 2-10 minutes. Almost feels like different parts of my body when having a fibro flare.

I have started back on the exercise bike at least once a day. It is helping with pain and it has given me more energy.


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## Caitedid

It's like you guys all took the words right out of my head and posted them while I was gone today. I'm amazed at how content I am being single, and having NO IDEA how I would stand to be married with this disease. I am a bit of a hermit anyway, but I find the alone time to be so crucial since I've gotten sick, it's scary. 

Ramblin- I find myself still having a hard time believing that this is real, so on one level I totally understand why our partners/friends/coworkers have a hard time understanding it. OTOH, I really want to deck the next person who tells me how their neighbor's cousin's brother-in-law had the same thing and just slept more/stood on his head 8 hours a day/quit his job to live off the millions he won in Powerball and is now completely cured. I am blessed enough to not have anyone who depends on me except the dog, which means that I can come home from work, read in silence, and go to bed at 9 every night. It also means that I will never have the option of not working, there's nobody to value my needs the way I do, and nobody cooks me dinner. I think this whole thing is a "----ed if you do, ----ed if you don't" kinda deal. 

Caite


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## txplowgirl

I can sympathize with Everone on here, have i got a doozy ya tell ya. 

I've been dealing with pain most of my life and was just dxd 3years ago with fibromyalgia and chronic fatigue. I've been on just about every pain pill, fibro med and/or antidepressant out there.
Not once in all these years has a dr done xrays of my back even though ive begged them to at one point or another. They just kept telling me to take the pills and deal with it.

Well a couple days ago I decided to make an appointment with a chiropractor. Got my results this morning and to say im ----ed dosent even begin to cover it.
My spine is so crooked its not even funny, I have pinched nerves down most of my spine. I'm no Dr but I could see the curves in my back from 5ft away. Dr says its called vertebral subluxation. 
Dr says he has never seen a spine as bad as mine. I'm getting 23 treatments to see if we can make this any better. Normally cost a little over 2000 bucks but because mine is so bad and I'm out of work he's just charging me 550 bucks 250 now and the rest on the first.if this dosent work then I might have to have surgery
Fist treatment was today and let me say it wasn't fun.
But after getting home I did quite a bit of reading up. Wow, this explains my dizziness, my numbness, tingling. , etc. 
Just one more thing I have to contend with. But maybe I might be on the mend somewhat now. I hope.


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## DamnearaFarm

Glad to see I'm not the only one who feels that way. 

It's funny you mentioned the headaches, Becky. I used to have constant headaches (not the migraines, I discovered mine are hormonal) until I started all these fibro meds. They went away for the longest time but are back again recently. I don't know if it's related to the recent pain spike or the weather (up, down, wet, wet, not so wet, wet). 
Oh and I can pay attention, except on the really bad days, but I'm with ya on the answers. It totally sucks. You KNOW you know what you want to say. You KNOW you know the words. But they're just. not. there. 

Trish- thanks for putting that part into words about not making him feel like it's a chore. I know he wants me to have a good time too but I really don't see how that's possible sometimes.... ya know?

Cyndi said "Since I got this diagnoses, DH is realizing that I'm not taking naps throughout the day and night because I want to, but because my body is shutting down and saying STOP! He's already been waken too many times by pain waking me up and that involuntary grunt or yelp from the pain. He's starting to get it, slow but sure."

See? Why can't others get that? That's exactly what it feels like. A complete shutdown. It might sound weird, but sometimes i've been really conscious of it. Like... when you start out doing whatever (in the latest case, it was Christmas shopping) you feel almost normal and are moving to reflect that. Then, as time goes on, much too early.... you start to slow down....you can't think as clearly, you can't pick things up as easily, you can't bend over then stand up as easily.....then things start getting really fuzzy and you notice your gait has changed. It's not as it was when you started... it's.....slower, stumbling or dragging or limping. Your arms ache, your legs ache and spasms shoot around your body if you don't quit NOW and rest. Going past that threshold is hell. You are SO exhausted, your brain is screaming for rest, your body knows it needs to rest but you spasm and cramp and pains richocet around your body as if you are being tormented by gnomes with burning pokers and serrated knives that they jab into your body.... and twist. 

Caite- I have a friend who is my age and who has RA and fibro. She also has young children. I cannot imagine having young kids and fibro. I don't have the patience any longer and there's no way I would be able to take care of them properly 24/7. 
You do have it lucky in that you don't have to try to explain to someone that you're really not lazy/tired, etc. But you are also unlucky because you don't have that safety net either. If not for my kids who help with the housework and my oldest daughter who, at 19, is my major critter help go-to.... well, I wouldn't be able to have what we have or do what we do without it. 

I kinda see the point of it being hard to believe. I totally see that- this is a disease that rarely manifests in something you can SEE (except for those spasming and knotted muscles) so it is hard. By the same token, it makes me kinda sad that those who know us best and love us most should believe it. Toss aside the fact that we have docs and meds and such that prove it. Take the core fact of they should BELIEVE us because of who we are to each other. I know I'm not in the business of making excuses or trying to shirk work or whatever. So if I DO drop the ball or can't do something, there's a ---- good reason for it!

txplowgirl- Wow. I don't know what to say. <<<Gentle hugs>>> for sure. 

Forgot to add- yeah, the 'cure' folk tick me off too. Hello, it's NEVER cured. It's only managed. It's not gonna go away because I eat this/don't eat that, take this/don't take that.....etc. I have a very dear friend who keeps trying to get me to take an OTC med that says it cures fibro. Umm.... if a cure were available, don't you think it would be something that docs know about and that costs more than 3.99 at the drugstore? Another friend wants me to start seeing a reflexologist. She KNOWS it will help. No proof, mind you... but she knows. My doc is a physiotrist (don't feel bad, had to look it up myself) he deals in how the body moves, period. You'd think he'd be the perfect guy, right? Not some....chiropractor (they have their place, they may be able to relieve some pain but they can't cure fibro.) .... or reflexologist.


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## beccachow

Triple R, I think sometimes we are our own worst enemies. Hooked up to IV antibiotic drips over an entire summer a few years back to kick the Lyme's butt, I rarely missed a beat. Even now, I am so used to dragging myself through the daily activities that I still don't miss a step. Sadly, our families then take it for granted that we can't be THAT sick or forget that we even are, or just choose to ignore because we are still shouldering the weight of the household on our backs.


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## Our Little Farm

I hate it when I know the word I want to say, yet it is just won't come to me. It can be as simple as the word simple, or door. 

It is so hard to explain to people when you have stopped mid sentence over an everyday word. 

It is frustrating.


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## MullersLaneFarm

I don't try to explain any more. I just say something like, "Fibro stole my word"

DH doesn't understand the fibro, it was only when I was diagnosed with vit D deficiency that he was able to accept the sleeping. He's still trying to get me to try an expensive 'cure' one of his friends told him about.


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## Whisperwindkat

The one thing that I have found is that no one really understands fibro or CF unless they have been there. They wake up in the morning feeling like they slept at night, we wake up in the morning feeling like we wrestled bears all night. For them pain is something you take a pill for, rest it a bit and it doesn't hurt anymore. For us pain is there every single moment of every single day, it just varies in intensity and degree. Anyway, I could go on an on. Thought you folks might like to read this...Spoon Theory. Sometimes it helps me to explain how I feel in a way that they can understand. Sometimes they get it and sometimes they don't. Blessings, Kat


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## Caitedid

I wrote a bit in my blog about the process of acceptance the other night, which was a big help for me. Writing is easier than talking to people about things, because I can wait for the right word to come back to me. Otherwise I blame it on gnomes!

RoseRanch- I will admit that the idea of having nobody to fall back on terrifies me at the same time that it's a comfort. It occurred to me yesterday that not having a relationship with my family means that one of my friends will have to deal with arrangements when I pass. Having grown up with both parents dealing with chronic illness made it very clear that I will not bring kids in to this situation. 

It is a blessing though to have friends who are happy for me and at least partially understand the excitement of a "Zero Percocet Day".


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## nduetime

Amen and Amen to all of you! It is frustrating...but things like this little chat group really help. At the very least it is people i do not have to explain things too! Yea! My Dh just does not get it either. He is always looking for a cure for me as well. I keep telling him that I have to learn to manage the various symptoms because there is no "cure". He will not accept it. Mr Fix it, you know what I mean? Keep plodding on folks and I will too. Can't keep me down for long. I like silver linings too much i guess. BTW, I was tested for various vitamin def. D and some B and another I cannot remember off hand. They do play a role for sure, especially if you are feeling really tired and run down. Doesn't hurt to check them out and make sure. Hmmm, time for bed. Hello pain pill my little friend...just kidding...not really...no seriously still on them for the knee but only at night so I can get some rest. Uhm, good night all!


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## nduetime

Well...THAT certainly did not work! Bummer. How can one have insomnia and chronic fatigue both?Oh well, I do like midafternoon naps when i did not sleep the night before. guess that will work.


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## Caitedid

Nduetime- I just bought an electric blanket for the couch, if you want to talk about things that might help you sleep. My dr. also prescribed a muscle relaxer to be taken before bed, apparently it has shown great promise for sending folks with fibro off to a good night's sleep. Caite


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## DamnearaFarm

I feel ya on the disappointment about the meds, Trish. (I took my flexeril prescription to Sams Club to be filled yesterday.... turns out the doc forgot to sign the 'script so they couldn't fill it.) Back to my point about the meds....evidently, counting on meds to knock you out isn't workable either. Yesterday was the first day of adding the second lyrica and the seventh (yes, seventh) 300mg gabapentin. Took 'em both at bedtime, seeing as I didn't get the flexeril (and yep, up to FOUR ten mg pills a day) and I hoped they'd knock me out so I could at least sleep through the night. Nope. I did sleep longer but not the whole time. 

Becky- If you haven't shared the spoon theory (thanks for the link, Kat  ) with you family then do so. It may help. I know what you mean though. When Superwoman still tries to do Superwoman tasks after she's hit with a chronic illness it does sometimes send the message that you're okay. I explain it to folks like this:
Sure. I can do that. I can load a trailer with hay, wrestle with a rescue horse or unload a pickup truck load of feed.... just like I used to. But now, I may not be able to move for a few days afterwards. 

Caite- I know what you mean.. I get excited about 'no muscle relaxer days' and any day I can delay taking them and not feel it is a good day indeed. 

I second the electric throw, as I sit here in my chair parked in a sunny spot in the dining room and have my shoulders/back wrapped in my throw. It's a big help. 


I think the crux of the whole deal with fibro, in addition to the 'you don't LOOK sick' is that fact that it cannot be cured. It can only be maintained. It's a ----er, though.....no one disbelieves or tries to cure an amputee or someone with ms or cp or even another unseen illness- diabetes. If they don't understand the disease, at least they understand that it can't be made to go away and that the people who have it cannot do everything that a 'normal'/healthy person can do.
We, along with other people with invisible chronic illnesses are not allowed that level of understanding. People just don't know enough about the illness to understand. The spoon theory sums it up perfectly. I guess we just need to keep pushing for education. Compounding the issue, though, is that fibro is still a largely unknown or understood illness in the medical field as well. Cases in point....

A good friend saw this one family doc for YEARS. When the doc moved her office just over the line of a neighboring state (but still several miles beyond where the office was) my friend followed the office there and faithfully made every appointment for years. As her fibro progressed, she began talking to her doc about it (she sees a rhuematologist as well. Not many of them will touch a fibro patient but she has RA as well) and found out this doctor who'd seen her for years, who knew her patient and her medical history flat out told her that fibro was in her head. She walked out and never returned.

Another friend who has had fibro before it had a name (she's in her 60s now and has had it since her early 30s) set up an appointment with a pain management clinic at the recommendation of her doctor. On her first visit, she asked the nurse practitioner what the protocol was for treating fibro patient. The woman looked her dead in the face and replied "Intense psychotherapy". She walked out as well.

How to get people to understand it if the medical profession doesn't? I swear, I wish it were in all my head......


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## Caitedid

Ramblin- I had to see a different doctor a few weeks ago as mine was out of town. When she told me that "fibro is an excuse for fat, lazy, depressed people to feel better about themselves" I walked out and reported her to the clinic HR department. I also told my regular doc and my pharmacist, who were both pretty shocked. Also told the other doc that if I'm fat and depressed it's because there are a lot of days that opening a bag of chips is as much as I can handle after a full day of work, and if I'm depressed I actually feel like that is a pretty reasonable reaction to losing so much to a disease that people respond to by saying ---- like that.


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## lazysheep

Its hard to read all your comments, to feel and understand all the struggles and frustrations... At 52, with (now recognizable) FB for over 15 years, I can understand all of it. FB is so individualistic, and the causes are specific to the individual, but the disease weaves a common thread. I hesitate to state my experience, as I am so far on the way to 'cured' as I could believe possible, but it has been fairly expensive without insurance, and an investment in time for treatments. I have taken no drugs, and am not on any now. One dr gave me lyrica and said 'try this'. Of course it didn't do anything at all. I started instead on a search for wellness, not just a 'cure' and found an MD/Naturopath (not just an 'herb doctor') who tested me for food intolerances, thyroid, pituitary and hormone imbalances and adrenal fatigue. I've addressed and mitigated all these factors, and can now live a pain-free life. Yes, pain free without drugs. I still do not sleep well at night, have little stamina, and little libido (altho' a full hysterectomy has a lot to do with that), but I do not have to take a nap in the middle to make it thru the day, and do not suffer from the joint and muscle pain and phantom fatigue unless I indulge in my forbidden foods. I am so happy to have found relief, and my dr. says I can make a full recovery, altho' I believe FB sufferers have sustained a mortal blow to their system in some way as to prevent a 'full recovery'. I encourage everyone to get tested for the foods you cannot digest (this is an enzyme deficiency, not an "allergy") and start on the road to recovery. My best wishes to all.


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## lazysheep

I suppose I should mention that my joint pain was so bad that I could not milk my goats, or lift a cast iron skillet off the stove. That is all gone now.


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## ChristieAcres

Early on, when I was diagnosed with FMS/CFS, I took myself off all meds, as I realized they really wouldn't do me any good in the long run. Despite how painful it was, I forced myself to work-out, had radically changed my diet, and lived daily with pain. Although I got more relief from getting off sugar, much less issues with headaches when I wore dark purple glasses (cool shades, I get compliments on, funny in the Winter...), and less pain when I am in shape? Like most have posted, the symptoms don't go away. Some get better with all the effort, and others just "happen" without warning. It has now been 21 years since I was diagnosed. Am I better? No, not really, but I mentally deal with it all better. My DS, DD, and best friend are the only ones I know of who are empathetic, caring, and supportive, doing their best to understand & respect me. DH simply doesn't understand, but is very kind about my health issues. He occasionally will ask me "what?" when he sees me suddenly wince or jump. I can't nap, but do try to stay in bed for 10 hours each night. 

On FMS affecting us differently, yes it does. Some of us have diseases others don't, conditions others don't, and we don't all have the same symptoms, either. I don't expect other people to understand and don't discuss my health issues with any one other than my closest family members. I have been without medical insurance now for 7 years and self-treat for everything but serious issues needing medical intervention.


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## DamnearaFarm

Caite- Grrrrrrrrrr... just grrrrr. What else is there to say on a family forum, eh?

Lazysheep- Thanks for sharing your story. I have read other accounts from folks who are/were able to treat their illness via lifestyle change and diet. It's a weird disease.... that's for sure. I try to explain it to people like this 'You know how certain ailments have their 'go-to' treatments? Certain antibiotics are better for certain infections, etc. Fibro isn't like that. No one knows what will work for any particular person at any particular time. What worked for you last week may not work this week. What you tried that didn't work last year does this one. It can be caused by anything... or nothing at all. Shoot- one of the most popular meds isn't a fibro drug... it's for epileptics!"
Glad your path is working for you 

Lori- valid point. Very vaild point. I know no one who has fibro that has JUST fibro. It seems to go hand in hand with other diseases that can cause more problems. I hear ya on the insurance thing, I haven't had it since 2009. I was diagnosed in 2010.  Finding a doctor that is willing to work with a cash pay patient who isn't expensive and will actually treat a fibro patient is nothing short of a miracle. 


Forgot to add-Of course I still feel like I wrestled a bear last night (  ) but last night was the second night of the extra gabapentin and lyrica. I am feeling more pain and spasms without the flexeril and can't WAIT until it's refilled but I did sleep almost through the night last night. Went to bed about ten thirty, went to sleep near midnight (pain.  ) and only woke up once before the alarm went off at four forty five. Perhaps there's hope for me yet. C'mon spring and warmer weather!


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## beccachow

I got my fibro secondary to the extensive damage done with Lyme. For me, the joint pain isn't as much an issue as the constant, mind numbing exhaustion and brain fog. And, like so many have said, the insomnia that cruelly walks hand in hand with this.

I got a memory foam pillow a few weeks back, and have awoken more rested than I have in years. They aren't very expensive, I got the contoured one and haven't suffered with neck pain since.


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## Caitedid

Becky- Like you it wasn't the pain so much for me as the fog and exhaustion. I also have degenerative arthritis in my back, so getting through work means taking a fair amount of pain medication anyway. I was waking up 6-8 times a night until I started the gabapentin and flexeril, so they have been a real godsend. I also have a memory foam pillow, and although it's made a huge difference in how my neck feels the next day, it hadn't helped the falling asleep/staying asleep.

I'm actually going to see my dr. tomorrow and will ask if this might be ra manifesting in my back, feet, and hands, rather than the OA they had assumed. It is amazing how differently it flares from place to place. The fibro pain tends to be a lot more electric or like someone hit a pressure point on a random part of my body, where the arthritis is more like my joints trying to separate themselves.


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## nduetime

I second the muscle realxers at night. i just have not taken any since I hurt my knee. I was afraid to take both Vicodin and a muscle relaxer together. Was up at 1 am again last night until around 4 am. i stayed in bed though. I try to avoid daytime napping at all costs. I only give in to that when I did not sleep at all the night before. The human body can only take so much. I have heard a lot of folks talk about foods they avoid and it seems to help them. I have tried cutting out some things but confess to being a baking addict. i love to bake and love to eat what i bake.I still take my anti-depressant and my thyroid meds because I need too and the world needs me too, lol.
I might try to electric blanket, I seem to fall asleep in my hot tub quite well! lol 

I love Sundays. I feed the critters in the am but then have a boarder who cleans stalls and feeds in the pm. As soon as I am done feeding in the am I have the entire day to do what I want or what i feel up to. My boarder gets stall board for the cost of outdoor and she cleans stalls both weekend days, sets up feeding for saturday night and then like I said cleans and feeds pm feeding on sunday. No cost to either of us and we both benefit.

little things like that make all the difference. Hope you all have had a great weekend. We spent the day with friends yesterday for lunch and the movie "War Horse" and then had a light dinner and rental movie at our house with them later on. It was a wonderful afternoon/evening.


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## DamnearaFarm

beccachow said:


> I got my fibro secondary to the extensive damage done with Lyme. For me, the joint pain isn't as much an issue as the constant, mind numbing exhaustion and brain fog. And, like so many have said, the insomnia that cruelly walks hand in hand with this.
> 
> I got a memory foam pillow a few weeks back, and have awoken more rested than I have in years. They aren't very expensive, I got the contoured one and haven't suffered with neck pain since.


I don't know what other meds you're on, but the one that did the most towards the fog (now I am only foggy when a flare hits and yeah, I apparently DID need an antidepressent) was the
antidepressant, Pristiq. When I found myself leaning on the washer and sobbing while my family watched the Super Bowl in the next room I decided it was time 


I've heard that the memory foam toppers help for fibro folks who can't afford the sleep number type beds. Hadn't thought about the pillows, though.


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## Caitedid

I think the Flexeril made the biggest difference in the fog for me, as it allows me to actually sleep through the night. I was waking up 6-8 times a night, so wasn't getting enough sleep to keep my brain functioning. 

Graduated to seeing the doctor every two months, which seems like a huge step. I've been going about every 2-3 weeks, so this is a step in the right direction.


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## beccachow

I am afraid of anti-depressants, they make me mroe tired and I would just die. I don't have the option of a nap, though others in the house seem to be able to lay down any time they like. they also go to bed super late and sleep all day so I am stuck with DD both morning, noon and night, when I 'm not working insane swing shift hours and caring for...well, everyone. How sad that I wake up already looking forward to bed time.

Triple R, those pillows are available at Wal-Mart, very inexpensively, like under $20. I like the contour, though I bought a regular one for DD and she doesn't like it (says it is too firm) so I use that, too.

Catiedid, that IS a big step.  I gave up on doctors all together; no help there.

I would like to introduce you guys to a drug called Provigil. Originally called the "shift worker's drug," it has been used for narcalepsy, too. It wakes you up, gently, clears the fog, and somehow you can still sleep when you need to. One pill in the AM and you are good to go all day. I have a script but use them only when I need to, like for a daywork or before a night work since I can't sleep between night shifts.


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## mountainwmn

I'm kinda stuck because I haven't been able to tolerate any of the meds, but i'm trying the whole diet thing now. I have been having tummy pain, so bad I can't eat for a while now. The rhuematologist decided it is IBS( I'm doubtful), but I've lost 15lbs and I have to figure something out to fix this. I can't do the elimination diet because EVERYTHING gives me pain, so I'm going to do juice for 2 weeks.


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## Caitedid

I realized this morning that I've given up all my online support groups, but I still check here at least once a day. It is so good to talk to people who just keep truckin' one way or another. I found the groups that I had joined were full of whining, infighting, and competition about who was sickest. So big THANKS! for not being like that.


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## Karen

lorichristie said:


> Early on, when I was diagnosed with FMS/CFS, I took myself off all meds, as I realized they really wouldn't do me any good in the long run. Despite how painful it was, I forced myself to work-out, had radically changed my diet, and lived daily with pain. Although I got more relief from getting off sugar, much less issues with headaches when I wore dark purple glasses (cool shades, I get compliments on, funny in the Winter...), and less pain when I am in shape? Like most have posted, the symptoms don't go away. Some get better with all the effort, and others just "happen" without warning. It has now been 21 years since I was diagnosed. Am I better? No, not really, but I mentally deal with it all better. My DS, DD, and best friend are the only ones I know of who are empathetic, caring, and supportive, doing their best to understand & respect me. DH simply doesn't understand, but is very kind about my health issues. He occasionally will ask me "what?" when he sees me suddenly wince or jump. I can't nap, but do try to stay in bed for 10 hours each night.


Boy can I relate; it sounds so much like my story too and nothing has helped. It's really made worst by the pain from the bone-on-bone osteoarthritis in my knees, hands, feet, back and neck, as well as 2 herniated disks in my back which has put me in a wheelchair for about 3 years now. Because of my seizures and other issues, surgery is not on option.

Sleep is a huge issue with me because of the 24/7 pain, I just can't sleep. But I've now taken a totally different approach to sleep though that has helped. I've always felt guilty or like I'm being lazy to sleep other than when it's bedtime. But I've gotten so if I can't sleep at night, I no longer battle it; I stay up and try to do something constructive. If at 6:00 a.m. I'm finally getting sleepy; I go to bed and am able to sleep for a few hours. If I need to lay back now at 3:00 in the afternoon, well I'm laying down. 

That just sleeping whenever I am able, no matter what time it is, has helped me enormously! Now mind you, I'm retired so I have the luxury of being able to do that. I've also got a great husband who is very supportive and understands the disease and pain issues.

Oh how I wish I could afford to see a Naturopath (and that there was one within reasonable driving distance around here), but my insurance doesn't cover it and social security is our only income.


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## Karen

Also was going to say; I think one of the worst things for me has been that I no longer wake up refreshed. Rather I wake up feeling like I've been abducted by aliens during the night and they did all kinds of terrible experiments! I wake up feeling as bad, or worst, than when I went to bed. 

Oh and that 'fog' thing; I desperately hate. I feel like I'm walking around in the Twilight Zone. I've never have been able to deal with that weird type feeling like I'm half-drugged or something.

I guess it's no wonder why people who don't have the disease think I'm crazy; but I don't know how else to explain the physical feels I have, let alone the practical/emotional 'feelings' that come with it. 

Like the other poster, you guys have been a great help to me too. It does make a difference know that others understand and can associate.


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## DamnearaFarm

Mtnwoman- I'm sorry you can't tolerate the meds.  Perhaps you can still utilize the heat pad/blankets, hot bath soaks, gentle massages (I know, sometimes it feels like every touch is full of razor blades), gentle stretching, swimming- yep, one of the few exercises I can do with the asthma too and it DOES help, and most of all REST. 

For you and Karen and really, anyone with a chonic illness (you too, Becky!) too- don't EVER feel lazy or guilty for resting. I know sometimes it take a while for the spasms and cramps to stop long enough for your body to relax but it IS essential. You need that break to just do whatever you need to do. Think of it as self preservation, if you will.  

Caite- that's great  I know what you mean- too many message boards are full of people who don't live like we do and who aren't used to having had such a physical life. They can more or less take a time out, we have no choice but to carry on. We have families and critters and gardens that need us!


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## Caitedid

RRR- I do wish I had a husband to take care of me and pay the bills, but that seems rather unlikely (and generally unwished for). I am thankfully in a position to give myself a year off from farming full-time, to get my health and finances in order and decide what I can reasonably commit to long-term. I still have to work full-time, but 40+ is a lot less than what I've been working, so it feels like a vacation.
It seems that what really gets people in trouble is the ability to slow down too much or to give up. Those of us who are forced to keep doing I think find more ways to accept and deal with the realities of our conditions, and then move on. Navel gazing is terrible for your health, a fact I have seen first hand in my father's deteriorating medical status.


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## beccachow

Caitedid you just reminded me of a funny (now, haha) thing that happened when I was battling the Lyme a few years back. I was SOOOOOOOOO stupid-foggy-out of touch with reality-scatter brained that I thought we got paid when we didn't. I paid ALL of my bills that week. I bounced about 15 checks. I went to the bank and begged them to remove some of the fees; thank goodness, they reversed some but not all. I wish someone else would take care of the bills, lol.


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## ChristieAcres

Karen said:


> Boy can I relate; it sounds so much like my story too and nothing has helped. It's really made worst by the pain from the bone-on-bone osteoarthritis in my knees, hands, feet, back and neck, as well as 2 herniated disks in my back which has put me in a wheelchair for about 3 years now. Because of my seizures and other issues, surgery is not on option.
> 
> *Gosh, I am sorry to hear about your Osteoarthritis, yikes gal  Those of us without additional health problems leading to that, really need to be grateful. My heart goes out to you and I will remember you in my prayers. I can't complain about getting less pain, but sure have to work hard for that. Those jabbing sudden pains are interesting. *
> 
> Sleep is a huge issue with me because of the 24/7 pain, I just can't sleep. But I've now taken a totally different approach to sleep though that has helped. I've always felt guilty or like I'm being lazy to sleep other than when it's bedtime. But I've gotten so if I can't sleep at night, I no longer battle it; I stay up and try to do something constructive. If at 6:00 a.m. I'm finally getting sleepy; I go to bed and am able to sleep for a few hours. If I need to lay back now at 3:00 in the afternoon, well I'm laying down.
> 
> *I have found the less active I am, the harder it is for me to sleep. That is a 2-edged sword, as most would agree. Lately, have been ramping up my activity level, taking walks, adding more exercises, but that seems to mess me up at first. So, in the beginning, it doesn't help much. It is much harder for me to sleep, until I have a more challenging schedule to maintain. Then, after I am in good shape, I have to not just maintain it, but occasionally exhaust myself to sleep. I will now think of you and be grateful, keep at it.*
> 
> That just sleeping whenever I am able, no matter what time it is, has helped me enormously! Now mind you, I'm retired so I have the luxury of being able to do that. I've also got a great husband who is very supportive and understands the disease and pain issues.
> 
> *I need to get a part time job to supplement our income. Currently, I am working as a Managing Broker (Real Estate), but not much biz. DH's business has been very slow, so... He has a disability (from a severe head injury), so he cannot be trained to do any other kind of work than he does right now.*
> 
> Oh how I wish I could afford to see a Naturopath (and that there was one within reasonable driving distance around here), but my insurance doesn't cover it and social security is our only income.


I can't afford a Naturopath, either. Every morning, I awake in a fog, and I call the process of having a functional brain my "thawing out time." I am allergic to all narcotic pain killers, also a number of meds, so avoid them as much as possible. I bought a number of books on Herbology, into self-treating for whatever I can. Oh, BTW, never try to do anything while in the "fog..." as that would be scary. I tell my DH simply to let me "thaw out" when he starts talking to me while I am "out there..." I am glad the fog is only in the morning for me.

If we can't laugh at ourselves, it would be a drag, eh ladies?!


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## Caitedid

I'm having a bit of a downer. I'd been feeling really good for a couple weeks, and since it started about the same time I started all the meds, I assumed the two were totally connected. I've had a bad few days, and granted they're not as bad as a lot of days have been, but... Had brain fog yesterday trying to remember the name of a place that I worked for two years, and was literally wearing a shirt with the name of the place at the time. I know the meds are helping because I'm not nearly as bad as I would have been, but it's still a disappointment.


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## DamnearaFarm

Caitedid said:


> I'm having a bit of a downer. I'd been feeling really good for a couple weeks, and since it started about the same time I started all the meds, I assumed the two were totally connected. I've had a bad few days, and granted they're not as bad as a lot of days have been, but... Had brain fog yesterday trying to remember the name of a place that I worked for two years, and was literally wearing a shirt with the name of the place at the time. I know the meds are helping because I'm not nearly as bad as I would have been, but it's still a disappointment.


<<<gentle hugs>>>

----ed fibro. One step forward and two steps....erm, what direction was that again?
I've noticed my fog increases with my level of tiredness. Could that be the issue, Caite?


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## ChristieAcres

(((((((((Caitedid))))))))))

It is raining HARD, and our ground here is saturated (snow melted and lots of rain). That increased moisture...hmmm. I have been staying in, except for taking daily walks now with DH (wood stove results in dry air, which is best for FMS). Daily walking? Yes, in the rain :rainprf: I am flat determined to keep walking, unless the wind is blowing too hard. I dress like a marshmellow, too. So far, my other work-outs are going fine (T-Tapp is the very best for FMS, in my opinion, and the Elliptical is no impact, so...). Sleep? LOL. Here we go again... I just have to keep at it, to get to the next level. Then, I will be able to sleep more easily. It makes such a difference with all my symptoms, the better shape I am in. That and staying on a strict diet, are my only options. Diet has come up in another thread, so I will touch on that again.

We all seem to know sugar is a real villain, so getting off it can help with those symptoms a lot. Now, dropping those empty carbs, yes, but I notice a significant difference when eating more protein (from organic meats). Also, eating organically, 3 meals/day, and 2 snacks/day. An FMS researcher shared with me some info about products. I now only use organic type products (Goat's Milk Soap, Shampoo, etc...). I already make my own Comfrey Salve, about to make up more as I am running low. That is very soothing, too.


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## Caitedid

I have been craving protein like they're gonna make it illegal. Found myself in the grocery parking lot eating turkey out of the package last night, with a bag full of dry beans and a huge bag of peanuts last night. On the upside it's been a few days since I've needed any painkillers to get through work, although I'm not sure about today. I think it's funny that I can tell how bad a day's going to be by how hard it is to get dressed in the morning. Caite


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## mountainwmn

I didn't even make it through my juice diet, my tummy suddenly got better on its own. So now I'm eating everything I see, but not being able to eat or eating anything hasn't seemed to make much difference for me. I do like the idea of sleeping whenever you can, it helps me a lot. Lately I have been up by 5 am with tummy pain, then back in bed around 8am. But before that I couldn't fall asleep until after 1am, then would sleep straight until 11 or so. 
I have always felt fine when I wake up, but I have always had the option to stay in bed as long as I wanted. And of course, the thing that helps me the very most is my hot tub. When it's bad I can soak 2 or 3 times a day, and it is amazing.


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## Caitedid

Talking to one of my friends the other day about how I feel like Alice in Wonderland with this. Like the illness is the Red Queen, the people and events affected by the illness are the cards, and the doctors are the supporting characters, with a healthy life being the Cheshire Cat. It made me feel better to be able to think of all of this as being one thing, especially knowing how the story ends.


----------



## beccachow

Strange day; all of my "long muscles" hurt; thigh, upper arms, etc.


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## Jaclynne

I have fibro, osteoarthritis, degenerative disk, copd and diabetes. 

We have a sleep number bed - it is wonderful and a huge improvement over the regular innerspring mattress.

But about 2 yrs ago I got pnuemonia and purchased an adjustable twin bed for the guest room so I could 1) sleep without keeping dh awake and 2) sleep with my head elevated (much more comfortable on the back than a pile of pillows. I got a 4" memory foam topper for the bed.

I love the memory foam, by far better than the sleepnumber and much less expensive. It is hot though. That's good in winter, it holds your body heat, but it requires a serious mattress pad to tolerate the summer months.

Now that dh is gone, I packed the sleep number away and got myself a full size adjustable bed with a memory foam topper. Its like sleeping on a cloud.

I bought the adjustable beds off Craig's list - cheap. Just examine them well (ok, I'm a little freaked out by the thought of bed bugs). I've since moving set up a second adjustable twin w/ memory foam in the guest room so my guest sleep good too.

Jackie


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## DamnearaFarm

I've been told the memory foam was a big help. We have a california king bed so I'm sure the cost of the foam would be outrageous. 

Jackie- what meds (herbal or pharmaceutical) are you on? Thoughts on those?


Btw, y'all..... I just wish this danged rain would pass us by. We've had more of a spring than winter here. All this chilly moisture is wreaking havoc on my muscles. I had one going crazy the other night..... get this.....right about where the edge of the elastic on my bra hits below my shoulder blade. Looked like I was trying to shrug and couldn't quite make it!
Dh is making progress, though.... whenever he sees me totally wiped out and I mention exhaustion he tells me to go lay down already, then!
He's also learning if I am danged near noncommunicative that I'm hurtin' BAD. I am normally very talkative. 
It's progress, anyway. 


How is everyone else feeling?


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## ChristieAcres

RamblinRoseRanc said:


> *I've been told the memory foam was a big help. We have a california king bed so I'm sure the cost of the foam would be outrageous. *
> 
> *Get a Memory Foam Topper, which is much more affordable and makes quite a difference! We have a Memory Foam bed, and also another bed in our travel trailer, with the Memory Foam Topper on it (incredibly comfy).*
> 
> 
> How is everyone else feeling?


Better, as the more active I get, the better I feel. That is the rub, the price is paid when I increase my activity. For us with FMS, "No pain = no gain" rings true in a much greater way. Also, staying warm and getting enough sleep certainly helps.

You had mentioned rain/humidity... Do you have a wood stove? That is a real must for me!


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## Jaclynne

RamblinRoseRanc said:


> I've been told the memory foam was a big help. We have a california king bed so I'm sure the cost of the foam would be outrageous.
> 
> Jackie- what meds (herbal or pharmaceutical) are you on? Thoughts on those?
> 
> 
> Btw, y'all..... I just wish this danged rain would pass us by. We've had more of a spring than winter here. All this chilly moisture is wreaking havoc on my muscles. I had one going crazy the other night..... get this.....right about where the edge of the elastic on my bra hits below my shoulder blade. Looked like I was trying to shrug and couldn't quite make it!
> Dh is making progress, though.... whenever he sees me totally wiped out and I mention exhaustion he tells me to go lay down already, then!
> He's also learning if I am danged near noncommunicative that I'm hurtin' BAD. I am normally very talkative.
> It's progress, anyway.
> 
> 
> How is everyone else feeling?


RRR - I take _tramadol_, about 300-400 mg per day, for pain. This drug has been great for me, (no tummy upsets), I just have to keep my water intake up and not wait too long to take it.
_aldatizide_ for edema, I lost 33 lbs the first 2 wks on this drug. My lower legs had been swelling to the point of the skin oozing clear sticky fluid, and my lungs felt like I was drowning all the time - I had a constant productive cough. I don't ever want to give this drug up, it's been a miracle!
_Advair disk _for lung function + oxygen at night My doc swears this is what cleared my lungs, but he's wrong. I forget this drug have the time with no effect either way. I do have to have the oxygen.

I have a whole list of things we've tried or that have been suggested, but I'm managing on this. 

I keep my diabetes in check with diet - and when I'm following the diet (fresh fruit and veggies, no sugar, no cola, and very little bread, lean meat) - I manage my pain better.

My biggest deal is I don't sleep much, can't really lie down more than 4 hrs at a time. So I'm a napper. And since I'm alone now, I can be.

Exercise would help if I could handle it, but I have numerous lemon-size uterine fibroids, so very little standing, walking, or lifting starts bleeding and aching pain. I'm post menopausel, so eventually this is suppose to correct itself. If I were a proper weight there'd be less fat=estrogen to feed those fibroids, so they probably would go away on there own.
I would love to have a swimspa or such for exercise, that's what my doc keeps suggesting.

I pretty much tackle a project one day and go to bed the next - and Theragesic is my best friend.

Weirdly, I was so pleased to hear about 'fibro-fog'. My Mom died of early onset Alzheimer's, so when the brain fog episodes started I was really near a panic. Now I don't worry about what word I'm trying to think of, or why I came into the room, or how to divide or simply add. I just abandon the project and take a nap.


Jackie


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## beccachow

Jackie, don't feel bad. Around here, if I am trying to get a particular dog's attention, it goes like this..."DukeBrandyScooter (who is now deceased, RIP, but still gets named regularly)...Jinx...crud, WHAT is your name?? You, the fuzzy one!! Cricket!!" All while pointing at the offending critter.

I say that with Lyme and Fibro, you can tell me the same joke over and over and I will laugh cause I don't remember the punchline. I read a book two summers ago and got to read it again this past spring like it was the first time. I meet new friends everyday, like my husband, my daughter...


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## Sherry in Iowa

beccachow said:


> Am I the only one who stares at her DH when he is talking and just thinks, "why are you still talking?" I have the attention span of a gnat, and the ability to put words together to answer him sometimes is such a stretch for me.
> 
> Pssst...does anyone else get fibro headaches from the minute you wake up clear until you go to bed? Wondering if this is a FM thing or something else. Daily headaches for about 2 months now, getting super old.


Wow..glad I found this board!

I was like that beccachow..headaches daily. I do have arthritis in my neck with bulging disks. That being said..I douse my neck with olive oil...I also check to see how my neck is laying when I lay down to sleep. You may have to change pillows or positions until your muscles relax in your neck. Really work those neck muscles when you rub olive oil on your neck. It is shocking how much olive oil helps..and it's not a drug. But you have to be diligent and do it daily.


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## Jaclynne

Becky - That sounds about right, my family (who are a great help to me) will just stop and look at me until my misfired words give enough hints they can figure out what I'm talking about.

I'm really thankful I got thru menopause before the brain fog started - can you imagine the frustration?

Well, its raining here this morning and I'm headed out to the library so I can sign and fax a land sell contract back that my nephew emailed me. I have a printer/fax, but I can't figure out how to hook it up this morning, so I'm taking the easy route before I tear something up this morning.

And when I get home, I'm going to plan my new raised garden beds:bouncy:

Jackie


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## Jaclynne

I'm forutnate, I've never had the headaches from fibro. I used to wake with headaches that went away after I'd been up a bit, but the oxygen at night put a stop to that.

Jackie


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## Caitedid

I'm amazed at how much giving up soda and most junk food has helped me, even after only a little more than a week and a half. Feel like I'm sleeping better and I've noticed that the junk I have had hasn't tasted near as good. 

I will second the name problem, I manage a group of 10-15 people at work and I've told them that I've reassigned their names for convenience. I've noticed that especially if I have to come up with a name while I'm thinking of something else, or if the person looks like someone else I know there's about a 10% chance that I'll call them the right name. 

Jackie- When I went to see the doc who diagnosed me for the first time I told her that I didn't care at all what they diagnosed me with, as long as she could tell me that I wasn't just lazy or losing my mind. It's actually been a huge relief to know what it is, and I find that having a diagnosis has lowered my stress level, which makes me flare less.


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## ChristieAcres

Work outs increasing, worked much better easing into it, noticed I passed another plateau the last time I hiked with DH. BTW- I never do any exercise in the morning, only the afternoon, when I am warmed up! I did both T-Tapp and Elliptical today, another hike tomorrow. It was sunny here, felt good to be outside, actually got two small beds weeded & prepped. On the Olive Oil massaging? I massage my own Comfrey Oil (made with Extra Virgin Olive Oil) on my neck, hands, and feet every night. On occasion, I have my DH rub it on my back, too.

For those of you who haven't heard of it, here is the Paleolifestyle diet:

http://paleodietlifestyle.com/

Also, for those who can still workout, but need one that is no-impact? http://t-tapp.com

For self-treating, I would highly recommend Comfrey, so you can make your own soothing compresses.


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## Our Little Farm

I do the elliptical too Lori, and do a lot of hiking. I find it helps me a LOT.


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## Caitedid

How do y'all deal with memory problems at work? Not sure how much is me forgetting and how much is the boss not telling me stuff in the first place, but I can change my actions a LOT easier than I can change hers.

On the up side, did find some great bras on the recommendation of a coworker. Danskin seamless sports bras from Wal-Mart. They're some sort of microfiber and pull over, reaching farther down your stomach than most (more like those Genie bras). Not the most supportive, but not making me want to rip them off ten minutes after I put them on either.


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## DamnearaFarm

Jackie- the only med I can comment on is the advair. I used it when my asthma dang near killed me. It worked great. 
I agree that swimming can help- the only exercises my doc has cleared me to do with my issues is swimming and yoga. Still haven't started yoga yet....

Ya know....I don't seem to have issues with names. It's stupid, ordinary regular ol' words that escape me sometimes. Most often when I'm having a flare. 

I have to tell ya.. I once read a message board where this woman with fibro was talking about having conversations with her mother who has short term memory loss. She said if they are talking about something and they're interrupted, neither of them can remember WHAT they were talking about so they just start a new conversation!


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## DamnearaFarm

Caitedid said:


> *How do y'all deal with memory problems at work? *Not sure how much is me forgetting and how much is the boss not telling me stuff in the first place, but I can change my actions a LOT easier than I can change hers.
> 
> On the up side, did find some great bras on the recommendation of a coworker. Danskin seamless sports bras from Wal-Mart. They're some sort of microfiber and pull over, reaching farther down your stomach than most (more like those Genie bras). Not the most supportive, but not making me want to rip them off ten minutes after I put them on either.


I no longer work but this worked for me when I did and now when there's anything I need to remember... notes. A nice notebook (or in my case, tons of legal pads) with everything important written down as it happens.


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## txplowgirl

Oooooooh, I found out the other day you don't take 2 Flexiril with 2 percosetts, at least for me anyway. :yuck::hysterical::banana::happy2:

I was doing good to be able to walk and talk at the same time lol


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## Caitedid

Plowgirl- A coworker told me the other day that she can't take Tylenol at work, because it just makes her feel too bad. Started to crack up when I realized that I had already had a Flexeril, 900 mg of gabapentin, and two percocets before noon!


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## txplowgirl

Caitedid said:


> Plowgirl- A coworker told me the other day that she can't take Tylenol at work, because it just makes her feel too bad. Started to crack up when I realized that I had already had a Flexeril, 900 mg of gabapentin, and two percocets before noon!


:rock::happy2: You rock Caitedid,


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## Our Little Farm

I also take a lot of notes. 
I take my heavier dose of medication at night time, and just take a smaller amount in the morning and through the day. Doing this has really helped me keep more alert and focus. 

'Most' of the time. :hysterical:

Now, who am I? Oh yeah, OLF.


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## ChristieAcres

Caitedid said:


> *How do y'all deal with memory problems at work?* Not sure how much is me forgetting and how much is the boss not telling me stuff in the first place, but I can change my actions a LOT easier than I can change hers.
> 
> On the up side, did find some great bras on the recommendation of a coworker. Danskin seamless sports bras from Wal-Mart. They're some sort of microfiber and pull over, reaching farther down your stomach than most (more like those Genie bras). Not the most supportive, but not making me want to rip them off ten minutes after I put them on either.


I work from home, so I try not to think in the mornings, which the time of day I am least functional mentally. Fitness and diet has helped, but for that first hour or so, after I awake, I don't trust what comes out of my mouth, LOL. To help our finances, I am going to get a part-time job, away from home, but work mornings? :umno:


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## Jaclynne

I'm a list maker by nature, so it was easy to transition to notes for everything. I keep a couple of notebooks going all the time. One at the computer/phone and another I carry about with me.

I actually have more trouble with words than names. And I can come out with oddest substitutes for the word I really need.lol

Jackie


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## Caitedid

Really finding that these changes in weather make me more "fibro-y". Super glad the boss let me leave early today, as I was having a really hard time even being there. Anymore I can tell how bad a day it will be by how hard it is to get out of bed and how soon I'm looking for pain medication. Have had a string of pain pill-free days for almost two weeks, the last two days I've been taking them before work even starts.


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## DamnearaFarm

Yep, weather is a killer for me too, Caite. Whenever the barometer moves, I know it. 

I may be onto something.... I was out yesterday and missed my midday dose of neurontin and lyrica. I took it when I we sat down for dinner around eight or so and then my nightly dose around ten. I slept well and when I had to move anything in bed, I felt mild discomfort but no pain! Now I need to talk to the doc and see which med it was that caused the relief and see if I can't take a stronger nighttime dose. I'll let you know what I find out.


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## Our Little Farm

I actually find cold and rainy weather good. 

15 hr work days not so much. I am beyond tired, so when I go to bed I toss and turn for hours. 4 hrs sleep each night is killing me.


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## DamnearaFarm

And not even four hours of *real* sleep either.  I'm sorry, OLF.


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## Our Little Farm

Hoping to sleep tonight.  Hope I'm not having to work late.


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## Caitedid

I'm fine with the cold and rain too, it's this swinging 40 degrees and from sun to snow to rain to sun in the space of two days that's getting to me. Really been feeling it this week which has led to some serious comfort eating, which I know only makes the whole thing worse. Think I'll ask about switching pain meds when I go in as I seem to have built quite a tolerance to these.


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## MullersLaneFarm

Cold and rain do me in. I have less pain in the warmth. I about drive DH out with the way I keep the wood stove cranked up!! I now which of the wood he rings in burns hot and fast and which burns long and slow.

I have been on the exercise bike more these days and it seems to help keep me awake although the muscles tremors are worse. DH says it is as though a bolt of electricity goes through me ... and I tell him, that is what it feels like.

We don't sleep together for too long. I either recognize my 'muscle spasms' will be too much to sleep in our bed, and then sleep on the couch or in the guest room. Or I go to bed and my spasms wake DH up and he goes on the couch.


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## ChristieAcres

MullersLaneFarm said:


> Cold and rain do me in. I have less pain in the warmth. I about drive DH out with the way I keep the wood stove cranked up!! I now which of the wood he rings in burns hot and fast and which burns long and slow.
> 
> _*If you came to my place, you and I would probably be happily having tea in my living room, with our wood stove happily burning away. We have a heatilator on ours, so our living room is 80F, most of the time :rock: In the evenings, DH is wearing hardly anything :flameproofundies:, while I am sitting there, in a heavy puffy robe, fuzzies on my feet, and covered with one of those soft ploofy blankets rincess: Cold & rain, yep, same issue. Today, it wasn't as humid, but windy and cold. It was harder getting through my elliptical time, but I keep telling myself no pain, no gain... I didn't sleep well last night, so was tired all day, yet managed to be somewhat productive.[/*I]
> 
> I have been on the exercise bike more these days and it seems to help keep me awake although the muscles tremors are worse. DH says it is as though a bolt of electricity goes through me ... and I tell him, that is what it feels like.
> 
> *The more I work out, the less I have the spasms. That must be so frustrating for you!*
> 
> We don't sleep together for too long. I either recognize my 'muscle spasms' will be too much to sleep in our bed, and then sleep on the couch or in the guest room. Or I go to bed and my spasms wake DH up and he goes on the couch._


_

I feel badly for you both! Opposite problem here... I've had to get up and sleep in the guest room due to Len waking me up (he tosses, turns, talks in his sleep sometimes, and snores). None of that would be that big of a deal, except he also cuddles in his sleep. So sound asleep and dreaming, and suddenly, I awake to being hugged with loud snoring in my ear :run: That is where I draw the line! Sleep is so critical to us with FMS, I am hardly nice to my overly sweet sleepyhead Len when he wakes me up :flame:

Last night, for some reason, sleep was elusive until just after 2:30am. I did some reading before bed, which usually helps me get drousy. I've learned to avoid being on the computer or watching tv. I just got up, after not being able to sleep for an hour. So, I'll be offline shortly, to do some more reading, then try it again. If I get enough sleep, I'll be working out harder tomorrow, might tucker me out enough. When I work out, I hit certain plateaus, then have issues sleep, but if I crank it up, back to normal. 

Our Little Farm- 15 hours of work (?) and only 4 hours of sleep, OMGoodness Gal, what is going on? :shocked: You shouldn't be working so hard, remember your health... Today, I just slept in until 10am. I make myself stay in bed for 9 or 10 hours a night, if that is what I need (hoping for 7-8 hours of sleep). Usually that works._


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## Caitedid

Does anyone else have problems with what feels like tendonitis? I think some of it actually is tendonitis and some of it is fibro, but ouch anyway. I know I have tendonitis in my wrist and shoulder, which makes my whole arm hurt at night and when I first wake up. I think it's something about how I sleep, but once you're asleep it's pretty hard to sleep only one way.

I've also sworn off TV before bed, and try to stay off the computer as well. Frequently I actually take a nap on the couch with the heating pad and electric blanket, which relaxes me enough to get a good night's sleep once I go to bed. Plus, I'm really popular with my old arthritic cat!


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## Jaclynne

Sleep has been elusive this whole week. Some nights I'm just going to bed at 4 am, then I'll be up again in 3 or 4 hrs. I'll try staying away from the computer and tv after a certain hr in the late evening, maybe that will help. I do have some sleep meds, but I've been determined not to depend on them.

I've just been in this house since the first of the year. It feels safe and restful here, but I'm having a difficult time settling into routines. This could be part of my grieving process, who knows.

I do know that there is a direct correlation in my blood sugar numbers and the hours of sleep I get per night. So I've got to get a handle on this.

Hope the sun is shining on ya'll today!

Jackie


----------



## Jaclynne

Caitedid said:


> Does anyone else have problems with what feels like tendonits?


Caitedid - I've been having some issues with my left hand, it feels like my two middle fingers are drawing into my palm. I catch myself straightening it out with my right hand or flattening it on a tabletop. Its painful and wakes me up too. I've taken to sleeping with my hand flat on a pillow so I don't curl it up. The pillow deal keeps the hand under the warm covers too, since cold makes it worse.

I look like Napoleon at the computer, with my hand tucked in or under my warm shirt. I tried gloves, but I can't stand anything at my wrists.

I've had carpal tunnel surgeries or both hands, but have no issues with the right hand now. Maybe its just arthritis.

Jackie


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## DamnearaFarm

Before I started all the meds (so I can't say which one is helping) I also had that....drawing thing going on. In my case, it was my left foot and oddly enough, my face. I could actually feel the muscle tighten and try to pull around my mouth/cheek area. 


Odd that y'all are talking about tendons.... this is the second morning in a row I have woken up and the tendon running from behind my ear down is sore to the touch. The slightest touch feels like great pressure. It's odd......

I had a thought last night while trying to go to sleep. BTW, we go to bed around 10:30 and up at 4:45 for DH's work. When I wake up EVERYTHING hurts and I don't feel rested at all. Some times I require help getting out of bed. The combo of pills I have to take in the morning literally makes me loopy and VERY sleepy. DH leaves for work at 6:30, I get the kids up at 7:00 and take them to school thirty minutes later. I take those meds right before I leave the house. By 8:30 or so I have to lie back down. When I get up around 10:30 or so I feel a LOT better and much more rested. The only difference in what pills I take from the morning meds from the rest of the day is the Pristiq. Seriously thinking about taking it before bedtime.......
The thought that hit me last night is that I do MUCH better if I get a morning 'do-over' later in the day.


----------



## Caitedid

I've been having the CRAZIEST dreams all week, think it's from falling off the healthy eating bandwagon. I've been having to take naps just to get any sleep that feels restful, but I'm sure that keeps me from sleeping as deeply later. 

I was also getting that drawing feeling, in a muscle under my right shoulder blade. Felt like the area had been Novocained and was getting ready to leave the rest of me.


----------



## Caitedid

How do you deal with fibro flares when working outside the home? I'm going to talk to my doctor about this next week, hoping I won't get in trouble AGAIN at work. Boss changes her mind constantly, then gets angry because I don't remember what the last iteration was of what she wanted. 
Took yesterday and today off due to a mega flare and med problems, had to claim vague stomach problems again. No way the fibro thing is going to fly as a long-term deal. I'm 30, have already cut my work hours from 80+ to 40 a week, and I'm not sure how I will keep doing this. Thoughts?


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## Our Little Farm

To be honest I find an elimination of trigger foods and LOTS of exercise do help. Obviously you still get a lot of pain, but for me it works. 
A good nights rest is essential.


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## Caitedid

It's not the pain at all, it's the fatigue and fog. I can handle the pain and the problems that go along with that, but not being able to remember what I'm doing unless I do them in the sequence that is in my head is a real problem. I feel like Amelia Bedelia in a bad way!


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## Our Little Farm

I take the majority of my meds at night time and a MUCH smaller dose during the day. I 'should' take more during the day, but struggled with the 'fog' so doc said I could take as I do and it works for me. 

Talk to your doc, maybe you are on too higher a dose? Maybe coming down slightly will help.


----------



## beccachow

Caitedid said:


> It's not the pain at all, it's the fatigue and fog. I can handle the pain and the problems that go along with that, but not being able to remember what I'm doing unless I do them in the sequence that is in my head is a real problem. I feel like Amelia Bedelia in a bad way!


That's me. Too tired, all the time.

This has been an horrific week...found out my stepdaughter, who I went and spent a few days in the hospital with because she was "so sick" is actually drug seeking. Came back home just in time to go to work thursday, one of the owrst work days in recent history, came home from work on thursday to see my oldest gelding down in the field for the third time in three days and made the difficult decision to let him go run free in heaven that night, then my promotion comes through and takes affect on Wednesday so I don't even get the usual days off in between my shifts and I get to start a different shift, all new people, saying goodby to people I have worked with for 8 years.

Too much change, too emotionally draining, too tired to cope. And missing my horse like crazy .


----------



## nduetime

So sorry for your loss Beccachow! I know how hard that is. BTDT. Take it easy on yourself for awhile. Stress tends to make flares come on faster so take a deep breath and try to do some stress relieving things. Even if it is just a warm soak in the tub, it will help.

@Cyndi: Tell Paul: David feels for him. He gets awakened by my muscle spasms as well. So far we are trying to stay int he ssame bed but honestly, it is only because we gave our spare set to the kids.I used to get up all the time to give him a break. Cannot sleep on the sofa or I will not be able to even roll off it in the am. Mornings are my toughest too.

Apparently when the barometer starts moving down, my pain level goes up. That is how it has been lately anyway. I am in the midst of a flare so i cannot spend too much time on the computer or any such thing. Gotta keep moving or I find it really hard to move again.

Work outside the home. Had a nice opportunity come by and had to turn it down...again...it is ok. Know thy limitations. I guess it is better to save my energy for my family and try to pinch pennies elsewhere than to be tied to a job that does me in.

I am hoping/praying that this flare ends in time for trail rides this summer. Might have to just bit the bullet and go anyway. I wont let it stop me from doing everything...sides I can always spend the next day in the hot tub....giggle...naked...eat bonbons...and watch romantic movies. Hmmmm, maybe I will ride tonight...lol


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## Our Little Farm

Trish you have me laughing hard. Why not skip the ride and just head to the hot tub, eat bonbons and watch a movie?

Beccachow, I am so sorry about your horse. 
I hope work goes well for you and you have a supportive team.
Hope your stepdaughter gets the help she needs to fight both of her illnesses. ((hugs))


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## whiskeylivewire

I went to the doctor the other day because of depression, IBS and pain and she put me on Cymbalta. Now to see if it does any good.

I also upped my vitamin intake. I'm now taking Calcium, Magnesium and Zinc; Biotin, Cod Liver Oil, D3, B Vitamin Super Stress Complex and Kelp. I felt pretty good yesterday except for being down with a cold. Hopefully I get better though because I need to up my help with chores and household chores have fallen to the wayside.


----------



## Jaclynne

I'll be interested to hear what you think of the Cymbalta. 

My gp and my pain mangement docs both prescribed it for me, but my insurance refused to fill it, saying it contradicted with the tramadol prescript. My docs don't think I take enough tramadol to compound the effects of the Cymbalta. They both say it is safer to add Cymbalta than to up the tramadol, plus getting the depression help associated w/ Cymbalta.

I don't have insurance anymore, but then I can't afford the Cymbalta anymore either. I'd still like to know how it works for you.

Jackie


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## Caitedid

Pretty excited that tomorrow is my first dr. app't in *8 weeks*! It's been literally years since I've been out of the office that long, and certainly since I felt well enough to not be there for that long. This medication is doing a number on my stomach, and I need to talk to her about different pain mgmt. options, but it is definitely an improvement.

Also, realized the other day that when the fibro and arthritis are bad I walk like C3PO from Star Wars. Not really the vibrant, young image I would like to have of myself...


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## beccachow

Cymbalta nearly killed me with exhaustion. I said adios after two weeks of taking it because I cannot handle being any more tired than I already am!!


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## Jaclynne

beccachow said:


> Cymbalta nearly killed me with exhaustion. I said adios after two weeks of taking it because I cannot handle being any more tired than I already am!!


I hate to hear that. I can barely stay out of the napping recliner during the day as it is.

Jackie


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## countrysunshine

I thought Cymbalta was a wonder drug for about 5 weeks. Then all hell broke loose. I had severe vertigo and they said it was an inner ear infection. This was so bad I was just passing out when I tried to stand.

Then the head zapping started. When it was just a couple times a day I could live with it. When it went to every 60 to 90 seconds I was going nuts. Took a couple months before it went away after I stopped the Cymbalta. It took about 4 months after I stopped it for the joint pain, burning feet and anxiety to return.

As much as I enjoyed that reprieve I am scared to death to try it again!


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## Jaclynne

countrysunshine said:


> I thought Cymbalta was a wonder drug for about 5 weeks. Then all hell broke loose. ....
> 
> As much as I enjoyed that reprieve I am scared to death to try it again!


That is very scarey. As much as I'd hate to give the insurance co any credit, maybe their descision was a good thing for me. Of course, their descision was based on greed, so no, I'm not giving them any credit. But I will give credit to this wonderful sharing group here.

I've already refused lyrica, because it scares me.

countrysunshine - I hope you found some relief elswhere.

beccachow - have you tried anything to replace it?

whiskeylivewire - I hope it works for you.

Jackie


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## Caitedid

Dr. started me on scheduled Tramadol to help wean me off the as needed hydrocodone for my back. Also started reflux medication and am working on improving my diet. To say I slept like the dead last night is almost an understatement! I'd rather not be taking all these meds, and have said so to the doctor so she knows I'll want to quit them if/when I can. However, having any part of my life back is totally worth it. Doc got a good laugh Monday when she said that I should find a less strenuous job. I told her that working in a greenhouse lifting on concrete full time was a LOT easier than farming. Apparently that's not exactly what she meant...


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## countrysunshine

Caitedid, my neuro wants me to find a job with a different works schedule. I work 12 hr rotating shifts. I pointed out that driving further is harder on me than the changing schedule is. I am not sure he agrees but I know I am right. So, I continue this nonsense.


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## grammea

I am almost in tears right now because I have so needed a group like this!
While my doctor diagnosed me with fibromyalgia,she doesn't seem to know all the symptoms herself!
I have been complaining of the burning feet sensation for awhile.
All she asked was if it interfered with my sleep!
I never knew it was yet another symptom of fibro.
I am off to read the entire thread.Thank you all!
God bless,
Helen(grammea)


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## Caitedid

Helen- I also find this thread SO helpful, as it is full of folks who aren't letting their conditions run their lives. 

Found out yesterday that my local pharmacy does consults to make sure that none of your meds are interacting negatively. I made an appointment Friday to go in, as they can also answer questions about vitamins and that. I think it's absolutely worth paying slightly more than I would at Wal-Mart to know that my pharmacist cares about my health.


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## Caitedid

Not sure if I posted this here already, but I have a good bra recommendation for the fibro ladies. I'm having a really hard time with underwires, thin straps, tight bands, etc. Found Danskin seamless sports bras at Wal-Mart that are really comfortable. They're not super supportive, but I found that if I go down one size they do pretty well. I'm pretty well endowed, so I wouldn't wear one to go running or such, but they're great for day to day stuff. Also, 2 for $10 is hard to beat.


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## grammea

Have any of you lost friends due to your inability to keep up with or keep plans with them? 
I just don't have the energy and she is thinking I am blowing her off.
What can I do?
God bless,
Helen(grammea)
PS Thanks for the bra tip!


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## Caitedid

Helen- I have lost friends, but most of them have been the more acquaintance type. My good friends are at least making an effort to understand what's going on. I also sent many of them this link. http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/ It explains the fatigue and all quite well. 

I also make a real point to come up with things I can do, then find ways to involve people in that. I find that if I stick to a schedule things go a lot better, so I try not to take invitations for things at night during the week, and only for one weekend night. At some point you may have to just force yourself to go do things. 

Good luck and good health! Caite


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## DamnearaFarm

Welcome, Helen. 
Glad you don't feel so alone and especially glad we can help. 
This can be a lonely disease, that's for sure. 
Totally seconding Caite's link.... the spoon theory is sometimes all that makes sense for some folks. Honestly, sometimes letting them see through the mask or the careful front you put up can help. If this person is truely a friend, seeing you in pain should stop all supposition about WHY you're not able to keep up. <<<gentle hugs>>>

Closing in on the end of a rough week. On the 3rd, my best friend's husband came home from work and found her dead on the kitchen floor. Only 58 (i'm 35, btw) and dead of a massive coronary. She'd been my best friend for almost 18 years. Spent all day with him and their family. My cell phone froze up Sunday evening and wouldn't work at all. Tuesday was her memorial service- her casket decorated with a saddle i'd loaned that they covered in flowers. I did up a poster sized photo collage that was displayed on an easel. The funeral home does up a dvd that shows still pics of the deceased accompanied by crappy muzak. That was HARD.... seeing that smiling face for the last time. She looked like hell in the casket... due to the nature of her death she was PURPLE and it was easily visible under the artfully applied makeup.
Friday was the inurnment (which is what they call the burial of an urn, I suppose). Wasn't so bad because it was just a little white box displayed, kwim?
----ed pig rooted under the fence because my 19 yr old DD forgot to turn the electric fence back on. Chased him for hours last night. In bed around midnight (including the time change) and up at 4:45 to make breakfast and get DH off to work. Wake my 19 yr old at six to get ready for work. Wake one of the extra kids (we always have extras during the weekend and summers) at seven. Put up dogs and go out to see if I can catch the pig while DD waters the critters. Off at 7:30 to take her to work. Back home and manage to get the pig (along with a few horses) into the goat's paddock. Goats go in the stall already occupied by my deceased best friend's NZR buck, who is waiting on me to build him a hutch. This stall is alongside the one that currently houses the throwaway bassett cross someone dropped at DH's site a few weeks ago (anyone wanna great dog?). Open the goat's door into their barn stall and scatter corn hopin' the pig goes in. 
Nope.
Tried to lay back down but the phone kept ringing and texts were going off. Back up to go get DD from work and with the help of my 13yr DS and two more extra kids we manage to get the pig run into the goat stall. Then the rodeo began. 
Ever dropped two belly ropes on and then dragged a p!$$ed off pig that weighs 200lb? Don't recommend it. If i'd only thought of taping the noise I could have gotten rich selling the soundtrack to the maker of horror films.
Got it done, though. Gonna pay for it. Already paying for it, despite the long soak in a hot bathtub and the fact that I am writing this while wrapped in my heated blanket. 
Can you say 'flare city'?
Eep.
Is it Monday yet?


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## Caitedid

Rose- So sorry to hear about your loss and about the rest of your crazy weekend. I spent an hour and some trying to get a 500# Berkshire sow off ice last year, you want to see futile! 

I've been having strange flares too. Does anybody else get that feeling like a cell set to vibrate is going off in various parts of their body? My shoulder has been buzzing since Thursday. 

On the upside, started treatment for GERD and am feeling much better. Between the meds, the stress, and the hiatal hernia I was pretty poorly off. $5 for 90 pills and feeling good.

Have PT for the first time tomorrow, wish me luck. I know that if I lose weight all of me will feel a lot better, so hopefully they'll have some good thoughts on how to accomplish that. Doc switched me to scheduled Tramadol, trying to decrease the hydrocodone use. Feeling better, except for not knowing what to expect as far as loopiness. Have been on the hydrocodone long enough that I have the timing down to an art!


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## Sherry in Iowa

Oh my Rose..I am so sorry about your friend. Three or four weeks ago, my best friend told me she had a mastectomy and had to start treatments. The next morning my Mom called and I had to drive her and her 16 year old Miss Molly dog to the vet to put Molly down. They had been together for 14 years, got her when dad passed. I couldn't believe it..I had a flare like nobody's business for a week after. So please take good care of yourself.

Caitedid..I hope your flare is a short lived one!

If anyone is interested..I wrote an article about fibro and vitamin D deficiency..if it helps you..I will be very pleased.


Vitamin D Deficiency and Fibromyalgia: Lessening the Pain and Depression


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## mountainwmn

nduetime said:


> I am hoping/praying that this flare ends in time for trail rides this summer. Might have to just bit the bullet and go anyway. I wont let it stop me from doing everything...sides I can always spend the next day in the hot tub....giggle...naked...eat bonbons...and watch romantic movies. Hmmmm, maybe I will ride tonight...lol


I could hardly ride at all, switching to a little paso fino helped a ton with the amount of time I could ride. And hitting the hot tub that night helps with how I feel the next day. Of course you can always spend the next day in ther too..... The hot tub is the best money I ever spent. Works better than any meds, diet, or exercise program I've tried.


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## DamnearaFarm

Thanks, y'all. 
These warm days make me hopeful that it will continue without any really cold snaps. I can't wait to be able to do things again. 

Oh...good news... I was approved again for the med program through Pfizer. You have to reapply every year. Since the doc added Lyrica to the lineup (and they make it) that makes four I get through them. 

Hope everyone is flare free for a while. 


Oh... almost forgot to answer Caite's question. I have thought my phone was buzzing when it wasn't in my hip area. Felt burning that was so site specific it felt like someone was holding a lit cigarette to the spot. Never had anything else buzz though.


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## grammea

Thanks for the welcome ladies!
Rose I am so very sorry to hear about your friend.
I am having a fairly good day today,thank God.
I would like to try Lyrica but my insurance doesn't pay for it.
Uggghhhh! If they would pay for some things they would actually be paying lots less for my care!!!!!
Beautiful day here in RI today and I am going to try to get out to the thrift shop while my energy lasts.
Gentle hugs and prayers to all my new friends!
God bless,
Helen(grammea)


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## Sherry in Iowa

Caitedid..I am so glad you asked if anyone gets "buzzed". I thought I was going just a little bit nuts. For me, it takes turns in my legs. There's no set time or activity that seems to set it off. It kinda drives me nuts if I am trying to go to sleep.

Again..thank you for letting me know I'm not the only one. I find that it's comforting when you find someone else is experiencing some oddity..


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## JohnnyLee

Why have I not seen this before? Guess I spend my time off in other forums too much. I was diagnosed with Fibro in 2002 and have been living with it ever since. About 3 years ago, my brother who once though it was a bunch of hooey started getting the symptoms which, as I have read, is thought to be hereditary. I have to go now, but I will check in here and read more when I have more time.


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## Caitedid

I've had that buzzing in my left shoulder almost constantly since Sunday. Feels like a phone on vibrate, or a cat purring deep in the joint.

Been seeing a Physical Therapist who is giving me all sorts of exercises and TENS treatments for my back. Looking for a home TENS unit, in hopes that it might help decrease the amount of pain medication I'm on.

Boss told me today that I shouldn't waste my time on so many frivolous dr. appts. Almost lost it, as the appointments are an attempt to keep me able to work as long as possible. Plus, my company promised insurance when I started and 5 months later haven't seen hide nor hair of it.


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## Caitedid

Was thinking it might be fun to have a "You might have fibro..." game.

You might have fibro: if your ponytail hurts!


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## nduetime

You might have fibro: if you and your dh place bets on where the next muscle cramp hits!



BTW: Does anybody else get the itching hands and feet at night....so bad they keep you up for days? I know it is just nerve endings...had the Doc check everything out just to be sure. Drives me nuts sometimes.I have even walked barefoot in the snow trying to reset the nerve endings. (I know, not too smart when i already have Raynaud's)


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## Caitedid

I get the itching on my legs and face.


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## whiskeylivewire

I don't know if the Cymbalta is helping or not...had a major pain day yesterday brought on by lack of sleep and marital problems/stress. 

Milking goats is painful but we have the udderly-ez milker so I don't have to do as much by hand.

The worst part about fibro for me is that DH has no idea what it is...he has said, and I quote, "isn't that what they say someone has when they don't really know what's wrong with them?" Grrrr. 

The worst part about fibro for me is being so tired all the time and then the kids not understanding why I don't feel like playing. 

Cymbalta made me tired for the 1st couple of weeks and then it stopped. It also made me sicker than a dog for a few days. I don't know that it's helping so I'll probably just stick with my vitamins, alter my diet and try and take a nap during the day.


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## Caitedid

Rejoining the gym tomorrow after three years off. Pray for me! :sob:


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## whiskeylivewire

I got off the cymbalta while the getting was good...I read of too many people having major withdrawals. Can't really tell a difference being off of it now.

I'm sore as anything today from pitching to the littles on my baseball team last night. Ugh, I'm sure it'll get better though


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## Our Little Farm

Hugs to you Whiskeylivewire.


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## beccachow

I regretfully inform my group that I will be going to my pain management doc tomorrow to see about going back on Lyrica and get those wonderful little Bail Out pills (low strength Vicodin to take as needed).

I never really noticed stress affecting this disease, it would flare and then go away witht he minor stresses of day to day life. But this time over the course of a few weeks:

Rumors of being promoted at work, pulled off my shift and going to a new shift and district started with the headaches.

Step daughter in hospital, headaches worsened. Enter brain fog.

Putting my wonderful old Arab to sleep, headaches to migraine proportion, brain fog now a brain stew, started cramping intermittently.

Received promotion, uprooted: joint pain, more severe and frequent cramping, brain no longer in evidence as having existed at all. 

Parents (most of you know the story from CF): Cramping all over, one sided neck pain, started dropping everything, had to turn down some freelance work because I can't think at all. Head is now a good place to store my hair, otherwise, no other uses available right now.

Latest rumors at work about DEmoting the newer promoted folks, like me. Can hardly move, can't sleep. Roving pain with some deeply seated constant pain in right shoulder and neck. Odd tingling in fingers, can't hold anything. Restless leg syndrome ensures I will never sleep again. Breasts hurt like crazy.

All the pain falls into one of three categories: aching (constant) in several areas, roving stabs near joints, and my personal favorite, the sponge-like wringing of the muscles that hits without warning, builds until it feels the muscle is twisted on itself like wringing a sponge, then disappears only to reappear somewhere else.

Usually, the flares are easily ignored and I keep on keeping on, but I surrender. I am gonig back to the guy who helped me out several years back when the lyme and fibro were strolling hand in hand through my life.


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## Sherry in Iowa

Gee, I am really really sorry to hear that you have flared so bad. For me, stress and lack of sleep can put me exactly where you are. The big difference being..I am blessed not to have to go to work every day.

I don't use drugs because I'm a big sissy and even Tylenol makes me weird. That being said, I truly think that everyone has to do what they have to do. Maybe you can get off of the stuff when things calm back down again.

Please take extra good care of yourself and baby yourself whenever possible.


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## beccachow

I do ok with narcs, my job puts me face to face with the results of addiction daily. I had 3 left from a bottle of 30 filled two years ago and finally took the last one last week. But I hate to take meds, even Tylenol like you said. I tried a leftover Lyrica a few weeks back and holy SMOKES...it was the strongest they make and I stupidly thought I could just start taking it. After I threw up and the room stopped spinning I was so high I had to go to bed. Now I am afraid to start it again even on a low dose!!!


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## Sherry in Iowa

I think I am finally coming out of this last flare Becky. I don't exactly know what brought it on.. a little stress, not getting my sleep and not doing what I do to keep these things all at bay..lol.

Don't know if this will help you shed some of the weirdness..but I am more than happy to pass it along.

SLEEP..easier said than done. My shoulder blades and shoulder get chronic on me..I started sleeping on the floor and couldn't believe how much better those two things have gotten in the last two days.

Water~I really got slack on my water drinking. When I do..my pain increases and my brain leaves me.

Vitamin D~Really helps my pain. 

Vitamin C~Helps everything..lol.

Ditch the sugar.

Olive Oil~Olive Oil~Olive Oil After three days of massaging olive oil in my neck and shoulders..the pay relief is unbelievable for me. I also think it helps my brain freezes..lol.

I pray you have a recovery from your flare soon.


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## Caitedid

Becca- I have found great relief with gabapentin for the nerve pain. I also take Tramadol on a schedule to help keep me off the Percocet prn for my back. Doctor said she thought a lot of the problem was rebound pain from when the meds wore off, and that I was waiting too long to take them. Taking a low dose of a non-narcotic regularly is a lot better than waiting for it to get hellish and pounding back a bunch of narcotics. I have a TENS unit for my back that the PT said I could use on other places for fibro pain. Haven't tried that yet, but it might be worth a thought for some of you. I know it does absolute wonders for my back (when I can get the darn thing to stick).


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## beccachow

Interesting about gabapentin. They have my oldest GSD on it for his DM. It seems to slow down the misfires along his spine. Hmmm...I might bring it up tomorrow! I am beyond tramadol now, I had been taking it all along.


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## Our Little Farm

I take Gabapentin for Trigeminal neuralgia (Tic douloureux), and nerve pain down my right side due to old injuries, as well as Fibro. It is the only thing I have found to stop nerve pain.


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## beccachow

Doc didn't want to do the gabapentin; he put me back on Lyrica. Low dose, next week increase dose, etc til I am back up at full dose. Took one and already feel less pain, although a tad loopy. Last night was bad, all I could do was lay on the couch.


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## Caitedid

Becca- Did he say why he wasn't going with the gabapentin? Just wondering... I've had a lot of trouble with sciatica and peripheral neuropathy, and it's definitely helped with those.


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## beccachow

He said it was a money thing, really; I am not sure of his exact thoughts on the med, but he sort of shrugged it off and said something about generic meds vs name brand lyrica. If I had a clear head I might have understood!

I felt relief from the first pill; even ran in the park after a ball several times. Amazing difference already.


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## Caitedid

Do you have insurance to cover the Lyrica? Gabapentin runs me $14/month.


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## beccachow

I do; he also had samples and a coupon for the co-pay. I think that is why he wanted to go back to the Lyrica. I am definitely keeping Gabapentin on my mind should the Lyrica not work, it has done wonders for my old doggie. 

He didn't give me any vicodin, though. Surprised by that, but feeling so much better with the Lyrica. Last time I was a total mess with arthritis caused by the Lyme mixed in with the Fibro, that's why he gave it to me then I think. Don't care, feeling so much better I think I might even be able to sleep tonight. 

I had 14 out of 14 trigger points. I hurt so bad when he was testing them I teared up. Then they were all on fire from him setting them off and DD kept poking me to see me jump. Doc lectured her, lol. I almost killed him when he shined that bright light in my eyes!!


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## nduetime

Beccachow - I am praying you feel much better real soon.

Flares suck...I am in one as well. Too much stress i imagine. I have been getting in the hot tub a couple times a day. My hips are just as painful as can be and trigger points are out of this world. I rode the other day anyway. Had a horse that misbehaved with a new rider and had to get his head back on straight. He and the rider are both doing much better now. I just went to the hot tub afterwards. Moving stiff and slow but at least I am still moving. I think that is my new mantra..."just keep moving, just keep moving" I sound like Dorie on Finding Nemo, lol! Hey, whatever works, right!


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## countrysunshine

Love the Dorrie mantra. I have the same one.

I fell last Tuesday and things have gone down hill from there. It feels like one step forward and two backward. Dr has me on something for muscle spasms right now but it stopped helping. So....

Hope everyone else is doing as well as they can.


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## beccachow

The difference is unbelievable. For the first time in two years, I got on the playground equipment with my DD. I chased her around the playground. I have patience again. Even DD remarked this AM "Mommy you are in a good mood." Makes me feel bad to see how this affects her. 

The Lyrica is giving me a slight energy boost, too. And I slept last night, really slept.

I hope you all start feeling better soon. CountrySunShine ask your doc to prescribe a different muscle relaxer. You do get used to the med and it loses effectiveness.


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## Caitedid

Becky- I totally agree about the difference in personality when you're actually being treated correctly. I no longer want to end people in the grocery store when they block the aisle, I leave the house for fun, and I can usually think pretty clearly. This is such an improvement from where I was last summer. I don't know how much is from treating the fibro, how much is from actually sleeping, and how much is from knowing that I'm not just really lazy/crazy, but I guess it doesn't matter!


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## nduetime

I was able to play on the playground equipment with my 3 and 4 yearold grandsons yesterday. It was soooo worth what I have today. They had so much fun and the smiles were well worth the time and energy. Sometimes, just being able to be "normal" is really worth feeling a little pain and fatigue the next day. Problem is that we all want to be "normal' all the time. It is hard to say no to those little smiling faces, especially when we really want to do things with them. Yesterday was a great day!!!&#9829;&#9829;&#9829;


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## DamnearaFarm

<<hugs>>> to all y'all who are flarin' right now and big kudos to those who are able to 'be me' again 

Saw the doc last week. Back pain may be Degenerative Disc Disease....my brother has it and has had multiple surgeries and such. Since I have no insurance, I can't even get an MRI to confirm. Doc added another dose of flexeril so now I'm up to 50 (yeah, fifty) mg a day. Honestly can't tell if it's helping or not.

This weather is treating me well (until it rains and then pains shoot up and down on my shins. What's up with THAT?) so what do I do? Something pre-fibro me wouldn't have had a problem with.....

Our oldest daughter had a few days off work so we decided to trim some of the horses. Her job was to pick out the hoof, she'd hold the hoof up, I'd trim and then spray with iodine. First horse was pretty easy (I'd set a reasonable limit of one horse a day so I could be sure I had enough 'spoons' left for the other things I have to do) so my stoopid self said 'Go pull Fred, he really needs trimming'. He comes in fine, lets me do the first front foot fine, get the first back foot cleaned out and halfway trimmed. He started acting up so I looped a lead around his hock and used that to hold his foot up. He absolutely spazzed out- there was a big green snake eating his leg! Once he finally calmed down and stopped moving, I took the snake off and quieted him, stroking his shaking and sweaty self down. Finished the foot and moved to the other front. Fine with it. Moved to his final back foot and got ready to trim...... then all heck breaks loose and it was ON. My only mare was out in the field with the rest of the boys and started calling Fred. He was goin' nuts trying to get to her. Rearing, pawing, dancing... you name it. If a horse could do it while snubbed to a post, he did it. Finally had to bring the mare in and tie her next to him where she promptly took a nap. Finally got him finished and limped to the house. I *knew* I'd overdone it in a big way- getting slung around and then the actual work of the job. Right into the tub to soak until the water turned cold. Back out and wrapped in a heat blanket. Meds taken, of course. It did no good. I literally hurt so badly I thought I'd puke. Next day wasn't as bad but it was a stay in bed (well, between farm chores, house chores, totin' youngins to work and school and back again) day. 
I can still feel it and you can bet your rear I won't do that again.
Ya know... I really wish fibro came with warnings..... some small sign that you need to stop what you're doing to prevent a flare. Obviously I knew I was going to hurt from trimming even one horse but it had to be done. 


BTW- I've gone off aspertame and really didn't know if there was a difference. (Diet Coke (gag) with Splenda, Diet Rong (double gag. Nothing Rite about that soda!) and Pepsi One are all aspertame free) Forgot and ordered a Coke Zero at Chikfila and OMG... I felt like crap within an hour of drinking it. 
We're also dropping our carbs waaaay down (I miss you, potatoes!) and that seems to have helped too.


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## Caitedid

Rose- I think it would be nice if it came with penalty flags like they use for sports. A yellow flag for when you're about to do something you'll regret, a red flag for when you're about to do something that'll make you wish you were dead.

I have a lot of back problems too, and have found great relief with my TENS unit. Unfortunately there seems to be absolutely no way to keep the electrodes stuck at work. Of course that's when I really need it...


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## nduetime

Warning and penalty flags...definately! 

Already in a flare and sore from the playground on sunday...i absolutely had to mop my floors today. Naturally, we have carpet in the bedrooms only so it was a big job. My back and hips are throwing flags at me like crazy..lol! I think a muscle relaxer is in order tonight and a long soak in the hot tub. G night all!


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## countryfied2011

Hi, I am Cheryl and I have Fibro! 

Just noticed this forum and hope I can join in on the fun..(saying sarcastically). Sometimes you just have to laugh about it or you will cry. I have had fibro for 16 yrs( I am 56), it took a couple of years to get a final diagnosis after all the testing for Lupus etc, 16 yrs ago it definitely was an "its all in your head thing". I also have chronic interstitial cystitis,insomnia, IBS, and RLS. Two years ago I was in a car accident, lost control of my truck on black ice and hit a tree head on, totaled truck, broke my femur completely off my hip, had 3 surgeries in 1 1/2 yrs the last one being in March 2011 with a total hip replacement. I walked around for that 1 1/2 with a broken hip because it would not heal together--hence the total hip replacement. My hip is doing great now, no pain what so ever. Maybe I need a total body replacement 

I have tried everything under the sun for my Fibro from Lyrica, Cymbalta to name a few, narcotics, muscle relaxers, sleeping pills,vitamins,no gluten, etc etc. What I have found that isnt a cure, but sure makes my life manageable is less stress and a good nights sleep. Working the graveyard shift doesn't help....lol But I have been doing that shift for 17 yrs, I am glad I have a lot of vacation built up where I can take a day off to catch up on sleep when need be. I have learned to say NO when I have to. Vitamins that I take now are Vitamin D, and magnesium and occasional Vitamin B12. I take Lunesta and a muscle relaxer when I go to bed and I have Loritab when needed for pain. What I eat does effect how I feel, too much sugar and or carbs will effect my levels of pain and the fibro fog, but I am not always good with that...since i love both! And I have nobody to blame but myself because I know I will suffer later for it. I do try and eat as much anti-inflammatory foods as possible and try and avoid the inflammatory foods. I have also found that Lavender is my best friend for stress and sleeping. I have a hand held massager for my trigger points, plus a DH who will occasionally rub when I need it. 

Sitting or standing for long periods for me can aggravate the fibro, so i have to alternate sit and rest for awhile and then get up and start doing something. I keep a stool in the kitchen when I know I am going to be standing a lot. My occupation is a lead computer operator so there is a lot of sitting, but I am lucky because I can get up, go for a walk, stretch etc. We have a farm which doesn't let you lay in the bed too much and there are so many days in the winter I wish I could just hide under the covers but cant...lol Wintertime is my worse enemy...I go out to feed critters with like 4 layers of clothes and I live in TN, then come back in and jump into a hot bath. I cant imagine living in a colder climate. I also learned that the less activity that I do, the worse I feel so even on those days that I feel bad, laying in bed will make it worse.

I feel really bad for those who are just starting out will keep ya'll in my prayers that you find what works for you soon. It took me a long time to learn what I can and cannot do, what works and what doesn't work. This is an individual disease and what works for one, might not work for another so that makes it so much more difficult. I also pray for those whose family members dont understand especially the spouses, DH doesn't quite understand but knows and sympathizes when I am having a bad time with it. He knows when I say NO I cant do anymore.. that he needs to back off and let me rest, or chill and we can finish whatever we need to do or what project we have started at a later date.

My daughter who is 34 was diagnosed a couple of years ago, she would start complaining about certain issues and I told her I thought she had fibro, she finally took my advice and saw the doc. She too has found that stress and not getting a good restful sleep will make hers worse, cold causes flares for as well.

I hope this hasnt been :tmi:, sorry for being so long. Sending a cyber hug to all of you because those dont hurt as bad as a physical one does sometimes..lol

Edited to add, I just read about Sleep Mineral II, on another HT thread, I have order a bottle. Has anyone else tried this yet? I will let yall know how it works or doesn't work for me...hoping it helps. The Lunesta sometimes works and sometimes doesn't, I have a hard time shutting my mind off..lol


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## Caitedid

Cheryl- Really sorry that you have a reason to come join us down here. I have also found that sleep is the absolute best thing I can do for myself. Also, trying not to stress about my health, especially the mental fog. Seems the harder I try to remember and think more effectively, the harder both things are.


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## Our Little Farm

Finding something that helps you relax, helps you de-stress, unwind and so on is what helps me. I walk, a lot.


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## countryfied2011

> Also, trying not to stress about my health, especially the mental fog. Seems the harder I try to remember and think more effectively, the harder both things are.


I hate when the fog hits, it doesnt happen to much but it drives me nuts...I know how DH feels when he gets "lost in space" DH has parts of stages 3 and 4 of Alzheimer's so we are both are walking around in circles around here on the farm at times...lol Good thing the animals dont mind..



> Finding something that helps you relax, helps you de-stress, unwind and so on is what helps me.


What helps me is fooling with the animals...i can be in a lot of pain or really stressed and all i have to do is go out and start fooling with the animals(and yes I talk to them..lol)and all of a sudden i realize I no longer hurt. DH laughs at me because I am always talking to one of the animals....sometimes he will sneak up on me and hide and answer like he was one of them.. We live on the crazy farm


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## beccachow

Hi, Cheryl. Welcome aboard! Doesn't it make you feel better knowing there is a bunch of us getting lost in stores, in pain, and sleepy as heck??

Well, the low dose Lyrica stopped working quickly and I had to up the dose several days early. Still dropping things and being remarkably stupid.

Carp, i had something else to say and forgot it.

Ahh, now I recall. Our 9 month old puppy is a jumper, I cannot break her of it no matter what I do and I have tried everything. DH thinks I am mean to her when I shove her and yell, he doesn't get that she manages to plant those paws in almost every low trigger point I have, and I am covered in bruises (any one else bruise easily?) from her.


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## rainy5

I use to bruise horrifically. I am so much better now. GO to my post I am telling you A whole different life now. you must work threw a little pain slowly. walking, bike riding. eating organic and finding foods that trigger your flares. yes stress will trigger flares. get coconut oil. water tons of it. I am off all medicines but zyrtec. Weather can even trigger flares. My son climbed up on my lap hit my eyebrow and I had a shiner black eye. I bruised that bad. You have nothing to lose and everything to gain by trying what helped me. Any questions just ask. My 16 old son has signs. foods he is allergic to will trigger symptoms in him.


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## whiskeylivewire

I have been in sooo much pain this week! 

I went off the Cymbalta which sent me into a major depressive cycle for a few days. I think it was all the emotions I didn't feel hitting me at once!

The doctor had given me samples of Viibryd so I tried one of those at night...uh, not good. Apparently she forgot to tell me to take it on a full stomach or it can cause severe nausea/diarrhea. Well, I just got the nausea but it was enough to keep me up all night. 

I haven't been sleeping very well at all. I am so very sore and my muscles in my hand keep cramping(from milking I'm guessing). I coach DD5's baseball team and pitching to 12 little ones really hurts the back. I can barely stand right now without pain-I can actually feel where the bulging discs are on my back...a lot of pressure and pain.

So, now I feel like I'm whining. I know I'm really not(that's why we come here, for support right?) but ugh. Allergies have been horrible as well. I've been taking meds for that too and I don't really want to take my flexiril on top of it so I've just been doing 800mg of Ibuprophen. I'm out of my Ultram, I guess I need to refill that soon!


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## countryfied2011

> So, now I feel like I'm whining. I know I'm really not(that's why we come here, for support right?)


I think there is a big difference between whining and talking about the miseries of Fibro...lol I dont think your whining, sometimes with Fibro it is hard to "Put the Big Girl Panties on" and talking about it releases a little stress 

I use to work with a lady that I would consider a whiner, I learned real fast not to ask "How are you today" 

Whiskey have you tried taking a bath with Lavender Oil before going to bed, or putting it on a cloth and laying it around your pillow. I actually have a pillow that I sprinkle the oil right on. DH and I sleep in different rooms because I sleep during the day and work nights. The lavender oil is not a guarantee you will sleep good every night but it does have a calming effect that helps you relax. 

I have tried both Cymbalta and Lyrica, lasted about a week on both and had to quit...I have never been able to take an anti-depressant, they just really messed with my head. Seems like they make my fog worse. I was also afraid of the side effects and bad reviews about the Lyrica. I still have a few samples of the Lyrica in my nightstand...which are filled with different pill bottles that Doc has tried...I need to take everything to the drug recycle place.

Thanks Becca for the welcome, its good to have folks to chit, chat with about Fibro. 

I notice no one mentioning taking Fish Oil, my doc recommended it for my fibro years ago. I use to take it regularly but then it got so I was constantly burping and tasting fish. I love fish but not that way..lol

I too get the bruising from out of nowhere, does anyone have the ear ringing yet. Mine is awful, and drives me nuts sometimes. Most days I can ignore it but other days I just want to stick my fingers in my ears to try and make it stop!

Its funny I can go for weeks on end with no problems then all of sudden one trigger point will flare.. out of nowhere, hang around 24/7 and then anywhere from a week to a couple of months it leaves as fast as it started. The last 3 weeks it has been in between my shoulder blades and neck a burning, aching,tension that I cant get rid of. And it is all from "STRESS".. DH lost his SF and Mother in 4 months last year and we have been having to go thru all the estate stuff with his family for the past couple of months...it has not been pretty to say the least. With DH having Alzhiemer's I have had to be go between since I have POA. Finally two weeks ago, I turned it over to to our attorney. Best thing money could buy...lol

Hoping everyone has a stress free weekend and that you get plenty of sunshine, warmth and no pain with plenty of :zzz:~


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## beccachow

countryfried, you didn't just STOP taking the Cymbalta, did you???

Yeah, I can't believe the Lyrica makes me a bit high, I don't remember that from when I took it last. Of course, combining one disease that doesn't exist with another that doesn't exist, Chronic Lyme made that entire year a real blast-NOT. I don't recall a thing from DD's second year in this world. I am not even sure I gave her a party for her birthday, I just don't remember.

This SUCKS. Can I say sucks?


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## whiskeylivewire

I take a good cod liver oil supplement to help with fibro and just because it's good for ya.

Becca-I am so sorry, you've really been through the ringer!


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## beccachow

Aww, sweetie, I got nothing in my life compared to some. The fact that my body is giving in to stress sucks (ha wasn't deleted so there) when my brain is fully capable of dealing with it.

I did some interesting free lance work on the very subject of the brain/mind causing illness when it gets overloaded. Very enlightening.

Beautiful day, and I am going out there to live. At least until I drop from exhaustion, lol.


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## Sherry in Iowa

Hi Countryfield..I'd love to try the lavendar oil thing..where do you get yours from?

Thanks!


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## countryfied2011

Sherry, I get mine from a local store but it is made by Aura Cacia, I can usually get the Aura Cacia a little cheaper then the manufacturer at the shop I buy it from. 

Aura Cacia Lavender Essential Oils A-Z Aura Cacia

I have also bought from Purple Scent Lavender but that was before I started buying the Aura Cacia locally. 

Purple Scent Lavender

I put it in my bath water, on my pillow, and sometimes I will carry a handkerchief with me or paper towel with a little on it...lol I think you will like it. It doesn't take much, I got my daughter using it too when she has had a really stressful day at work. I actually buy a 2 oz bottle when i buy and it last me a long long time. 



> countryfried, you didn't just STOP taking the Cymbalta, did you???


Becca, yep I did...I know you arent suppose to but I only took it about a week. I remember when I first found out about Fibro, and they put me on Prozac, I took it about a month and just up and quit it. Dont think you were suppose to do that either. I happened to come across yesterday the last Anti-depressant the doctor wanted me to try called Trazodone which was a year ago, She said it was a newer medication, I lasted one weekend on it. I don't even try anymore.

What I take now that helps when i get stressed is Hydroxyzine. It is non addictive and it is an old timey medication that came out years ago. I have it in 10mg and 25mg. I usually just take a 10mg every so often, when I feel like I am about to explode. 

Here is the description of it:


> Hydroxyzine reduces activity in the central nervous system. It also acts as an antihistamine that reduces the natural chemical histamine in the body. Histamine can produce symptoms of sneezing and runny nose, or hives on the skin.
> 
> *Hydroxyzine is used as a sedative to treat anxiety and tension. *It is also used together with other medications given for anesthesia. Hydroxyzine may also be used to control nausea and vomiting.
> 
> Hydroxyzine is also used to treat allergic skin reactions such as hives or contact dermatitis.
> 
> Hydroxyzine may also be used for other purposes not listed in this medication guide.


I have had a prescription for it for years, they started giving it to me whenever the cystitis would flare, it helps with the distention of the bladder. One day I was talking with my doctor and told her I needed something for stress and anxiety which was non addictive and not an anti-depressant. She said try the hydroxyzine and see if it helps and it does tremendously. You dont take it every day, only when you feel like a panic attack or stress is building. It relaxes you sorta of like a Valium but you dont have all the drug effect that Valium etc does. It doesnt make you loopy..lol I have never had any side effects etc from it, but like I said I dont take it on a daily basis only as needed. She told me just take it when I feel stressed. The 10 mg doesnt make me sleepy but the 25mg will so i dont take those. I use the 25mg for when I am having bladder problems and I take it before I go to bed...lol

Maybe you can talk with your doctor and see if he/she will give you a low dose.


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## Sherry in Iowa

Countryfield .. Thanks! I've used the Aura Cacia spray products before and like them. I will browse through that website and see what I can see!

I take only one prescription..Valium. For anxiety or for when my muscles get so tight that I can't take a good breath. My prescription is for 5 mg 3 x a day. LOL..I crack one in half and take sparingly when I really need them. 

I realize that gutting it out without scripts, using alternative methods is not easy. But when your body reacts worse to prescriptions than it does to the fibro..well, I just can't see taking them. But this is a very individual disease, with very individual remedies to get us by.

I'm really glad I found this on HT and I'm glad you found it too!


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## beccachow

Wondering if Hydroxyaine is related to Benedryl in any way. The one med I cannot take is Benedryl, it makes me hyper and gives me restless leg syndrome so badly I cannot relax and sleep. Wierd, huh? I hear all these folks talking about taking Benedry to sleep and I get so jealous!! I have the same issue with most antihistamines.


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## countrysunshine

Becca, I can't take Benedryl anymore either. Gives me SEVERE, roll in the floor chest pains. Was it you that is taking Lyrica and dropping things? That is why I stopped it. I was on it the day it came on the market but for my migraines. Had to stop because I work with hot, molten material. It is really a bad idea to be dropping glass kettles with material that is 6 or 700Â°F in them.


I quit the Cymbalta cold turkey, too. I was on it for about 5 or 6 weeks. It was heaven until it wasn't. Then it was pure .....

Someone asked about tinnitus. Yes! 

As for the mentioned lavender oil....Umm....no way. I love my lavender bed but I cannot stand lavender oil. It gives me a migraine every time. I just have to stick with the fresh and dried lavender I grow for comfort. Hubby does like it when I have been working in my lavender bed. Added bonus!

The bruises still freak my husband (of 29 years) out but I have always gotten them. So, I don't worry about them.

Tomorrow I have a 2 hour drive to see my onco and I just am not up to it. Has to be done but it will be a miserable day.

Okay, that is my input today. Back to work.


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## beccachow

CSS, I was dropping things before the Lyrica, hasn't gotten any better or any worse.

I ave, however, noted that it might be easy to get addicted to Lyrica...strange since it isn't a narcotic.


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## beccachow

Nearly burnt the house down by forgetting I had DD's grilled cheese on the stove.


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## nduetime

Hi Cheryl..welcome, welcome. sorry you have fibro too!

I bruise really easily too. It is so funny sometimes to read thru and see all the different things we have in common and then to read thru and see all the things we do not share. Such an odd disease.

Beccachow, you can says sucks anytime you want to...cause fibro does.

I started a new exercise today.....get this...Belly Dancing For Fitness! lol! Only in the privacy of my own home. A little too much arm over the head work for me right now but we will see. A half hour goes by VERY fast and you do not even realize how much you did til you stop. It is fun and just for me.

Our weather keeps changing so my aches and pains are trying to keep up. Thankfully, stress is way down right now...Thank you Father for that!

Sleep is a biggee for me. I can never get enough sleep. the Dr calls it Chronic Fatigue Syndrome which often accompnays Fibro. I just do not ever feel like I really slept and find myself realizing in the middle of the night that I have been lying awake for hours and hours. (insert disgusted smilie here!) I hate taking things to make me sleep but after a few days of being up and down there is no way around it. Then I can sleep for 10-12 hours straight. Very frustrating. I am going to try the lavender oil in my hot tub. I have some left from my essential oils that I was using to make soap. i do not think a drop or two can hurt anything.

I am still not taking anything on a regular basis for pain but it is wearing me down. I am going to try aleve again and see if it helps. I really dislike any type of narcotic as they make my fog worse.

Stay well everybody and keep moving!


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## MullersLaneFarm

Trish,
I've been having good results using 3 mg Melatonin about 30 minutes before I go to bed. It helps me sleep deeper and get a good rest.


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## Caitedid

So, saw the doc today and she's not sure that all of this is from the fibro, so she's sending me to Mayo for a neuropsychological work-up. Been having memory problems bad enough that I can't spell my own name, dropping things, walking in to things, putting things in the wrong place. My boss is convinced I'm just really incredibly stupid. Upside is that she rarely asks me for anything, as she thinks I'm too much of a moron to handle it. Downside, the angrier she gets the worse the memory thing gets.


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## beccachow

Yeah, know what you mean about being perceived as stupid. You should see me fumbling around trying to start an IV. I don't mean the actual procedure, I can still do that fine, but getting everything set up I look like a bumbling idiot.

Have you been checked for Lyme, and I mean by BOTH blood tests, Elyssa and Western Blot? You could be like me and have a co-infection/disease walking hand in hand with fibro.

Well, thank you brain fog for almost killing my bunny rabbit. I had hung her water bottle where she couldn't reach it a few days back. Thank God I noticed she hadn't eaten her hay last night and had upended her food bowl without eating the good snacks out of it, and figured it out. Poor baby drank about 3 crocks full of water and drank off the bottle for about 15 minutes. Thankfully I was able to get her to eat, and this AM as I left for work I saw her munching her food.

I am always doing stupid things these days. i also noticed my hands and arms are tingling like crazy.


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## Our Little Farm

I hate it when I want to say an everyday name for something. Like mail box, or a book and I am looking at it and cannot remember what it is called. 

I mean, seriously? How do you explain that to folk. 

Like instead of saying, please pass me a pen, you say please pass me that .....um thing that writes, can't remember what it is called. 

Is this part of my fibro?


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## DamnearaFarm

<<<hugs>>>> to Caite. I hope it all goes well. 

OLF-
Yup. I'm Elmer Fuddin' it too. Instead of "Here. Put this in the fridge." It's "Here. Put this in the rectangular box that plugs into the wall and keeps the food cold."

Very frequently. 

And yup.. when fixin' to do things I sometimes have to walk through it in my mind beforehand. Sometimes even the simplest or most often repeated tasks stump me. 
That's a part I hate. I *used* to be prized for my brain. Quick thinker, great at creativity and a veritable font of information- both useful and useless. I'm still that way, but slower. And it p!$$es me off too. I wanna yell- I'm smarter than that, really!


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## Our Little Farm

Yet I can walk into a house, and days later sketch out the layout, where every piece of furniture is and if I went back and you moved something I could tell you what it was. Even if it's only inches.

Weird huh?


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## Sherry in Iowa

Our Little Farm said:


> I hate it when I want to say an everyday name for something. Like mail box, or a book and I am looking at it and cannot remember what it is called.
> 
> I mean, seriously? How do you explain that to folk.
> 
> Like instead of saying, please pass me a pen, you say please pass me that .....um thing that writes, can't remember what it is called.
> 
> Is this part of my fibro?


I'm sorry to say this...but you have made me feel better! That's exactly what I have been going through the last few weeks. I think it's just the fibro, but whatever it is..it's darned frustrating!

To make this funnier..I write to make a few bucks...that means using my brain and putting thoughts to pencil and pen. ound:ound: It's been ridiculous the last month. Not only can I not separate my thoughts and concentrate on one topic...I forget a word or name mid sentence and just sit here and laugh at myself..:hysterical:..cause what else am I going to do?:sob:


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## DamnearaFarm

Our Little Farm said:


> Yet I can walk into a house, and days later sketch out the layout, where every piece of furniture is and if I went back and you moved something I could tell you what it was. Even if it's only inches.
> 
> Weird huh?


Shoot.... one way I try to quieten my brain down to sleep is to 'walk' through the houses we've lived in as a family, room by room, house by house.


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## Our Little Farm

Someone who knows that I can remember every room of every house I have ever been in, says my brain is full up. 

I honestly wonder if it is sometimes. LOL


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## Caitedid

What gets me going is that every time I see the doc I have to register, which means confirming address, phone #, SS #, etc. Thinking about asking the doc if I can have some sort of waiver, or just typing the info on a little card. What kind of grown adult doesn't know their phone or address?


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## DamnearaFarm

I have a thought for y'all to ponder.....

I don't stress or worry. I just don't. Never have. My way of dealing is to find something to do that will affect the situation and then just do it. (I.e.- my dad died when I was 18. Instead of crying and slinging snot, I contacted all the utilities and creditors my parents owed and made arrangements for the bills and such to come to/be paid by me so Mom wasn't bothered for a while.)

Stress/worry are some BIG triggers for flares. 

When I was pregnant with child number two, almost 14 years ago, I had a very aggressive district manager. Despite have 11 children of her own (yep. Gave birth to them all) and having been an L&D nurse, she was ROUGH on my extremely pregnant self. Evidently my body picked up on the issue and my brain lay blissfully dormant (lol) because I began to have panic attacks. They were weird...I had all the physical symptoms but no psychological ones. My body would just take off and do it's thing while I was doing mundane tasks.

This brings me to the point.....

Yesterday morning, my DH called with the news that he was offered the title of Field Manager (the company's version of district manager) and that it would necessitate a move and come with not only a company car and fuel funds, but a massive, massive raise too. The move could be as close as our own state or as far as a few states away. 

While my mind was whirling with the news, I didn't feel dread or worry or anything. By five that evening, I was in a HUGE flare. Tears in my eyes, face flushed, teeth gritted against the pain flare. It finally subsided around midnight and I went to sleep. It's gone today and all I have is the muscle 'hangover'. 

I wonder....is it truely possible for your subconscious to pick up something like that and run with it while consciously you feel ok? Did my body do a replay of the panic attacks and just freak out and flare at the news?

What do y'all think?


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## beccachow

Oh, Triple R, no matter how deeply you squash worry and panic, it will seep out in some physiological way, and that goes for EVERYONE. Some folks, high blood pressure or chronic headaches, others, like us, in full blown fibro flares. So sorry you flared so badly, and hoping you feel better now.

Oddness...had a good day yesterday than *snap* my brain went out on me. Just left for vacation and forgot to take me. I am telling Kara she needs to change into those...those...things you sleep in...Jay told me to go to bed. So I did, but not before snapping at the one dog who chose not to go out int he rain and I caught redhanded pooping in a secluded area and the puppy who jumped on me one too many times. My exact words were GOING to be, "Pack your toys and get out" only of course, it ended up "Pack your...your...your STUFF...and...go away." And trying to isolate the dogs' names who were guilty...well, Duke didn't do ANYTHING and was accused of everything since I couldn't recall names.

This AM, my brain seems to have returned. Strange disease, this thing.


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## DamnearaFarm

That it is. Sometimes you wanna just look at the people around you and say:

"Really! I'm smarter than this! I promise!"


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## dlskidmore

I saw about an 80% improvement in my fibromyalgia when I switched to a low carb diet and moccasins in place of commercial shoes. Before I changed the shoes I just had too much hip pain to get the regular gentle exercise I need. It took about three months to strengthen my feet enough to not miss the support in commercial shoes. It wasn't easy, but my hip felt better instantly although my feet complained, so I stuck with it.

I still have flare-ups when I'm stressed, but getting rid of that chronic daily stress of ill-fitting shoes was night and day better. I take my flexril maybe one week out of 12 now, where I used to take them every day and only vary the dose. I feel so slow-witted when I have to take the meds, I try to avoid them.

Someone mentioned vitamin D. If you cut back on seed oils in the diet, stick with animal fats like butter and lard, you'll be able to stay out in the sun longer without burning, and manufacture your own vitamin D. I take vitamin D in the winter, but in summer I can easily overdose if I supplement. Last year I tanned for the first time ever. I always used to burn when I spent time in the sun.

I think everyone is different, but if you can find your biggest source of stress (allergies, nutrition, ergonomics, emotions, posture, chronic infection etc...) and eliminate that, the fibromyalgia symptoms are greatly lessened.

I won't hang out much on this thread, I hate wallowing. I'd rather pretend most days that I'm healthy and try to live that way.


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## beccachow

Nah, we just boost each other and keep going; to share this with others who have BTDT is fantastic. Stick around! Thank you for your input, I am finding without a doubt this is stress related, but moving to a hotel and changing my name isn't in the cards, lol! Thank you for reminding me again about the vitamin D. I recall one March feeling so angry that it was cold and rainy, I swore I would feel better if I could just have one warm, sunny day. Went to the doc and she routinely drew my blood and found that my D levels were tanked. My body was telling me that I needed vitamin D!

So aggravated...my prescription insurance refused to fill my Provigil without an authorization, rather than screw with them I went overseas for it. Then I go skipping in to the pharmacy with my Lyrica prescription and surprise, surprise, the company once again refused to fill it. Not only that, they suggested I try gabapentin. How dare a presciption company tell me what I should be taking??? I had to pay out of pocket for a few days worth until my doc sends the authorization. To make it worse, I had been taking free samples of Lyrica and built back up to max dose, so they were just going to cut me off? Lyrica, while not a narcotic per se, is not to be suddenly stopped and not at the doses I take!!! Are these people insane??? I so wish I could be there to read the doctor's response to their suggestions. He will cut them in half.


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## dlskidmore

The anti-depressants and anti-convulsants do help many, but the list of side effects is too scary for me. I like my brain the way it is. Trying to find drug-free treatments as much as possible.


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## Caitedid

I don't think we're here to wallow, I think we're here to talk to people who understand. I feel like that really helps me deal, since I don't have much of a support system IRL. 

Forgot my meds Saturday night and all day Sunday, was amazed at how rough yesterday was. On my meds yesterday and today is already 2,000x better!


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## MullersLaneFarm

dlskidmore said:


> Someone mentioned vitamin D. If you cut back on seed oils in the diet, stick with animal fats like butter and lard, you'll be able to stay out in the sun longer without burning, and manufacture your own vitamin D. I take vitamin D in the winter, but in summer I can easily overdose if I supplement.


This only worked for me in theory!! My seed oils are used only for my soapmaking. I render my own tallow & lard, and when we had a cow, churned our own butter. (I won't buy margarine to this day). I'm an avid gardener so I'm usually out in the sun when the sun is up. On top of this, I was taking daily vit D3.

Last fall, my vit D was well below normal and had to take 50,000 iu once a week. It has taken 6 months, but my vit D is now in the normal rage




dlskidmore said:


> I won't hang out much on this thread, I hate wallowing. I'd rather pretend most days that I'm healthy and try to live that way.


There isn't much wallowing here, just support. I don't post too often, but I do come and see what others are dealing with and lend an encouraging hand when I can.


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## dlskidmore

MullersLaneFarm said:


> I'm an avid gardener so I'm usually out in the sun when the sun is up. On top of this, I was taking daily vit D3.


Do you wear sunscreen or protective clothing that keeps you from getting enough UV light to be making your own vitamin D? 

I bring a floppy hat when I garden, but leave my arms and legs bare.

Are you getting enough cholesterol in your diet? Yes, that is a weird question, so here's the reasoning:

Vitamin D - Wikipedia, the free encyclopedia
"Vitamin D3 is made in the skin when 7-dehydrocholesterol reacts with ultraviolet light"
7-Dehydrocholesterol - Wikipedia, the free encyclopedia
"7-Dehydrocholesterol is a zoosterol"
Sterol - Wikipedia, the free encyclopedia
"Sterols, also known as steroid alcohols, are a subgroup of the steroids and an important class of organic molecules. They occur naturally in plants, animals, and fungi, with the most familiar type of animal sterol being cholesterol. Cholesterol is vital to cellular function, and a precursor to fat-soluble vitamins and steroid hormones."


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## countrysunshine

I wanted to say that I also don't consider this a place to wallow nor is it a "one up" type of group.

When I comment it is to assure someone else, "Nope, you are not crazy. That symptom is real." Or to say, "Hmmm...didn't know that was part of this. Thanks for sharing." Or, to give my experience with a med.

I don't consider that wallowing.

I am very glad for each person that finds something that works for them. I am also thankful for this board not being a "you aren't as bad as me because you work" sort of place.

Whether I express it or not, I am grateful to all of you that share your experiences and what works for you.

Now, for my funny.... I have a real problem opening pill bottles these days. I decided I wouldn't close them completely. That worked fine until I forgot I did that and dropped the bottle with 120 pills in it. That knocked over the others and I had pills from one end of my bedroom to the other. Here I am in the midst of a full blown, can't see, gonna puke any minute migraine on my hands and knees trying to pick them up. My husband finally just swept them all together for me to sort later.

You have to laugh about that stuff and you can't make it up. Only others that have been there will believe you!


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## Caitedid

CountrySunshine- I didn't hit the like button because I can't really like you dropping meds, but I can totally empathize. I get the easy open caps, but had three full bottles come open in my purse the other day. Ugh!

I also totally appreciate the lack of "You're not as sick as me" on this thread. I quit three other online groups and started this one because of that. Folks complaining about how they have to get their husbands to carry in the gallon jugs of milk since they're too sick to lift them. Guess those of us without husbands aren't sick unless we starve to death!


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## Elsbet

Oh, wow- a support group for fibro! <3 <3 <3 I need this!


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## Elsbet

I'm reading through this thread in tears. My chiro and massage therapists said Fibro/possible MS several years ago. I got a referral to a neurologist, who basically did nothing for me, no suggestions, nothing. Stopped going to him. Now I'm seeing a psychiatrist to help me deal with the severe emotional issues, and he (after my chiro/therapists) is the first person to take the fibro really seriously. He put me on Cymbalta, and it helps. Not completely, but it helps.

And just having it help is encouraging!

I get the bruises like some people mention- great big "when did that happen???" bruises. I have spots on my body- mostly across the front of my thighs and upper arms, where I have very little feeling in the skin and upper levels of the muscle. When I bump that, I get wicked bruises. I think I bump harder than I realize, because I don't get the pain response there that says "back up!" Then other places hurt crazy bad just to be gently touched. 

And the title of this thread... "But you don't look sick." Oh my goodness.
People say "If you just get up and exercise, you might feel better." Yes. I might. Or I might (and usually do) totally wear myself out before I can do a tithe of what someone else is able to do. I have degenerative disc disease, arthritis, celiac disease, and a few other things that aren't as much of an issue (tinnitis, reynauds, etc. Minor stuff.) So I work hard to eat right, get exercise, and do as much as I can as long as I can do it. And when I can't do anymore, I like to keep my hands busy with art or knitting or crocheting.
One of my worst issues is with tremoring, though. I'm going through it now. But I found today, I started to do some art, and I was tremoring pretty bad. I was almost ready to give up on it, but pushed through because I didn't want to give up, and this may sound crazy, but the tremoring stopped. And I got to wondering, does art/crafts stimulate that same part of the brain that dancing stimulates? Because they've found that people with Parkinsons will stop tremoring for a while when they are dancing, which is awesome. I wonder if engaging in more creative things would help all of us to feel better? And I know there are a LOT of creative people posting here.  I was just surprised today because usually when I can't grip a pencil right, I give up, but decided not to give up this time, and the tremoring stopped. (It's back now, but that's ok.)

I'm just encouraged by so many of the posts I've read here, now that I've found this thread. I'm encouraged that other people are pushing through, and learning when NOT to push through, and that it is ok to have bad days and not feel guilty about it. 
I hope you all have a bright and lovely and pain-free tomorrow!


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## Our Little Farm

(((hugs))) Elsbet.

Someone said this was a wallowing thread, I don't think so. This is a thread where friends can talk to each other, find out what works, and be supportive.


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## Sherry in Iowa

I haven't been on this thread long enough to know if it is a wallowing thread or not. If it is..I'll not read it much longer..cause I can't go along with that. Most of the fibromyalgia sites are too wrapped up in each pain or weirdness and every old and new medicine that comes along.

Fibromyalgia is full of symptoms that are here today and gone tomorrow. Repeater symptoms and those things that are always a part of every day. Every sufferer is different. They all have some things in common and some things that are not as common to all sufferers. 

Some people can tolerate their pain and force themselves to rise above it. They don't take meds and they don't want to see themselves as weak just because they have fibromyalgia.

Some people need the social support in their lives of a forum. They need the meds to function. They need to know that someone out here understands them and what they are going through.

Neither group of people is wrong. Neither way of treating fibro is wrong. They are just different. And, from my experience..I'd say first that I fall in the first category. And that sometimes people like myself get offended by the people that brush off our topical use of olive oil, or our eating butter, meat, eggs etc.

Some of us don't take meds..because we can NOT physically take them. Some of us would love to pop a pill that fixed the symptoms without adding to our misery by even more severe side affects from said meds.

Some of us do not trust the pharmacies and the meds that they throw out there for those poor fibromites. 

All in all..we all suffer..but we deal with it all differently.

There is surely room enough for both on any forum. And there will be a day that I will post and tell you just how doggone sick and tired of fibro I am. I've had it since I was a kid..finally diagnosed 12 years ago. And I have yet to say that my day is beyond belief..but I know .. there's room for that day to happen. I'm pushing 60 hard, if I made it this many years..I think I have the strength and most of all the faith to make it all the way.

I'm kinda shocked that I wrote this. But I think it behooves fibromyalgia sufferers to stick together. I encourage those that do NOT take meds to post about what is working for them. I will certainly read those posts and search for things that will make my life easier.

I also really encourage people to stay upbeat about their disease. Is fibro life changing? Certainly! But, it's not cancer. If you did something today and it made you feel good to accomplish it..even if you are sore from it..tell us! We need to be encouraged to keep up the good fight.

Blessings fellow fibro sufferers..have a great day!


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## Our Little Farm

Wonderful post Sherry.

I did not take meds for years, but had to go to gabapentin because of other nerve damage pain die to past injuries, and it helped with fibro problems!

However, I have gone down from what I used to take, and still seem ok. I am very careful about what I eat, and that seems to make a big difference.


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## nduetime

If this were a "wallowing" type of thread/group I would probably stop as well. If you listen to negativity long enough it makes everything worse. I prefer to dwell on what i can do, what does work for me, and some of the funnier/silly aspects of having fibro. Don't get me wrong I have "those" days too. Days when I talk about a certain thing that is bothering me or if i did something really stupid and am now paying a price. We all do that. Only fibro people seem to really understand when we do those things.

For the most part, I really enjoy sharing info with everyone here and being supportive of each other. I know I have learned a few new things as well. I hope we can keep this going and help each other out.


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## MullersLaneFarm

dlskidmore said:


> Do you wear sunscreen or protective clothing that keeps you from getting enough UV light to be making your own vitamin D?


No sunscreen here. Occasionally a hat, if it is real hot out, but its main job is to hold a cold, wet rag on top of my head.

My HDL levels are very high, so I'm pretty sure I'm getting enough good cholesterol in my diet.

We've raised all our own meat, vegetables, honey & eggs and about 50% of our fruits the past 10 years.


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## countrysunshine

This makes me think I need to look into cholesterol more. My total cholesterol runs borderline high. This would always freak out the people that came in to do our health screenings at work. They just went by the numbers on the insurance company chart in front of them.

My doctor, on the other hand, said he wasn't worried because my ratios were excellent. In other words, I had a lot of the "good" cholesterol. But as I have gotten older I know I eat fewer foods that raise my cholesterol. I wonder if I am doing myself an overall disservice. Food for thought. No pun intended.


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## DamnearaFarm

No wallerin' on this thread. We share what we're going through and what seems to be working and what doesn't. In example- i've gone off aspertame and am feeling better for it.

Unlike many fibro forums i've visited (and ran from!) we're a bit different.... even if the kids/house/job manage to be taken care of, we still have critters and/or a farm that needs us. Closing the bedroom door and taking a day off isn't an option- so we devise ways to get things done easier. 

Yeah, we whine when we're feeling bad but it's not a constant thing.


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## MullersLaneFarm

> Someone said this was a wallowing thread, I don't think so.


dlskidmore DIDN'T say "this was a wallowing thread". What he/she said was: 



dlskidmore said:


> I won't hang out much on this thread, I hate wallowing. I'd rather pretend most days that I'm healthy and try to live that way.


I took what she said as she won't visit this thread often because it might make her feel like feeling sorry for herself. I just hope she isn't scared off by our comments about her comment! I think she's relatively new to the board and may not 'know' us as well as we 'know' each other. 

I hope she sticks around so she can find out:


Our Little Farm said:


> This is a thread where friends can talk to each other, find out what works, and be supportive.


 :thumb:




Elsbet said:


> And the title of this thread... "But you don't look sick." Oh my goodness.
> People say "If you just get up and exercise, you might feel better." Yes. I might. Or I might (and usually do) totally wear myself out before I can do a tithe of what someone else is able to do.


If I had a nickel for every time I heard that phrase. :hair

I know the benefits of working out. Ten years ago, I was at the gym every single day working out. At 42, my body was more 'buff' as any twenty-something out there. I've also learned to listen to what my body is telling me. 
I also have a blown disc & degenerative joint disease. I'm pretty active ... when my body lets me. The days I'm not so active, I'll get on my stationary bike and ride. Other days ... forgetaboutit ... I make sure what ever I'm over doing will be worth the down time I know I'll experience some days it is worth it.

Elsbet, I find my fiber arts keep me sane. Treadling on my spinning wheel is low impact and very zen so I can work through some of the pain


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## nduetime

yes! Please do not get scared away from us dlskidmore! We really are a decent bunch of folks. I hope that you will feel motivated to shre some of the things that have worked for you. I for one am willing to try just about anything. What works for me I keep and what does not I toss aside. We all have different things that work and I enjoy finding something new that helps even a little bit. Anyway, long story short...(Yeah right) welcome to you. I am glad that you dropped in!


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## Our Little Farm

Sorry I read it wrong dlskidmore.
Mullerslanefarm. I wasn't the only one that mentioned that we were not here to wallow. Hope you enjoyed that chastisement. I'll just stay gone for now. Enjoy this site.


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## nduetime

OLF, you were not the only who said that we were not here to wallow. i did as well. I took it as she was saying we were wallowing at first too. please do not go away. We all need all the support we can get. i hope you will stay. i like the things you say and find your posts great. I do not think Cyndi was meaning to chastise any one person, I thought she was just trying to point out that we could take what dlskidmore said another way. hang in there and please stay with us!


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## MullersLaneFarm

Our Little Farm said:


> Sorry I read it wrong dlskidmore.
> Mullerslanefarm. I wasn't the only one that mentioned that we were not here to wallow. Hope you enjoyed that chastisement. I'll just stay gone for now. Enjoy this site.


OLF, whoa ... back the train up. Yes, I know you weren't the only one that mentioned this ... a whole lot of folks did, with _me _being the one that first responded to the 'wallowing' issue. 

My post was NOT a chastisement towards you, personally ... your post was just the handiest and most concise to quote, ESPECIALLY since your post also showed what this thread is all about


Our Little Farm said:


> This is a thread where friends can talk to each other, find out what works, and be supportive.


 which I also quoted in that post

I'm very sorry if you took it personally, it definitely wasn't meant that way.


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## DamnearaFarm

Anyone else have to....adjust when they get in bed at night? When I first get into bed, my back spasms like nobody's business and it takes a few minutes for it to relax and the pain to lessen. I've tried changing positions (I try to sleep only on my side because back sleeping means help getting up  ) and/or stretching but it's not helping so now I just lie there until the spasms are done. 

Good news- with DH's promotion, we should be able to afford insurance so I may be able to get that MRI after all. Gosh, it's been so long since i've HAD insurance I won't know how to act, lol!


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## Caitedid

Rose- I've started doing an extra set of my PT stretches while I'm trying to fall asleep. I've been having a lot of trouble with my hips, so this kills two birds with one stone. Thinking about the stretches is relaxing and keeps me from thinking about how I'm not already asleep. Plus it seems like the stretching helps keep the spasms at bay during the night.


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## Caitedid

Looking for opinions/thoughts/WWYD on this. GP wants me to go to Mayo to see a Neuropsychologist. She's concerned that the forgetting/tripping/falling are a sign of something more serious than fibro. My mother has MS, and while my MRI taken last fall was clear, it is common for other symptoms to show up before there is visible damage.

My fiance's b-i-l is dying of brain cancer at 38, so Jim is pretty adamant about me going to this appt. Rochester is only an hour from where we live, so the travel isn't a problem. However, I don't have any insurance and I'm already $6,000 in the hole from the fibro diagnosis and the ER bill from when I fell and ended up with stitches. If I go and there's nothing else wrong, the appt and testing will add another huge debt. If I go and they do find something, I don't have any insurance to cover it. OTOH, the chances of me getting decent insurance with my pre-existing conditions is pretty slim.


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## beccachow

Oh, here goes becky again...

Catiedid, have you been checked for Lyme? If not, get a simple blood test and have it sent out to BOTH labs, for the Elyssa and the Western Blot. One is notorious for false negatives. All your symptoms ALSO can point to Lyme, ask me how I know. 

I had a crazy good day on Sunday. Came home from night shift, slept for about 2 hours, got DD up and got us together to go to Sunday School (I volunteer to teach once every few weeks and my number was up), then back home to get back in the car and drive nearly 3 hours to Reading PA with a friend where we saw the Christian group, The Newsboys, then 3 hours back again to fnid DD still awake. Played with her for about an hour, then went to bed. For getting only 2 hours of sleep the night before, what a fantastically fun day!

Monday was spent doing as little as possible, though, as the exhaustion caught up to me and some nagging aches and pains allowed me full Lazy Day status, lol. But what a great day, and well worth a day off on Monday!!!


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## DamnearaFarm

Caitedid- any chance there is anyone sort of between a gp and Neuropsychologist that could test you? Could be cheaper...

Honestly, my thoughts on my (and other folks that are uninsured and have a chronic disease) medical bills. I just assume from the the get-go that I'm never gonna have them paid off. I'm still going to need to see the doc, regardless. So I make the payment arrangements and off I go. If I actually *do* end up paying off a bill before I create another new one, yay me. If not.... well, I budgeted for it.....


On the topic of stretches..... anyone do yoga? Thoughts? My doc recommended it. Anyone have recommendations on videos and such for a beginner?


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## nduetime

RRR- I do yoga on my Wii. It has stretches and positions for beginners to advanced. I do think the stretching helps a lot.

I have been using a generic "Aleve" for the past week and it does help me. Especially in the mornings when I find it difficult to get up and get going. i do a lot of stretching and find I am more flexible when I take one.


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## DamnearaFarm

Wii yoga, huh? I will have to look into that. 

I know what you mean about getting moving in the mornings....I have to lean on or hold the wall or railing when I start downstairs but once i'm down and have the coffee started it's like my muscles are finally waking up and getting going with the rest of me 



Other than trimming the final two horses (the one that could possibly cause problems is going first, that way the one that naps while it's going on will be a easy one to finish up with, lol!) I plan on getting in some footstool-based garden weeding today


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## beccachow

Insurance update: it seems that because I stopped taking the lyrica, they want me to try gabapentin and will only pay for that. If it doesn't work, then I can switch. Ok, I'll give it a genuine try. We are going to Disney next week though, and it will be a LOT of walking so I plan to pay for a week's worth of the lyrica before we go, not the time to be changing ships mid-stream.

Pain issue: my right knee is KILLING me! SO crazy, when I straighten it or bend it, it is very painful (like I yell ouch kind of painful), steps are bad for it. More like an injury than the usual transient aches and pains, only I don't think I injured it. On the bright side, the pain of the knee hides the rest of it, though! 

Disney...Disney!! Leaving on the 9th, staying in a Pirate Themed hotel, dinner with the princesses, my 6yo is going to LOVE it!


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## barnyardgal

Has anyone been diagnosed with polymyalgia or polymyositis?? Reason i ask is caused i was diagnosed with fibro many years ago,then dr. i have now sent me to have blood test done & it showed i have both those disorders...dr. also said sometimes other drs. will say it is fibro when they don't really know what is causing your problems/pain...

There is really not much difference in either three of those diseases & think all treated about the same...i am on muscle relaxers & pain pills daily...was taking Lyrica with good results after about 3 days on it then after 3 months on it,it started effecting my eye site & had other issues with it so quit taking it..

Each day living is a struggle to deal with!!!! some days better than others!!!


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## Sherry in Iowa

barnyardgal said:


> Has anyone been diagnosed with polymyalgia or polymyositis?? Reason i ask is caused i was diagnosed with fibro many years ago,then dr. i have now sent me to have blood test done & it showed i have both those disorders...dr. also said sometimes other drs. will say it is fibro when they don't really know what is causing your problems/pain...
> 
> There is really not much difference in either three of those diseases & think all treated about the same...i am on muscle relaxers & pain pills daily...was taking Lyrica with good results after about 3 days on it then after 3 months on it,it started effecting my eye site & had other issues with it so quit taking it..
> 
> Each day living is a struggle to deal with!!!! some days better than others!!!



When my chiro first diagnosed me..he told me I had that..he said it was like an arthritis in the muscles..said it is what they now call fibro.

My fibro actually affects my eyes..that bugs the living heck out of me and keeps me from driving much.

Wishing you a good day!


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## beccachow

Quick update: Yay, pit-bull type doctor who fought the insurance company on my behalf and WON! I went to the pharmacy to buy a handful of Lyrica and was told the situation was resolved and I got my prescription for the med, covered by the insurance!

Bring it on, Disney. Have meds, will travel!


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## Caitedid

Congrats Becca!

Haven't been online much, bf asked me to move in (great blessing), so have been very busy with that. I would say my biggest fibro tip is to reduce stress. I quit a much hated job, arranged the moving so I could have more time to do it, and am feeling much better. I found a new job 4 days later, better hourly for fewer hours, doing something I enjoy a lot more. I am living back out in what we refer to as East Deliverance territory, getting hens tomorrow and goats next week, working 4 hours a day instead of 9-10, dog's happy, bf's happy, I'm happy!


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## Sherry in Iowa

Caitedid, I am THRILLED for you!


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## beccachow

Yay, Catiedid!


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## Caitedid

Haven't been on here much, hope you are all doing well. I worked myself in to a pretty big flare this weekend, trying to get caught up and ahead on farm work. I think one of my biggest challenges is breaking myself of trying to "keep up" with the guys. Anyone else have this problem?


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## Sherry in Iowa

Caitedid said:


> Haven't been on here much, hope you are all doing well. I worked myself in to a pretty big flare this weekend, trying to get caught up and ahead on farm work. I think one of my biggest challenges is breaking myself of trying to "keep up" with the guys. Anyone else have this problem?


Yep..I learned the hard way that fibromyalgia has a mind of it's own and it is on it's timetable and not mine or the homestead's. I farmed, broke horses, drove semi over the road and raised thousands of hogs for people..no more. 

I went into a heck of a weird flare with my eyes. The muscles in my face, head and around my eyes was horrible. Gave me auras .. which I hate..lol. 

You have to really be careful that you don't tax your adrenals too much when you are farming. Late..long hours can put you into a flare. be wise with your energy and pamper yourself whenever you can.

Hope you feel better soon!


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## Caitedid

Sherry- The bf commented the other day that "You don't let the fibromyalgia slow you down". Wondering if that isn't the problem, as my natural inclination is to just keep pushing. How have all of you dealt with this?


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## Sherry in Iowa

Caitedid said:


> Sherry- The bf commented the other day that "You don't let the fibromyalgia slow you down". Wondering if that isn't the problem, as my natural inclination is to just keep pushing. How have all of you dealt with this?


Hi girl!

Well I am torn on that. Like with farming or the kinds of heavy physical labor jobs I and others have had kinda works strange. You're gonna get a weird perspective..:huh: just warning you!

I worked hard physical labor all my teen and young adult life up until I was 40. I've had some fibro symptoms since I was a kid. I'm sure that for the first 20 years or so..the physical exercise was probably good. But on the same hand, I didn't eat very well..just junk..just enough to get by. I barely slept for 30 years..lol.

I also noticed that as the years went on..I self medicated..without realizing it.. with whiskey. When I quit drinking, cold turkey and my idea..my pain went to a disabling degree. At the same time fatigue hit me and laid me cold. I barely made it off of the couch for two years. I used a cane at that time too.

I praise God that I am up and going now. I garden..a big garden. So far today I have been there 2 times and I'm getting ready to go a third time. Could I have stayed out there? Yes. But if I did..I wouldn't be in great shape by tonight. If I continue to take hour bouts out there..my muscles have a chance to recoop and not strain or over work. I choose to make several trips and come back another day versus do it all today and be in a flare for 2 weeks. See what I mean?

I think we should push ourselves to DO something. I don't care if all ya can do is walk to the bathroom and back ( BEEN THERE AND UNDERSTAND)..do it twice in a row for good measure. We are all at varying stages of age (I'm gonna be 60 in Feb.) and health, weight, etc. The thing is..we are very prone to try and make up for things we didn't get done or try to show our family and ourselves that we are "cured" when we are not. That leads to trying to do too much and that leads to a flare and that my friend leads us to wondering where our lives are going.

I believe some of us .. if we keep at it .. can live with fibro comfortably enough. Some of us might even heal to the point of remission of sorts. But others will not and will continue to tailspin.

I believe that patience is indeed the virtue..not just for us, but for our families and spouses. I had just got married and then went down for two years. I am blessed that I married a man who treated me no less well when I was so sick than when I am at the stage I am now. He had patience and he let me wade my way through the fibro and supported me. 

You CAN push through..but are you using drugs to do it? What will the culmative affect of those be over the years? If you are young and start drug therapy..what do you do when you reach my age? 

LIVING with fibromyalgia is the key. Not ignoring it. Not wishing it away. Not pretending that you don't have it. Learning to live with it..that has been my key. When it affects my eyes..I cannot push through it..I can't see well enough to do anything. But I CAN start using reflexology, relaxation techniques and trying to eat the things that help the muscles instead of tightening them up. 

That was one tough question..like I said..I'm torn and sitting on the proverbial fence..lol. I believe I pushed it too hard for too long. Now I am having to push to do what I wouldn't have blinked at earlier. I try really hard to listen to my body and that little voice we all hear..but many times ignore.

If you have a bf that understands your fibro..that's a blessing you will treasure forever. Just don't lie to him or yourself..it is what it is. Someday it may change for the better..until then..it is your life and it can be a GREAT one!!

Blessings and have a great day~


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## mountainwmn

I think the whole point is that with fibro you have to keep pushing. But you also need to know your limitations and not overdo it. Up to a point the more you do the better you will feel, but once you cross that line you are in trouble. 
At least thats what they say...I'm not totally sure it's true. When I first got hit with this I was 26, I worked at a 24 stall horse farm, rode, trained and showed my own horse, rode my bike up to 10 miles a day and would hike as far as 7 miles with no trouble. (not usually all in the same day, but sometimes I did) I always had energy, I got sore, but I knew it was muscle soreness and it was fine. A month later I still pushed myself, but if all I could do was walk a half a block and then go home, that was what I did. I couldn't work, I didn't ride my bike, and I sold my horse because I couldn't even brush him anymore. 
I didn't find that pushing myself helped me feel better at that time, but I would never know I felt better if I didn't keep pushing myself to do as much as I could.


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## MullersLaneFarm

You're correct mountainwmn, you have to recognize your own limits each and every day.

Right now I'm celebrating the nice weather we're having ... not too cold, not too hot. For me, it is perfect! Low 80's, low humidity, nice breeze. I've been pushing myself in the gardens ... planting and weeding and watering. I've been able to go a few hours at a time, then I rest for a while, then I go again.

It is like when I was a child and suffering from asthma ... I didn't like the medication and the oxygen tank in the closet. I learned to listen to my body. When it said "Go!", I went. When it said "Slow down!", I stopped.

It's the same with my Fibro. I listen to my body and I Go and I Stop when my body tells me.

Sometimes when my body says, "Slow down", I sometimes only 'slow down' and not stop ... but when it says, "STOP" ... it's sometimes hard even getting back to the house if I'm in one of the gardens or out in the pasture.


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## ChristieAcres

This thread has sure been an eye opener to me! It amazes me how different we all are, but also saddens me for all of you, with what you are going through. I am also very proud of all of you, pushing to do what you can, seeking answers, reaching out for help despite the years of frustration, and continually willing to get right back up and strive to move onward. No, not any of us have an easy road, but I will never see my own road the same again. 

This past week, I put myself through the ringer (lack of sleep and working too hard). Since DH has no time to help me with gardening, I have been doing it all, with my DS's help a few times this past few weeks (he lives with his roommate, not here at home). Right now, working on getting our 2,500 sq ft area of raised beds back in shape. I also have a 500 sq ft in-ground garden area to attend to. My indoor germination area is packed with seedlings, etc..., add to that a very full greenhouse (when beds are ready...). I am thankful for not reaching my limit, which stays high as long as I am physically active. Fortunately, I haven't found that issue true for me (the more I physically work, the better I feel, and I can still hike for miles). It isn't always easy, but cannot imagine it just not being possible. I have a harder time in the Winter if I don't work hard to stay physically fit. If I slack off, I feel terrible.


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## Caitedid

So glad to see I'm not the only one in this position. I still do more than a lot of people I know, but at 31 it's been hard to admit that I can't always do ALL of it. Even things as simple as having to say that I needed a nap mid-day on our girls' weekend was hard. I don't WANT to be sick, I don't WANT to get older, but the alternative is worse. Most of my problem is living MY life with MY illness, and not trying to be anything different. 

I have been able to decrease or stop several medications since I moved on to the farm with my bf and was able to quit my town job. I now relief milk 8 shifts a week at a 100 head dairy near the house. Having this flexibility means that I can take a nap in the middle of the day if I have to, which is usually my worst time of day. The job does involve movement, but not a ton of lifting, so it's not terribly strenuous.

Caite


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## PaulNKS

I'm glad I found this thread. Over the years I have tried forums dedicated to fibro.. but as y'all say, they just seem like "poor pitiful me" type of forums. I won't do that.

I had my first symptoms when I was 8 years old (1969). I'm 51. Of course, back then, there was no "fibromyalgia." I went to all types of doctors.The pain was in one of my hips. I can't remember now which one. They did neurological tests, several series of x-rays. Finally, the last specialist knew something was wrong, but couldn't find it. He ordered that 8 year old boy to bed and I was confined to it for several weeks. Then I spent the next 3 months on crutches. The pain finally subsided, but ever since then, I can't remember a day without pain somewhere. 

Finally, in 2001, I was diagnosed with Fibro. My doctor was very emphatic about me being able to control the pain. At the time, I thought maybe he didn't really believe in fibro. He told me that I can control the pain and maybe even eliminate along with the fatigue. I doubted him. I did what he suggested, and things did improve. At the time I went to him, the pain on my left side (arm, hip, leg) was so bad, I couldn't use my left leg or my left arm. Within a year, I was almost pain free. It was never gone, but it was manageable and at times, just a strong ache... of course, at times it was pain. lol

He gave me 5 instructions... exercise, eliminate the stress, keep a very rigid schedule, and don't vary any routine. I can't remember the 5th one now. The main thing was the routine. I had to make sure that my bedtime never varied and that I was to get out of bed EVERY day at the same time. My meal times were to never vary. 

He told me to start with 5 pounds on exercising.... as well as walking and working up in cardio. Today, I am once again able to use my BowFlex, and my weight bench and exercise. I have a bicycle I use for cardio and leg stamina.

The doctor also put me on ...gees.... can't think of the name of it... an old med starts with an "A". lol ANyway, I finally took myself off of it about 3 years ago. Now for sleep, I just use melatonin at night.

But.... even with all this and with the fact that my pain is minimal these days, it doesn't mean that the nervous system is back to normal. I found this out with my dentist. 

About 6 and 7 years ago, I went to a dentist a few times that was incompetent and really messed things up. Since I stopped working away from home to eliminate stress, I lost my insurance and no one will insure me now. So, I go to the University of Missouri Kansas City School of Dentistry for my dental work. I like it. It's cheap and I've never had as thorough or as good dental care from a private practitioner. 

My dental student told me that last week, they had a special segment in one of his classes that dealt with the fibro dental patient. 

I had oral surgery Friday on one entire half of the lower jaw. They had to remove some bone and then build up some areas with bone grafts.. yes... all due to the incompetent dentist from the past. lol 

While in there they found a tooth that had a cracked root meaning it had to come out. Even though it had a root canal previously, they never could get it numbed enough for me to be painless. Also, when the surgeon started stitching me back up, I was still white-knuckling it because the anesthesia had worn off a third time in 2 hours. But, I told him I'd deal with feeling the needle through the gums as he did the several stitches.

To make a long story not so long (LOL), the surgeon told me that since fibro patients generally have more active nerve systems, it's harder to get good results with anesthesia in that region. Not only that, but he said that when we get under stress of any kind, a fibromite's nerve system goes into "uber-hyper-drive". (his words). Because of that, it causes us to metabolize or absorb the anesthesia quicker than anyone else. By the time he finished that surgery, I'd had 14 shots of anesthesia and it was still wearing off as he stitched me up. The surgeon remarked that he had never seen a patient that went through as much anesthesia in such a short time as I did. His word was "remarkable." lol

Just thought I'd relay that. 

As far as the hard labor type chores? Since my partner is in bad health and can not help with labor at all, I've learned to use leverage to my benefit. I can still heft a 50 pound bag of feed on each shoulder at the same time and carry to the goat barn about 100 ft away with no problem. But, I also know that if I do that several times, I'll be sore at the end of the day just from that one chore. So, I get the wheelbarrow and put them in it to wheel it to the goat barn.

There's a lot of little tricks I've learned to do. It isn't because I can't do the same things anymore, but because I know that if I do, I will be in a lot of pain by the net morning. So, I improvise not from a lack of inability but from the probable consequences.

The only other thing. I would like to hear from more guys. From what I understand, the fibro can manifest differently with us than with you ladies. Not only that, I'm curious how guys handle it differently than women. 

Sorry for the long ramble. .... I'm glad to see this thread.

Paul


----------



## SageLady

Anyone here taking Neurotin/Gabapentin for fibro pain have sudden teeth sensitivity and pain? I have been on this drug since Feb. and suddenly my very healthy teeth are very painful and sensitive to hot and cold. Have read that others on this drug have been affected in the same way. Anyone here have this reaction?


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## PaulNKS

I haven't been on either of those drugs, but fibro itself can also cause sensitive teeth.....


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## beccachow

Laugh with me as the amazing beccachow bumbles in the kitchen, dropping everything she touches...you just HAVE to laugh sometimes!!

I have super sensitive teeth any way, always have.


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## countrysunshine

Count me in for sensitive teeth. I hate to brush them and having them cleaned makes them hurt for 3 weeks after.


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## nduetime

Tonight was the first time back in the swimming pool for this year. A little bit cold but not too bad. It was actually worse when I got out, lol! It was so nice to be able to swim around and feel like I could move my body easily for a change. I really look forward to making good use of the pool this year. We bought it in August of last year and I used it as long as I could. The Doc says this one of the best exercises for fibro patients and I have to agree so far. The only thing that would make it better is a heater.....$$$$$$$$


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## ChristieAcres

PaulNKS said:


> I'm glad I found this thread. Over the years I have tried forums dedicated to fibro.. but as y'all say, they just seem like "poor pitiful me" type of forums. I won't do that.
> 
> I had my first symptoms when I was 8 years old (1969). I'm 51. Of course, back then, there was no "fibromyalgia." I went to all types of doctors.The pain was in one of my hips. I can't remember now which one. They did neurological tests, several series of x-rays. Finally, the last specialist knew something was wrong, but couldn't find it. He ordered that 8 year old boy to bed and I was confined to it for several weeks. Then I spent the next 3 months on crutches. The pain finally subsided, but ever since then, I can't remember a day without pain somewhere.
> 
> Finally, in 2001, I was diagnosed with Fibro. My doctor was very emphatic about me being able to control the pain. At the time, I thought maybe he didn't really believe in fibro. He told me that I can control the pain and maybe even eliminate along with the fatigue. I doubted him. I did what he suggested, and things did improve. At the time I went to him, the pain on my left side (arm, hip, leg) was so bad, I couldn't use my left leg or my left arm. Within a year, I was almost pain free. It was never gone, but it was manageable and at times, just a strong ache... of course, at times it was pain. lol
> 
> *He gave me 5 instructions... exercise, eliminate the stress, keep a very rigid schedule, and don't vary any routine. I can't remember the 5th one now. The main thing was the routine. I had to make sure that my bedtime never varied and that I was to get out of bed EVERY day at the same time. My meal times were to never vary. *
> 
> He told me to start with 5 pounds on exercising.... as well as walking and working up in cardio. Today, I am once again able to use my BowFlex, and my weight bench and exercise. I have a bicycle I use for cardio and leg stamina.
> 
> The doctor also put me on ...gees.... can't think of the name of it... an old med starts with an "A". lol ANyway, I finally took myself off of it about 3 years ago. Now for sleep, I just use melatonin at night.
> 
> But.... even with all this and with the fact that my pain is minimal these days, it doesn't mean that the nervous system is back to normal. I found this out with my dentist.
> 
> About 6 and 7 years ago, I went to a dentist a few times that was incompetent and really messed things up. Since I stopped working away from home to eliminate stress, I lost my insurance and no one will insure me now. So, I go to the University of Missouri Kansas City School of Dentistry for my dental work. I like it. It's cheap and I've never had as thorough or as good dental care from a private practitioner.
> 
> My dental student told me that last week, they had a special segment in one of his classes that dealt with the fibro dental patient.
> 
> I had oral surgery Friday on one entire half of the lower jaw. They had to remove some bone and then build up some areas with bone grafts.. yes... all due to the incompetent dentist from the past. lol
> 
> While in there they found a tooth that had a cracked root meaning it had to come out. Even though it had a root canal previously, they never could get it numbed enough for me to be painless. Also, when the surgeon started stitching me back up, I was still white-knuckling it because the anesthesia had worn off a third time in 2 hours. But, I told him I'd deal with feeling the needle through the gums as he did the several stitches.
> 
> To make a long story not so long (LOL), the surgeon told me that since fibro patients generally have more active nerve systems, it's harder to get good results with anesthesia in that region. Not only that, but he said that when we get under stress of any kind, a fibromite's nerve system goes into "uber-hyper-drive". (his words). Because of that, it causes us to metabolize or absorb the anesthesia quicker than anyone else. By the time he finished that surgery, I'd had 14 shots of anesthesia and it was still wearing off as he stitched me up. The surgeon remarked that he had never seen a patient that went through as much anesthesia in such a short time as I did. His word was "remarkable." lol
> 
> Just thought I'd relay that.
> 
> As far as the hard labor type chores? Since my partner is in bad health and can not help with labor at all, I've learned to use leverage to my benefit. I can still heft a 50 pound bag of feed on each shoulder at the same time and carry to the goat barn about 100 ft away with no problem. But, I also know that if I do that several times, I'll be sore at the end of the day just from that one chore. *So, I get the wheelbarrow and put them in it to wheel it to the goat barn.*
> *There's a lot of little tricks I've learned to do. It isn't because I can't do the same things anymore, but because I know that if I do, I will be in a lot of pain by the net morning. So, I improvise not from a lack of inability but from the probable consequences.*
> 
> The only other thing. I would like to hear from more guys. From what I understand, the fibro can manifest differently with us than with you ladies. Not only that, I'm curious how guys handle it differently than women.
> 
> Sorry for the long ramble. .... I'm glad to see this thread.
> 
> Paul


Hi Paul, glad you posted! Yes, it would be good for other guys with FMS to also post, and it was nice to be able to read your history and how you deal/cope/adjust/compensate for yours.

As far as how FMS effects men, wonder if it has something to with also Testerone, as I have found my own case of FMS to be different from most women's (my Testerone level is high while my Estrogen level is low). When you described the lifting, that is the same way with me. I can still lift more than I should, so in order not to overdue it, I work "smarter," which certainly prevents overtaxing myself. When working in the garden, I have discovered some shortcuts to work that would otherwise be a bit much. I have a long handled 4 tined cultivating type tool that is amazing at weeding. So, I can now stand, weed an entire 100 sq foot bed, and do it in 30 minutes or less. After I am finished, I can either pick up all the weeds, shake them off, or come back to that chore the next day. I use a smaller shovel, which is better for my wrists, also use wrist guards (small wrists). Since it is easier for me to pull a garden wagon, I use that for everything I can (including firewood). When I am walking up the back deck stairs, instead of carrying the amount of wood I can muscle, I bring about 50%, then make more trips (stairs = cardio = keeps me more fit, too). These days, I assess each task, then determine an easier less taxing way to complete it!

Fitness is so key for those who can, without other limiting conditions/factors. I do T-Tapp, Elliptical, and hike as often as I can. That past two weeks, I have been off my routine, but still stayed active. I was recuperating from a fall, which is fortunately a rare thing for me to do. When you read below, you will know why, I simply didn't go in for stitches for a small gash in my forehead. I washed/disinfected it, then butterflied it. It is healing very well!

I am also drug-free, been that way for 12 years. Interesting to read the (5) things your wise Dr told you to do, but wonder if the 5th had to do with diet, as that has been a critical element of my own self-treatment. Pure clean water is important, too. Taking Melatonin at night is effective for me, too, but currently sleep without it. My schedule has been set since I was a child, naturally fall asleep at midnight or 1am. That dictates when I awake, usually 8 hours later.

nduetime, I flat LOVE to swim, but cannot in cold water :sad: I avoid chlorine and all chemicals in water, so have given up swimming (except for rare summer time swims in local fresh or saltwater bodies of water). Even then, can't be too cold or I can't swim in it.

Warmth? In 2001, I bought a PT Cruiser with heated seats. I still have my PT, and the seats still work great. Yes, use the heated seats whenever I feel "cold," no matter the temperature outside. For heat, we use firewood and that has been INCREDIBLE! I feel SO MUCH better in a warm dry atmosphere. In the Winter months, we keep our home around 80F, for me, and my DH just wears less clothing, tolerates it to keep me happy/healthy. Tonight it is in the 40s, so we have a fire going in our wood stove. 

I never knew others with FMS had sensitive teeth or issues with anesthesia! I have both, too. In fact, while undergoing surgery, the anesthesia failed, and I was wide awake (I do not undergo sedation). I felt the incision quite too well, but will stop there, except to say I thankfully was able to keep from moving. When I went to the UW Dental Clinic, I underwent a Root Canal, and after exceeding the shots for pain, I was given the choice to cancel. I refused. I didn't move a muscle while they did it, although involuntary tears tolled down my cheeks. They were all horrified, but I just wanted the Root Canal DONE.

Years ago, found out I was allergic to all Narcotic pain meds, so if it is something major :runforhills:


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## PaulNKS

I remembered what the 5th item was. It wasn't diet. It was sleep. He told me I needed to get a good 8 hours of sleep each night.

I'll list the 5 things again:

1. Routine. Set it. Keep it, no matter what. That includes bedtimes, waking times, meal times... everything.
2. Exercise... no matter how little, but as much as you can handle without causing side effects.
3. Eliminate Stress
4. Sleep. Most FMS patients don't go into the REM stage of sleep. Address it. Medicate if necessary to get to that stage and get 8 hours per night.
5.... doggone it... I'm still missing one. lol... danged fog.


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## countrysunshine

I am someone that is difficult to anesthetize. My dentist has on my chart to give a double dose and wait twice as long for it to take effect. I did NOT know until I was in my late 20s that people couldn't feel dental work.

Routine is a nice idea but not reality. I work a rotating shift and have a family. Their needs dictate my schedule and always have. But I know I have to have certain stretches of time for "recovery". Right now is really bad again because I can't seem to get "caught up" from doubling back off of night shift last week.

LoriChistie, I am always cold, too. I bought an Explorer with heated seats simply because it was what was available when we were hit and the previous one totaled. I love them. I ordered my Mustang with them. They can make me feel so much better.

I have a real problem cutting back on the amount I do/carry. I don't mind the exercise of repeated trips. I just am so used to taking as much as I can that it is hard to change. I also find myself trying to "keep up" with my husband and sons. Kind of hard to do now that they are grown men but my mind keeps saying they are my babies and I should do more than them.

It is nice to see that other people have some of the same issues and keep figuring out ways to get stuff done instead of the "woe is me" of some forums.

Someone I know was recently diagnosed and I told her I had been diagnosed years ago. She was amazed and couldn't believe all the stuff I do. I pointed out that my lifestyle combines "work" with the activity/exercise I need and that my hobby of sewing is low physical stress that keeps me up and busy on bad days. She was getting lots of advice to just "give in" on "bad" days. I don't think giving in every time is the answer so much as "adjusting your expectations." So, today and yesterday I couldn't work on the landscaping. Instead, I put binding on a quilt for a gift and started piecing another.

Okay, sorry for the rambling. Everyone keep up the good work. I am pleased/proud that so many of us find ways to deal instead of curling up in a ball.


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## mountainwmn

Hmmm..I have sensitive teeth too. The result is I take a valium just to get my teeth cleaned. Luckily though no problems with anesthesia. I always wake up from it feeling refreshed. I do have a problem with novacaine not working right but I'm not sure that has anything to do with the fibro.


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## Sherry in Iowa

mountainwmn said:


> Hmmm..I have sensitive teeth too. The result is I take a valium just to get my teeth cleaned. Luckily though no problems with anesthesia. I always wake up from it feeling refreshed. I do have a problem with novacaine not working right but I'm not sure that has anything to do with the fibro.


Novacaine doesn't work for me either..never has. My teeth are super sensitive like you guys. My fibro book shows that muscles/nerves in the jaw bone and neck can actually cause this pain. Message the jaw bones and face and neck and see if that gives any of you some relief.


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## Caitedid

I'm hoping that y'all can help me with some changes I need to make. I really need to be eating better and getting my life under control. I've been having terrible carbohydrate cravings and not sleeping. 

I just got engaged and we're talking about having kids in the next few years. From my research the biggest thing for FMS and pregnancy is eating well and getting off as many meds as possible.

Thanks!


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## PaulNKS

I don't know anything about Fibro with pregnancy. However, if you are having a lot of carbohydrate cravings, have you tried brown rice? It is carbs but not as fattening as breads, white rice, etc..... Just a thought.


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## ChristieAcres

Just go on the Paleo Gluten Free Diet, and modify it a bit. Skip the rice and go with a healthier choice, high in protein, actually a "seed," not a grain. *That is Quinoa!* Got cravings, drink Kefir Smoothies (I drink them daily). I use honey to sweeten, but am totally off all sugar and processed foods.


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## mountainwmn

I have consistently felt worse the better I eat. So I'm no help there. I tend to stick with something close to the Paleo diet just because that's what I like. But I didn't feel any better or worse when my tummy was acting up and all I could handle was potato chips and ramen noodle soup.


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## Caitedid

Mountainwmn- Interesting to hear that I'm not the only one who feels most like junk food when they're sick. The sicker I am the worse food I want.


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## DamnearaFarm

Just an update....

Still aspertame free and I really think it's made a difference. Still improving diet (never ate junk food and chips but I am a carb-freak evidently!) brown rice over white, ww bread over white, etc. 
A few flares (one pretty bad) but they seem to be when I overdo it. A few have been more neurological than muscular, though. 
Had to be at the ER for an unrelated issue and was talking with the doc regarding my body's reacton to what was going on to cause the visit. He was telling me that different people react in different ways... I explained that having fibro, I certainly understand that! What works for me might not for you and what works for me this week might not the next....what he said next kinda floored me with it's simplicity and truth. 
"Oh, you DO understand. You fibro people aren't wired right. Literally."
Wow.
It's true. Compare us to a house with wiring thats been cut into, pieced, added on to... through the years. Flicking the switch to turn the lights on may just make the dryer start. Turn the dryer switch to 'on' may start the blender to going.....

A pretty neat analogy, regardless. 

Hope everyone is enjoying this weather.


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## barnyardgal

I went to a meeting at a health food store a couple weeks ago & the lady giving the speech on vitamins etc..etc..at the end of the meeting gave me a bottle of "Magnesium Oil" to try for my pain & sleep...I can not believe the difference it makes in pain & sleep...!! I spray a spray on each arm in the middle & on my chest above my boobs & rub it on about 30 minutes before bed...it burns a little at first but when ya get the oil rubbed in it quits burning...the lady said those areas are tender thin skin & oil gets absorbed easier...
A week ago i gave some to my daughter to try for her foot pain & she is sold...she did some research on the oil & it also helped with her migraine headaches...she is thinking about ordering some online instead of buying it at the health food store,not sure how much it cost at the health food store as like i said it was given to me to try...

You all can google Magnesium Oil & read all about it but i am sold on it!!~~


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## beccachow

OK, two night works with zero sleep in between, then come home this AM and teach Sunday School, vacuum, change cat litter, rabbit cage, bird cage, cleaned up a bit, gathered mountains of trash, wrangled goats into the back yard and later back to the pen, all on zero sleep!

I admit, my knees are achy and I will be regretting this tomorrow, but for now, feels good to accomplish something.

Oh, and DH is asleep and has been for hours. Again. Oh well, it's what I do, right?

I am off on the 4 wheeler to pick up DD; gorgeous day for it!

Stay strong, my fibro friends.


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## defenestrate

Paul, was that med Amitryptaline? They gave it to my fiancee when she recentlygot diagnosed. Helped her a bit but the Lyrica is better (but bloody expensive!) She had peripheral neuropathy after a shingles infection and started having arm trouble more recently. Still working on stabilizing it and getting something for breakthrough pain as the lyrica often isn't enough to help much. Frustrating on our budget, but I help her all I can.


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## Caitedid

Do any of you get lightheaded from the fibro? Quit the meds a while ago, trying to sort out which ones I actually need to be on, now that my lifestyle has changed dramatically.


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## beccachow

Yup, dizzy for little bits of the time, also nauseous.

Finro update for beccachow: no pain, but LOTS of tingly "fell asleep: pins and needles" in my hands. I can function quite normally, but I keep shaking my hands to wake them up!

Hey, does anyone else crave carbs? I will crave bread to the point of withdrawl if I don't get some, and other high carb stuff at wierd times, like bedtime. I actually had a bowl of granola cereal last night in bed, hoping it would fill me up but it wasn't "carbs" so I was still feeling snacky.

My freelancing is taking off again, I seem to have found my writing brain cells again though I have to struggle for words at times. So far I have upped a level at my site and have frequent steady requesters again with all 100% ratings and great reviews.


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## beccachow

defenestrate said:


> Paul, was that med Amitryptaline? They gave it to my fiancee when she recentlygot diagnosed. Helped her a bit but the Lyrica is better (but bloody expensive!) She had peripheral neuropathy after a shingles infection and started having arm trouble more recently. Still working on stabilizing it and getting something for breakthrough pain as the lyrica often isn't enough to help much. Frustrating on our budget, but I help her all I can.


Have you tried some of the overseas sites? They offer good prices. My doc usually prescribed 5mg of vicodin as needed for the breakthrough pain, but he didn't this time. This flare up has been longer than the last,and seems tobe more cognitive and sleepy than pain.


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## Caitedid

Becca- Congrats on getting the freelancing back off the ground! 

For med costs: please check with the drug companies about whether you might be eligible to get your meds for free/low cost through them. I get $400 worth of asthma medication every month at no cost to me. Considering how much money the drug companies are making I feel totally fine about taking advantage of these programs.


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## beccachow

Hey, is everyone still here?? Helloooooooooo...oooo...oooo (echo)?


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## Caitedid

I'm still here. My hope is that everyone is feeling great and is hard at getting stuff done while the weather's nice.


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## nduetime

Hi there! been a long while for me. Had the accident in july and have just gotten around to healing up when i get hit with a flare. uhm....thank you very much. on the other hand, Dh says that at least it is something almost normal for me. he is right. This stuff i know. Hope everyone is doing well and feeling as good as they can. Life is good, be blessed.


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## dlskidmore

Found some articles that may be of help to someone:

This was written about something a healthy person can do to themselves, but doesn't it sound familiar?
Alan Couzens: The Protein Bonk

Short version: Under stress, the body starts canabalizing the muscles to increase the amount of amino acids in the blood stream. The body defends itself by reducing the flow of tryptophan to the brain, making you tired.

Even before I got to the line about CFS, I was wondering if this related in some way to Fibromyalgia, and went study hunting:

Plasma tryptophan and other amino acids in prima... [J Rheumatol. 1992] - PubMed - NCBI - Fibro patients show low amino acid serum levels, and decreased amino acid transport.
Evidence for an altered tryptophan metabolism ... [Neurobiol Dis. 2002] - PubMed - NCBI - Some Fibro patients have an altered tryptophan metabolism.
Primary fibromyalgia syndrome and 5-hydroxy-L-... [J Int Med Res. 1992] - PubMed - NCBI - Tryptophan supplementation helps fibro patients.

There were plenty more studies I didn't have time to read.

I've had a lot of improvement on the low carbohydrate diet, I thought the primary method of it working was reducing my hypoglycemia symptoms, and therefore lowering my background stress levels, but it may be that the extra protein is boosting my amino acid supply...

So if you've not tried it yet, you might experiment with eating more meat, or amino acid supplementation.


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## spacecase0

I clearly have Fibromyalgia or some similar thing, 
I have met others with identical issues, 
we shared info and are doing much better now, 

here is what I am doing, 

first is a sugar called D-ribose, I take 3/4 tsp before breakfast at about 8am 
and 3/4 tsp before second dinner or dinner at about 10pm. 
this sugar gives me access to the energy in my body, 
it lets me sleep at night without disruption, and that is the biggest help yet.
the one in the morning gives me energy all day.
it does not work so well without food and the timing right.

next is total elimination of GMO and conventionally farmed foods, 
conventionally farmed foods have lots of fluoride in them (pesticides), and that is very bad for someone with any health issue at all, 
and the GMO foods have DNA in them that combine with infections already there and make them worse.
see the studies linked at the end of this news story
New research - Morgellons proven to be a real disease

next is eating boron, found it in the vitamin section, will use borax if I can't get it, I take that at night before bed.
next is 1000mcg of B12 before bed (it acts like a sleeping pill, and I am sure other things as well)
next is about 160mg of aspirin morning and night. 
almost forgot, I use a clark zapper I built 
(here is how zappers2003 )
and I keep to regular waking and sleeping schedule, 
also I was gluten intolerant and had no idea for years, as was so sick and in pain all the time, I got most of it out of my diet, but cross contamination kept me from getting all the way better.

before I started these things I thought I was going to die in a few months, 
and now I am doing just fine, and as long as i don't exercise till I am wiped out.

I hope that some of the things I listed helps some of you, 
I looked for years for anything to try, 
I know they don't help everyone, but they might be worth trying if you are looking for things to try


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## Caitedid

Fibromyalgia misconceptions: Interview with a Mayo Clinic expert - MayoClinic.com

Interesting article I ran across this morning about misconceptions of fibro. Thought it rather telling that she was talking about how many fibro-havers are Type A perfectionists who will make themselves sicker by refusing to slow down. Anyone else have this problem?


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## dlskidmore

Caitedid said:


> Thought it rather telling that she was talking about how many fibro-havers are Type A perfectionists who will make themselves sicker by refusing to slow down. Anyone else have this problem?


I get worse if I stay in bed and take it easy on bad days. I get back to good days faster if I trudge off to work anyway. I think it's important to be able to discern between injury and fibro pain and treat them differently, and not overdo in a sudden spurt of activity on your good days. Try to keep activity level constant unless you have an injury to baby.


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## Caitedid

My issue is that with the farm, milking, garden, house, wedding planning, etc. a normal day for me is 15-18 solid hours. I can power through a bad pain day, but the exhaustion makes a lot of my work unsafe, and I get BEYOND emotional.


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## WV Farm girl

I'm a type A personality. I suffer far more pain during high stress times. A few years ago I was miserable. Between a poor marriage, a farm, full time employment and a Carry Out business (worked about 70hrs a week) I was usually in a lot of pain.

I finally found a doctor after 3 yrs of searching that diagnosed me. (I had already diagnosed myself but 2 other Drs and my then husband kept telling me there was nothing wrong with me and it was all in my head.) This doctor tried cymbalta and lyrica, both which just made me sick, but did tell me that good sleep was the best "medicine".

I can tell you that since my divorce nearly 2 yrs ago my symptoms are much less. Less stress I imagine, no more Carry Out or sadly farm (except on the weekends at my Dad's)and definately no more jerk husband. I still have my days. This weekend I am hurting and moving slow, but most days are acceptable. I just started on Ambien and after a nights sleep with it I feel great!


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## calliemoonbeam

Caitedid said:


> Fibromyalgia misconceptions: Interview with a Mayo Clinic expert - MayoClinic.com
> 
> Interesting article I ran across this morning about misconceptions of fibro. Thought it rather telling that she was talking about how many fibro-havers are Type A perfectionists who will make themselves sicker by refusing to slow down. Anyone else have this problem?


I used to! I don't know how many times I overdid it and really messed myself up before I finally learned to listen to my body. I still have the occasional spell when I push it too far, but mostly I've learned to work a little and rest a little and I've learned to worker smarter, not harder, so that I can keep it under better control. 

But I've had mine for 8-9 years, and it's trial and error, and I still have to take regular pain medication to be able to do anything, without it I'm pretty much in the fetal position. I hate the medicine, but know it's a necessary evil.

My doctor told me several years ago that she noticed that most people who seem to get fibro and to have the worst cases of it are the Type A personalities and/or people who were really strong and were able to work like a horse all their life. Then suddenly, it's like a switch was flipped, and they get fibro. That describes me to a T!


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## txplowgirl

Hidy everbody,
Well, let's see, it's been a while since i've posted. 

I finally had to come off the truck, couldn't take the pain and fatigue with it anymore. 

Was diagnosed in 08 with Fibro and Chronic Fatigue Syndrome and for the next 2 years I dealt with it pretty well, but in '10 I started going downhil. Came off the truck in last Sept a year ago now.

In that time I have found not only that I have Fibro and Chrinic fatigue but I have a few other problems as well. My back and neck has hurt me for years and i'd go to the drs and they'd tell me it was because of the Fibro and here take some more pills. Argggghhh. None of the meds helped, just made evrything worse.
About 6 months ago someone recommended going to see a Chiropracter. Ok, why not see if maybe some adjustments might help. Boy was I in for a surprise. 

Went and had MRI's done.
I have in my neck 3 bulging discs with a bone spur, I also have 3 bulging discs in my lower back. The lumbar area. Right bewteen my shoulders my spine is curved at 20 dgrees. Scoliosis. And I have no cushoning in my shoulder joints, just bone on bone. And according to the dr about 60% of my spinal nerves are pinched and I have Degenerative Disc Disease. Can anyone say OWWWW!

I am now on 5 mgs of Hydrocodone and 500 mgs of Acetaminophen twice a day and that keeps my pain level between a 5 and 6. Am sceduled for a nureologist but the only one I can see the earliest is Nov 5. 

There are a lot of people out there keeping those Nuerologists busy. 

Now I understand why dr's would tell me just do some low level exercises I would hurt worse if not better. I can't stand for longer than 30 minutes at a time or my legs and lower back will go numb. I have to set with my legs propped up or that will cause my legs and back to go numb. 

But in a way I feel a lot better because I know now that I have bigger problems and that some of my pain and fatigue is because of pinched nerves and bulging discs. I'm in hopes that the Nuerologist can help with those problems and once I get the nerves and discs are taken care of some of the fatigue at least will ease up. Lord I hope so. 

Never been to a nuerologist so we'll see.

Oh and have sensitive teeth so bad that I use a straw because drinking anything hot or cold straight hurts to bad.

Also have you been unbalanced so bad that you're standing sideways and you go to walk through a doorway and you run into it instead? I've hit my nose several times and my son looks at me and say's Mom, I think you've had enough to drink, why don't you set down a while?
I know, one of those "you had to be there" to see the humor.


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## calliemoonbeam

txplowgirl said:


> Also have you been unbalanced so bad that you're standing sideways and you go to walk through a doorway and you run into it instead? I've hit my nose several times and my son looks at me and say's Mom, I think you've had enough to drink, why don't you set down a while?
> I know, one of those "you had to be there" to see the humor.


My son teases me about this all the time, lol! And I don't even have your spine issues, so don't feel bad. I'm forever walking into door frames, furniture, etc.  I don't know if it's the fibro itself, the pain meds or what, but I just feel so off-balance all the time.

Hope it goes well with the neurologist, good luck!


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## dlskidmore

txplowgirl said:


> My back and neck has hurt me for years and i'd go to the drs and they'd tell me it was because of the Fibro and here take some more pills.


Arg!! That drives me up a wall! I was diagnosed in the early 90s, and was slowly headed downhill over time, but a couple years ago I got fed up with Doctors not listening to me and just became my own doctor and physical therapist. I spend a lot of time reading, just add "nih" (national institute of health) to any Google search and you'll get a lot of results that are abstracts of published studies, and get a good idea if any alternative medicine ideas have any basis in science. I'm skeptical though even of the studies, as they often don't control well for confounding variables and don't consider things I've read about in other studies.

I do get a little professional help now and then, a podiatrist helped me with the wart on my foot, a massage therapist helped me recover from a shoulder injury, and once the wart is totally gone I'll probably go to a fendelkrais specialist for gait analysis and more physical therapy. 

I can't say enough about how much good it does to read up on your own conditions and do self-experiments. I feel a little bit like a hypochondriac sometimes, but I'm actually improving a lot by paying more attention to all those little niggly issues and fixing them instead of just accepting the pain.


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## beccachow

hey guys I am having the most bizarre tremors...not hands, but my arms, like I can't hold my arm extended, elbow out to type etc. Anyone??


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## calliemoonbeam

Hi Becca! I'm so sorry! I get those too, and I type for 12 hours some days, so I feel your pain. I also get muscle spasms like a charley horse, only in my arms sometimes.

Your electrolytes me be out of whack or you may be slightly dehydrated. Are you drinking plenty of water? If not and if you drink much tea or coffee it will cause tremors and/or spasms. I've tried several herbal suggestions, but none really seemed to help me.

Potassium and calcium sometimes help, if you have any. The normal over-the-counter potassium dose is 1 mg, and I'd start with just one pill, too much is just as bad as not enough. Some people say magnesium will help, but it makes mine worse!

Drinking Gatorade might help replace lost electrolytes too, if you have access to that or the items needed to make some homemade. 

Other than that, just some gentle stretching might help. Take your right arm and lay it across your body towards the left at the level of your shoulder. Then use your left hand under your right arm to reach up and sort of pull your right shoulder towards the left and then run it down the length of your arm, using a slight pulling pressure all the way down to your hand. 

Then do it to your left arm. I do about five each and then when I'm done I let my arms hang by my side and, with my palms facing forward, raise them backwards as far as I can and arch my back to give them a slight stretch. I do these several times a day, and it has seemed to help me.

Hope some of these ideas give you some relief, hang in there! {{{hugs}}}


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## nduetime

Went out and rode saturday for the first time since my accident. yes, I wore a helmet and riding boots. :cowboy:Not taking anymore chances! Everything running smoothly until I decided he needed to cross a black plastic culvert. Just then the wind picked up and blew it towards him and then blew a huge sheet of plastic up in the aire like a ghost.:doh::smack:runforhills: My poor boy wheeled around and spun about three times before I got him calmed down! I stayed on and gave him a pat for not tearing off like a madman. He did ok and I did too.

Woke up sunday am wondering how in the world i was going to get out of bed. After not doing much of anything for so long after the accident, every muscle I had hurt! I managed to hobble down to the hot tub and soak for a bit. Was then able to do chores and....go back out riding to the same place we were at yesterday.:lonergr::hobbyhors This time my mustang crossed over the culvert with no problems. I had gotten off and put the plastic far away where it would not bother him or any other horses. He crossed over that culvert like the steady boy I know him to be. Little bit sore today but it was worth it to get back on the horses again. Hope ya'all had a great weekend too!


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## Caitedid

Nduetime- Isn't it amazing how much pain we can put up with if our brains are pleasantly occupied. Would like to see more of this in holistic pain management.

How do y'all handle your partner wanting to fix everything?


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## dlskidmore

Caitedid said:


> How do y'all handle your partner wanting to fix everything?


Send him to massage classes. Mine took the classes while we were still in college of his own idea. I have hired a professional from time to time because his hands are not strong enough to keep it up for an hour, but he can certainly take the edge off when I can't sleep, and he gets to feel less helpless in the face of my pain.


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## mountainwmn

I do get irritated by the Dr's ignoring me. Oh, its just fibro. With this latest issue I lost 25lbs, most of my hair, they could see inflamation in my stomach and the blood test showed inflamation in my GI tract. But its just IBS because I have fibro. 
Now I have opacity in my lenses along with my dry eyes. Is that spelled right? Anyway I'm sure thats caused by the fibro also. I could go on and on but all it does is make me want to scream.


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## dlskidmore

If you're having digestive issues, have you tired a grain free low fiber diet? Eat all the stuff they say isn't good for you, bacon, eggs, fatty meats, clarified butter. (Dairy proteins can cause issues for some people's stomachs, but if you melt the butter and wisk it with water, you can use the good fat that rises to the top and throw out the water that contains the proteins.) If you like organ meats, they can replace a lot of the vitamins you're missing in the higher fiber veggies, otherwise you'll need a multivitamin with that. Experiment with it for 6 weeks and see how you feel. If you feel better, reintroduce one food at a time to see which one caused the problem.


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## Stiffchick

I just wanted to share some information with you all. I do not have Fibro, but I do have severe psoriatic arthritis. (I was home bound and mostly bed ridden for about 2 years) I was able to get SSDI, and with it the most important to me, Medicare. With medicare or your own private insurance (inmost cases) you can apply for a grant from the "healthwell foundation" to help cover the costs of some meds. They work with a variety of illness and issues. organ transplant recipients, kids with asthma, cancer patients, ect. I called and applied over the phoen with a very friendly phone rep, within 10 minutes of answering questions, I was told I qualified for a grant to cover the cost of my $500 med copay for the rest of the year. you do have to apply yearly, and sometimes they dont have funds available one month, but if you call back the next they do. But they are very friendly and helpful. I think their website is healthwellfoundation.org 

Good luck, and I sincerly hope you all find some relief for what ever ails you.


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## nduetime

My Dh is terrible (or wonderful depends on how ya look at it) about wanting to fix things. He is constantly coming up with Hey, maybe it is this... or that...He cannot stand the fact that there is no "cure" for fibro. It makes him crazy.I just nod and smile and say gee, well, ya never knw....


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## dlskidmore

I'll likely never cure my fibro, but I can eliminate all the stresses that make it a daily problem.


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## Caitedid

Nduetime- My dfiance is the same way. He'll say "Well I was reading over lunch about...". Then I have to explain that I've tried most of the things he's hearing about, that I know what I need to do to keep myself on the right track, etc. I feel bad because he's right that my health does directly impact him, but sometimes I want to kick him in the shins. Which is terrible because he's fantastic.


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## calliemoonbeam

I know how frustrating it must be when your spouses want so badly to make you well when you know they can't, and I'm sure they're frustrated too. But look on the bright side...at least you HAVE spouses for support and help, and they love you enough to want to help in some way. 

I do this all by myself and, although I've been a very strong person my whole life and never needed anyone before, sometimes I could just cry over wishing there was someone there to gently hug me, rub my back or even just make me a cup of hot tea or some soup when even that seems like too much pain for the effort. I know it's hard, but be thankful for the blessings you have. 

Stiffchick, thanks for sharing that info, maybe it will be of help to someone. Feel free to jump in here too. There's some argument about whether fibro is an autoimmune disease or not, but even if it's not, people with it tend to develop other autoimmune diseases, and we all suffer from a lot of the same symptoms. 

This sticky was originally started when a lot of us were posting many different threads, and it was suggested that a sticky would be good. We certainly don't have a monopoly on pain or other issues related to autoimmune diseases, so jump in any time you want. I don't post often myself, but it's nice to know we're all here to support each other. :grouphug:


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## farmergirl

I was diagnosed with FMS 4 years ago, though suffered horrible insomnia and muscle pain for at least a year prior.
I am a doer, and it took a long time for me to come to grips with the fact that I was simply gonna have to slow down and do less. 
Sometimes just too much social interaction can push me over the edge and cause a flare up.
I pace myself. I have learned not to push it when I have good days. It's a work in progress, but I have stopped taking daily muscle relaxers and the Lyrica which helped so much with the pain but left me mentally foggy and unable to drive.
In addition to managing my activity level, another thing that has really helped is avoiding any and all chemical food additives. 
If I have a few days of restless sleep, then eat some Doritos and drink a diet soda, I'll be in crippling pain the following day.
Takes years to separate out all the variables, but I can honestly say that I mostly feel better physically now than I have in the past 5 years.


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## jcatblum

About the middle of July everything changed for me! Went from hours of garden and animal chores each day to barely able to walk down the front steps or turn the door knob. Many test & appointments later my general dr is certain it is fibromyalgia. She has referred me to a rheumatologist for an official diagnosis. 
So far I learned that an 8 hour day of running errands will leave me in bed for 2 days. As long as I manage to do very little the pain has been manageable, but honestly I am not doing 1/4 of what I was before. Preparing dinner is too much most days. Makes me thankful I have canned beef stew & other easy meals before I got sick. 
Yesterday I started Neurontin & felt the best I felt in 2 months. I feel a tad tipsy but relief from the pain was amazing!!! I know there is mixed reviews on the drug but 1 day of relief is a great start.
Curious to see how my body adjust to the drug. 
I am working on adjusting my diet to identify any food triggers. Many "bad" things I have previously eliminated to manage my chronic migraines. Also working on documenting everything I feel & how I am managing to identify what is working to make me feel better.


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## Jaclynne

Thought I'd check in, I haven't posted in a few months.

This last few months have been a major struggle w/ diabetes. Seldom was the day that my #s were below 300. I was eating the prescribed diet, but refused the meds.

I also have osteo arthritis, copd, and fibro. I hate meds and manage to make it on only tramadol for pain, bp med for edema/lungs, and inhaled steriod for lungs.

This summer nueropathy attacked my feet, it was/is driving me crazy. I scrub my feet 12 times a day because it feels like something stuck to my feet, I move my legs so much at night I'm wearing a spot on the bed sheets, and that's not touching on the piercing stabbing and pin pricks. I've several members of my family that have lost feet/legs to diabetes. This was/is scary.

I decided to go at this thru diet. The official diabetic diet is useless for me, maybe because that is how I always ate. 

I began juicing for 2 meals and just salad and meat for main meal. At first I was using a juice extracter, but have changed to a whole fruits juicer (I hated the waste of the extracter and it was more expensive.) 

I don't worry about calories or fat content. I just juice 1/2 greens, usually spinach, kale and dandelion, and cucumber, carrots, garlic, beets and the fruits like apple, berries, figs, pineapple. Sometimes I throw in a few raw cashews. You have to add liquid for the whole foods juice, so I use EAS protein shakes. I don't do well without enough protein.

For the main meal it's salad and roasted chicken, lamb chops, ground goat patty, fat ribeye, or whatever I have in the freezer. Sometimes I have pan fried cabbage or stirfried veggies instead of salad, or kraut and sausage, or kale and maple breakfast sausage. The only extra fat used is coconut, olive oil or butter.

No bread, rice, potatoes, or grain of any kind. I do have fresh beans/peas sometimes, but haven't tried the dried versions yet. No extra sugars, sweets, or artificial sweeteners. I drink water and sometime cherry juice or tomato juice.

I jokingly call this my "Save the feet" diet, but I see it's quite similar to the paleo eating style. I've gotten off track a few times and it shows the very next morning w/ blood sugar back up in the 200+ range. I know that stress is usually my trigger for poor eating, like starting the grief counceling meetings - it took me three days to get back on track.

Six weeks now and for the last 2 wks my bs # are between 95 and 130. I have lost 40 lbs too. Eating this way has helped with the overall pain levels, as well as cut the muscle spasms down to nearly nothing, that means less pain meds. Nueropathy is still making me crazy, but I understand that may take a long time to reverse. 

I like my feet, I think I can do this.


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## Caitedid

Jaclynne- Good luck with the new diet! I know I really need to get more serious about improving my eating habits too.

Jcat- I had the same problems right when I was diagnosed, and still do if I over do it. I am also on the Neurontin (gabapentin is the generic) and it has made a HUGE difference. I have been using my crockpot almost constantly to make dinner and the like, as I milk cows and don't get home until fairly late.


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## dlskidmore

Jaclynne said:


> Nueropathy is still making me crazy, but I understand that may take a long time to reverse.


In addition to the low carb diet, some people find minimalist shoes useful in reversing nueropathy.

Popular:
Vibram FiveFingers : Barefoot Sports Shoes : Natural & Barefoot Running
Home Page | Soft Star Shoes

More Affordable:
The Original Medieval Moccasins
https://www.lunasandals.com/
Huaraches Barefoot Running Sandals of the Tarahumara Indians | InvisibleShoe.com

If you can't feel your feet well, walking around barefoot might not be safe. A minimal shoe allows room for good circulation and stimulates the nerves in your feet by allowing your feet to feel the texture of the ground, while still affording some protection against sharp objects.


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## Jaclynne

Thanks for the shoe ideas. I'll check them out. I pretty much live in Crocs, I like the MaryJanes. I've never been a barefoot person, and really need more ankle support than the Crocs offer, but they sure are comfy for bad knees and most of them weigh near nothing. 

Thanks,
Jackie


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## dlskidmore

If you have weak ankles, you'll need to wear minimal shoes like it's an exercise/therapy at first. Just a half hour or so a day at first until that's comfortable, then extend. I was nearly disabled when I started wearing them, took me about three months to recondition my feet to hold themselves up better, but it fixed several other muscle/joint issues I was having that really aggravated the fibro.


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## CageFreeFamily

I was just deviating from my normal hang out in the goat and guard animal forums and found this forum. I thought I'd pop on and say hi. 

I was diagnosed (the 1st time) in 1992 when I was 12 years old. I suffered the full spectrum of symptoms for 16 years while trying all kinds of treatments including the $500/mo experimental drugs. 

In 2007 a very kind doctor (one that would spend up to an hour with me at an appt) told me that we had reached the end of our options and that we could start over with the drug list, but that it was his personal opinion that I should stop and try something different, "like acupuncture." 

Now, acupuncture did not cure me lol but I did wind up finding my way to a symptom free life by spring of 2008. By summer of 2008 my family and I ditched everything and went on a year long tour of the country. Since then I've been messing around with all that I did to try to find out what was actually necessary and what wasn't. It's been scary and wonderful in turn, but even with my tinkering and misbehaving I live a mostly Fibro-free life.

I've been writing about the processes on my personal blog, trying to chronicle (as much for myself as for anyone) what I'm learning about anything that causes the symptoms to return and what it feels like to get back on the wagon.

Because of this I've had so much contact with others who are searching, but also with others who have found a way out of the supposedly incurable FibroMonster. 

Anyway, I thought I'd share. I write about it at Healing Rebel (not Rebel Healing!!) in case anyone would like to connect.


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## beccachow

Hi, CageFree! Welcome aboard. I have to go play barbies with bratling in a few minutes, but will be checking out your blog soon.

This has been my worst week ever. I have had constant aching, which I can deal with, but the sudden charlie-horse twisting/cramping thing has been my worst enemy this week. My feet have had charlie-horses, too...I didn't even know that was possible. Poor bratling; we'll be playing something and then it's like, "ooooOOOOOOOOOOoooooouch...", then business like usual. Cuckoo crazy, yes? And I can't get up and down...ugh. I don't usually whine, but I know you guys will understand. I have been gulping Lyrica like chiclets and really wish that stinking doc had given me an escape prescription. I am going to beg for muscle relaxers, I think. The neuropathy has been nuts as well...shaking my hands to "wake them up" is constant. I need to write this sttuff down so I can recall it all when I see him at the endof this month.

I am still maintaining, however. Bratling has only missed one or two days of home-schooling, easily made up. Goats are escaping daily and provide me no end of entertainment...bratling's new pony is making for an interesting project as the other horses dislike him and I need to build some kind of seperate pen for him. Fun goes on and on!!! Caught a starling in my basement today...how the HECK he got in there I don't know!!! 

How is everyone?


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## calliemoonbeam

Welcome CageFree! We don't post here all the time, but it's nice to know there are others here. 

Becca, sorry you're having a rough week. Sometimes it seems like I LIVE on muscle relaxants, lol. I'm on two different kinds and rarely go a day without having to take one or the other, or both! Sometimes I can't even get dressed without cramping up, it's ridiculous. I get them everywhere, even my arms and neck, but have terrible ones in my legs/feet, my upper belly and my back. Have you ever gotten one in your upper inner thigh? Ohmigosh, that one made a blue streak fly out of my mouth, lol! Worst one ever!

Other than the muscle spasms, I'm doing pretty well at the moment, knock on wood!


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## jcatblum

My rheumatologist referral came today, have to go all the way to Dallas to get seen. The Gabapentin has helped alot, but still can't get over the insomnia & the cold is painful! However the past 10 days or so I have been taking it I feel better than I have in months. Still not being real productive around the house, but I have been able to do 30 min of yoga a day, put away laundry, some cooking & clean the bathroom. All things I wasnt able to do a month ago. 
Also bought a copy of the Wheat Belly book & I am working hard to remove gluten & most sugar. Don't waste your money on the book, I think all the info is available online with a few google searches. 
I know I had been taking lots of gluten out over the last 6 wks or so (not GF just reduced). Two days this wk I had gluten at every meal (pasta, bread, cookies all the good stuff) & was in major pain the next day. Can't say the pain was from the gluten, but sure has helped me avoid gluten the past 3 days.


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## Caitedid

Jcat- I use an electric blanket on the couch and that helps tremendously for keeping warm.


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## jcatblum

Caitedid said:


> Jcat- I use an electric blanket on the couch and that helps tremendously for keeping warm.


DH bought me an electric throw the other day. Gets nice & warm & the dogs seem to like it too. It turns on really easy & I find them laying on it when I am not using it. 

I was awake all night. This insomnia is rough!!! I either can sleep for 20+ hours or not sleep for 2 hours. Been married 13 yrs & DH has never gotten breakfast when he wakes @4. Last couple weeks he is getting spoiled I have been making him coffee & breakfast. Today I was trying so hard to go to sleep I didn't cook or make coffee. He was quick to comment on being hungry! Guess he has enjoyed my insomnia.


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## ChristieAcres

Diet is huge with FMS. We eat Paleo Style, which is gluton free. Main issue is simple carbs...sugar in the blood... No, I don't eat sugar as it is a trigger. Raw honey isn't a trigger, however, at least for me. Right now, I am snuggled under a warm fuzzy blanket, sitting on the couch, with my morning coffee. We heat with wood, which also helps my symptoms...dry heat!


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## Jo in PA

I have had FMS for 22 years. The only medicine I have found that helps is Gabapentin.


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## ChristieAcres

I've had FMS for 24 years, on zero meds, solely treating myself via diet, and am physically active. The Winter is harder, but wood heat helps dramatically when I am symptomatic. That said, everyone is different, and have other conditions, also. I have CFS, also. Lately, haven't been hiking much, but have to condition slowly to get back to that (elliptical and t-tapp). Also, will add, that I am not a candidate for meds at all, too many reactions to every one I have ever taken. So, I don't have a choice.


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## dlskidmore

lorichristie said:


> Also, will add, that I am not a candidate for meds at all, too many reactions to every one I have ever taken. So, I don't have a choice.


I much prefer to work on my triggers than slap a band-aid on the symptoms. I hate being tied to a pill bottle, and the list of potential side effects in the literature scares me off ever trying the newer stuff my doctor has tried to push on me. I've had FMS for 15 years. I occasionally take muscle relaxants when I overdo it, and pain killers if it's bad enough to interfere with sleep. I don't ever take meds during the day any more. Pain is the body's signal that something is wrong, and if I take pain meds while active I may overdo it again and perpetuate the cycle. FSM may make the pain hyperactive, but there is often a legitimate root cause I need to address. The last two years have been steady improvement through diet, minimal shoes, and mild exercise. I'm slowly shedding excess pounds, which will hopefully lessen the strain on my legs further.


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## ChristieAcres

dlskidmore said:


> I much prefer to work on my triggers than slap a band-aid on the symptoms. I hate being tied to a pill bottle, and the list of potential side effects in the literature scares me off ever trying the newer stuff my doctor has tried to push on me. I've had FMS for 15 years. I occasionally take muscle relaxants when I overdo it, and pain killers if it's bad enough to interfere with sleep. I don't ever take meds during the day any more. Pain is the body's signal that something is wrong, and if I take pain meds while active I may overdo it again and perpetuate the cycle. FSM may make the pain hyperactive, but there is often a legitimate root cause I need to address. The last two years have been steady improvement through diet, minimal shoes, and mild exercise. I'm slowly shedding excess pounds, which will hopefully lessen the strain on my legs further.


Yes, just like you, I work on my triggers, once identified...they are eliminated, if possible. Dropping sugar was what I did for my FMS, and that was 4 or 5 years ago, dropped 20#s. Of course that included dropping all empty carbs, most simple carbs, and eventually going Gluten free. With the weather changing, I had to remind DH WHY I wanted to light a fire in our wood stove... It felt damp inside, so that is how I felt, too! Not a nice feeling. I don't do cold, anymore, either.


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## SageLady

For those of you on Neurontin/Gapabentin - do you have to keep increasing the dose for it to keep working well for you?

It has been so helpful for me, but after 6 months and one big dosage increase, it doesn't seem to be working as well for me. Wondering if I will have to keep taking more and more. The only side effects I have from it is sleepiness and short term memory loss, but I would hate for that to get worse! I've gone back to having alot of caffeine again to stay awake and that's not good for me either. I had totally kicked caffeine and sugar before I got on the Gabapentin. It's worth it though so far. It helps so much with both the muscle pain and the nerve pain!


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## jcatblum

I have been taking Neurotin for about 2 wks. Started with 100mg -- now up to 300mg. Dr said to max out @ 400. I am not sleepy & no more foggy than normal. When I have a bad pain day I went up to 200 same for 300. If defiantly isn't as good as it was the first day. 2 days ago I started 300mg & right now my skin is burning, hips & jaw hurt so bad. Even with a sleeping pill & the 300mg I managed to sleep 3 hours last night. By the time I see the Rhem next month I expect to no longer be getting relief from the Neurotin. I have always been that way with most meds. Usually most meds last me a few months tops. With my migraines I would rotate through different meds. Don't know why my body always builds a tolerance so quickly.


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## SageLady

I started out with 300mg. of Gabapentin a day and am now taking 900mg. a day per doctor's orders. It feels like I need another increase in dosage after being on this since July.
I wish there was something I could take that I didn't have to keep taking more and more of it. This can't be good for my body longterm. I'm someone that never took any drugs before. I don't like that I have to do this to function....but thankful that it's been helpful.


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## jcatblum

4 hours of sleep last night & that was after 8+ hours of being in town yesterday with appointments & errands. Expected to sleep better since I only had 3 hours the night before. I think if I could conquer the insomnia it would help my pain extremely!! 
Went to the chiropractor yesterday as well. I have been seeing the same Chiro for 2 yrs very regularly. Has been a huge help for migraines & most other things but adjustments do not seem to offer any fibromyalgia relief. I do love my chiropractor, even though he seems skeptical on fibromyalgia as a diagnoses for anyone. 
Had reduced gluten the past month & completely gluten free for a wk now. 
Bought a new DVD set. Yoga for inflexible people. Has an entire series of yoga while sitting in a chair, so I am going to try it out as the kids do their school work this AM. 

Anyone tried tai chi? I considered it but went with a new yoga dvd since it is more familiar. Sad part is the yoga DVDs I already own are too challenging for where my body is now. 
Willing to try everything to get back to a normal life!


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## mountainwmn

I have been eating mostly the stuff that isn't good for me. At this point potato chips and bacon and eggs and some meat. My tummy likes it anyway. But with this cold snap I am so stiff I can barely move, my hands are the worst. Its 74 degrees in my house and I am having a very hard time typing.


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## dlskidmore

jcatblum said:


> Anyone tried tai chi?


I tried a couple videos and a couple books, not all of them were good for me. Don't give up on the idea if the first thing you try does not work for you. The stuff that worked best was just doing the basic standing stances, horse, empty, and bow. This work son balance and core strength, and a bit of leg strength. I never really got to the full lessons on the DVD, I just don't have the coordination to wave my arms and legs at the same time. There are some "Chi Gong" exercises recommended for warm up that I can do in addition to the basic stances.

Has anyone tried Fendelkrais? I am thinking that is my next stop when my progression slows down. I have already ironed out a lot of gait issues, but I know my hips are still lopsided.


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## dlskidmore

mountainwmn said:


> I have been eating mostly the stuff that isn't good for me. At this point potato chips and bacon and eggs and some meat.


Actually, minus the potato chips that's not too bad. Minimally processed, low carb, no veggie oil or grain. Add some greens fried in the bacon's grease in place of the chips, or a salad with sour cream based salad dressing with the meat. (There's a little bit of stuff I shouldn't have in salad dressing mix, but it's a fairly small amount blended into a pint of sour cream.)


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## dlskidmore

jcatblum said:


> Bought a new DVD set. Yoga for inflexible people. Has an entire series of yoga while sitting in a chair, so I am going to try it out as the kids do their school work this AM.


There seem to be two by that title, which do you have?
Amazon.com: Yoga For Inflexible People:
Judi Rice (Actor), Yoga for Inflexible People (Director)
Amazon.com: Essential Yoga For Inflexible People: Maggie Rhoades, Michael Wohl: Movies & TV


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## jcatblum

I bought the 3 DVD set 
http://www.amazon.com/gp/product/B004L5TVPU?ie=UTF8&force-full-site=1&ref_=aw_bottom_links

The essential yoga for inflexible people flows better than yoga for inflexible people. 
The first one you linked, it is like yoga on the Wii fit. You do a pose it fades away announces the next pose. They don't flow together. The essential one was very relaxing. I did 3 different parts today & all of them gave me some relief without being too challenging.


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## nduetime

I have nearly elimated sugar from my diet. I use raw honey if i need to bake and read labels like an addict.I try to stay from any added chemicals at all. If I cannot pronounce it i do not want to eat it.That being said, we eat pretty simply. I have been having a lot of muscle spasms and cramps again lately too. it seems to go in cycles for me, along with weather changes. I have CFS and Raynauds as well so the cold and damp that we have been having lately are not helping much.Love my hot tub though! Lately it has been 4-5 times a day.Still back in the saddle too. Riding even more than before the accident. I really need to tune up the horse and myself. Wearing my helmet every single time without fail. I do not ever want another concussion again.I have lost over 10 pounds and hoping to keep that going.Muscles are hurting like crazy but I am terrified of neurontin. Everyone in my family that has tried it ended up with brains like swiss cheese so i have stayed away.Guess I will just keep on, keeping on. Stay warm and flexible everybody!&#9829;


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## ChristieAcres

From all the posts, I am once again blown away by how different, but also how similar we all are. It is clear what works for one, doesn't work for another. How maddening that is!

This fuels my resolve to faithfully stick to my regimen. DH knows I feel better when warm, so he is insuring we have more than enough firewood. Although we have about 10 cords, he is out there splitting more (fairly dry). Wood heat is the only heat but the sunshine, leaving me feeling warm inside. If that makes sense. 

These past few days, I am sleeping even more, and working to bolster my immune system.


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## dlskidmore

lorichristie said:


> From all the posts, I am once again blown away by how different, but also how similar we all are. It is clear what works for one, doesn't work for another. How maddening that is!


My pet theory is that Fibromyalgia is just a bad reaction to stress. The type of stress that triggers it is different for everybody. So yeah, everybody had to find what works for them to relieve their stresses. The stuff that worked for me wasn't recommended by any doctor I went to, so I try to spread the word of my experiments that might be worth trying, but I know they won't help everyone. Just keep your hopes up and keep trying things...


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## Caitedid

Having the worst fibro/arthritis/sciatica/spinal stenosis flare I've had in almost a year. It really is amazing how much easier it is to deal with when you know what's going on though. When I first started having flares I honestly thought I was losing my mind, so you can really put up with a lot when you know you're not just going crazy or really lazy and stupid.


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## SageLady

Caitedid said:


> Having the worst fibro/arthritis/sciatica/spinal stenosis flare I've had in almost a year. It really is amazing how much easier it is to deal with when you know what's going on though. When I first started having flares I honestly thought I was losing my mind, so you can really put up with a lot when you know you're not just going crazy or really lazy and stupid.


I agree with that! I spent years wondering what was wrong with me and when I finally got diagnosed in the past few years, I was so thankful to know exactly what I was dealing with and why I hurt so bad. It has made it easier to deal with and no one questions if it's all in my head anymore, including myself!
I have Lupus, RA, Fibro, DDD, herniated disks, and severe spinal stenosis. The pain I experience somedays is unreal and other days it is not so bad. Having great difficulty walking these days and having to use a wheelchair some. I hate having to give into the back problems, but I could hurt myself worse if I don't take it easy on myself according to my doctor. I hope and pray for things to get better, but I gotta be realistic that they probably won't. Physical therapy in the pool and meds have been a godsend for me, plus a very supportive family that I am very thankful for!


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## jcatblum

I know last wk or so I posted that I either sleep a few hours or around 20. I have figured out that when I sleep 20 it seems to be when I over do it but just can't figure why or how to get others to understand. 
Friday was a pretty normal (meaning minimal) activity level. 
Saturday was away from the house almost 8 hours, but was low activity. I have been bed shopping for at least a month. Found 2 twin XL adjustable bed bases on CL - $400 for the pr. They are not the wall hugger design & dont have the wave massage, but for a few thousand $$$ I figure it was worth the sacrifice. I had already shopped for mattress & knew sears had the best sale on the tempurpedic currently. Sears was special order only. Stopped @ 2 other furniture stores. Both within blocks of sears. We found icomfort on sale $1500 for the pr, went with that. Then on the hunt for twin XL sheets. Sounds minor but took 4 stores. Stopped had dinner headed home. Was home @ 630 & crashed by 7 asleep a good solid 4 hours & back asleep another 2 or 3. 
Sunday the kids & DH moved the old bed out, rearranged the furniture & set the new bed up. All i did was point & direct. Took most of the day since of course kept being interrupted by goats getting out of the fence & all the other normal stuff around the farm. About 9-10am I had a small meltdown, exhaustion pain & tears. But room was torn apart & could not rest. DH put my bed together but of course wasn't finished with the room & insisted on continuing to finish it. Was close to 3 before I had my room done & tried to rest but we all know what it is like when you want to fall asleep & can't. 
Last night I managed to fall asleep around 1 or 2 AM sleepy until 1130 today then by 1230 was back asleep until 7pm. I wish I could find a consistent happy medium. Would love to reach a normal sleep level & activity level. 
My husband is starting to understand that if I have a big day then the next few days I am in bed. Just wish he could understand what a big day is. 
Amazing how much my life changed in 6 months. Oh I also had a new pain Sunday. My tailbone. Had to lay on my side. Couldn't sit or lay on my back the pain was just WAY too bad. 

Those who removed gluten from your diet, how long until you noticed a difference?


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## Jaclynne

jcatblum - you're gonna love the new bed, that's what I have, and it made a huge difference in my sleep comfort. Before I couldn't stay in the bed more than a couple of hours till my back and knees began hurting, now I get at least 4 hrs sleep. 
Unfortunately , I usually get at most 4 hrs sleep. I do nap in my chair in the daytime though.
I don't know what to tell you about the tailbone pain, I've just begun experiencing that in the last month. I blamed it on my recliner (or cooler weather), but it hurts in bed too.
I've just upped my pain meds this week trying to get more sleep.
Oh, I almost forgot to answer, I've been sans gluten/sugar/dairy for 2 months now - I actually forgot to take my cane when I left the house one day this week.

Jackie


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## SageLady

I've found the best bed for me is a heated waterbed. It is pure bliss to lay down in my bed when I'm hurting.
Found out about using a waterbed when my Mother who had Rheumatoid Arthritis and Fibro was in the hospital. They used a waterbed for her. Her doctor told me there are no pressure points in a waterbed and is best for a painful body.
Of course, waterbeds were popular back in the 70's, but they don't sell them in stores anymore, so DH started looking online and found plenty of online stores still selling waterbeds, as so many people still want them.
My waterbed is just wonderful and I wanted to share with you all that you might benefit from having one.


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## ChristieAcres

My diet is sugar, gluton, and almost dairy free. Within one month, I noticed a big difference. As for a bed?

8 years ago, I got married to my current DH, and he was very uncomfortable sleeping on my bed. So, we got rid of it, and tried a few other kinds. The winner for us both, surprised me! DH built us a platform and covered it with plywood, then we placed a memory foam mattress on top, but that didn't work for me. I bought a memory foam topper, and that did the trick. Our travel trailer was quickly modified be DH so I would be comfortable sleeping in it. He modified the base of the couch, made it wider, covered it with plywood, and I recommended placing my DD's mattress on it (pillow top). Then, I bought another memory foam topper for it. It is even more comfortable than the bed in our home! I sleep very well on both, with few issues sleeping fewer than 8 hours a night. I am up later, due to drinking coffee later than I should have!

Otherwise, heated car seats, super warm car (PT Cruiser), and heating with wood. Diet, sleeping on a comfy bed, staying physically active, and keeping my environment warm/dry, all together has helped me tremendously. I am glad this is working, as meds aren't an option for me.


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## jcatblum

I will continue on the gluten free diet & the only dairy I have is cheese & with my coffee, sugar is prob less than 2 teaspoon a day. I have had great relief with neurontin so thankful for that. 
A main reason for the adjustable bed was to make it easy to get out of bed. Plus sleeping in the adjusted position to take pressure off certain areas is fabulous. I am facing a hysterectomy & worried about the recovery. (go for another opinion in a wk). Afraid I could never get out of a water bed (though I use to love mine). Could only imagine how a nice warm water bed could be very soothing! 
Oh & DH also has severe obstructed sleep apnea & the adjustable bed is suppose to be a great help. I do keep an extra large heating pad close by for added comfort.


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## dlskidmore

jcatblum said:


> Those who removed gluten from your diet, how long until you noticed a difference?


I made several major changes at the same time, so hard to say. After two years I'm still seeing minor improvements. Just last week something reset in my left knee (hurt like crazy when it happened, but afterwards was looser and more flexible than it has been in years.) I made a lot of major gains in the first 6 months though.

Relapse can happen quickly:
My Health Experiment: Pizza, I Love You So Much, Why Are You So Cruel To Me?


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## Caitedid

Well, have been on the couch all week with what would appear to be a nasty bout with stomach flu. Was blaming it on IBS, but after 5 days I'm giving up the ghost on that. Being VERY careful to stay hydrated, as I know the doctor can't do anything for flu and I'm not paying for ER for a saline drip if I get dehydrated. At least now I'm getting enough sleep.

Hope everyone else is feeling good!


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## jcatblum

Caitiedid hope you are back on your feet soon. Was driving on the highway last night & DD said she wasnt filling well. Next thing I knew she was holding a plastic bag in front of her. Stomach bugs come at the worse time!


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## Caitedid

After some more googling it would appear to be e. coli or salmonella. Since the only treatment for any of these things is rest and fluids, that's what I'm doing. Feeling about a 1000x better now than I did even a few hours ago, hopefully this has run its course.

Guess this is what I get for not freaking out every time I get manure on me.


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## ChristieAcres

Glad you will be okay, but way not fun! Take good care of yourself, and continue to get plenty of rest.


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## jcatblum

Past few weeks i have been sleeping through the night, without issues at all. 
After a month of avoiding almost all gluten I slipped!!! Not just a cracker, but several days of gluten. Small doses- shared a sandwich with DH, flour tortilla, a pancake, piece of pizza, spaghetti. Each was a small serving not a complete meal full of gluten. Last night & tonight I can't sleep..... 
The gluten was the only change, so I will make a strong effort to avoid the gluten. Gets hard on busy days away from the house to not grab a quick bite to eat.


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## ChristieAcres

I am so glad you have ID'd that villain of a trigger! Gluten is a very serious trigger for most FMS sufferers.

At our Church, I have befriended a sweet gal, who is turning 82 years very young!!! She has adopted me, to an extent. I was surprised to find out she is a Naturapathic Nutritionist, a brilliant lady. I believe she is an answer to prayer...

Doing well, just a messed up sleep schedule, trying to back it up to midnight has been tough! I have been working out and feel good, just a few issues when the heavy rains hit.


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## nduetime

I have managed to convince my Dh that sugar is poison for us too. He is using honey in his coffee and we are trying really hard to make sure we stay away from ANYTHING with sugar in it. (really very hard to do) Thankfully, i make almost everything from scratch so that makes it a lot easier. I cannot seem to get warm lately which is weird for me. I usually am the one having hot flashes or over heating.i am thingking the raynaud's is really going to be a bear this winter. On a positive note, I have lost over 15# and will keep going. Have to get off the computer now...have the lovely itchy hand thingy this am and cannot stop itching and rubbing them! lol, better hands than feet i say! I will always try to find something good...


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## dlskidmore

nduetime said:


> I cannot seem to get warm lately which is weird for me.


If you're cold, eat more dairy fat, especially butter.


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## jcatblum

This is my first time having a hard time staying warm, too. I keep a hoodie or jacket in each car since running in the store I will be in chills before I finish shopping & can't seem to warm back up. Once I get cold sometimes takes forever to warm back up. Yrs past if anyone turned my thermostat past 68 I instantly knew & became so grumpy!!!
We are not big sugar users here & but I sure love a warm cookie or brownie. Prob the hardest thing to give up. 
Shopping at BigLots I can often find many gluten free products cheaper than at the commissary or health food store.


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## Caitedid

Does anyone else get a lot of pain from pressure in their fingers? Had to close storm windows today and was almost crying from the pain.


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## ChristieAcres

Only when my hands are cold. A few days ago, I went out on our little boat with DH, got too cold, then helped carry the little boat back to the truck...OUCH! Sorry to hear you had the hand pain, too. Were your hands cold?


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## Our Little Farm

dlskidmore said:


> If you're cold, eat more dairy fat, especially butter.


Coming off of dairy has seemed to really help me not have fibro pain, but yes, this year I seem to be really feeling the cold.


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## dlskidmore

Our Little Farm said:


> Coming off of dairy has seemed to really help me not have fibro pain, but yes, this year I seem to be really feeling the cold.


If you're allergic to the proteins in dairy, you can clarify the butter to use just the fat portion. Melt, whisk with warm water, and let set in the fridge. Pour off the cloudy liquid and use only the fat that rose to the top.


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## jcatblum

Monday I got my official FM diagnosis. Dr agreed GF helps many. He also wants me to use stationary bike & swim. Wish I could get him to understand a stationary bike will not fit anywhere in our place! We used to have one but since moving to the farm it isn't going to happen. The nearest pool is about 40 minutes away so probably not going swim regularly either. 

However right now my biggest concern is my upcoming surgery. I am having the left lobe of my liver removed and the doctor is going to try to take out my left ovary if he can reach it. He said a bout four weeks after the surgery I also need the lower lobe of my left lung removed. I have been seeing doctors for two years a bout what was found as a liver cyst many times Dr. said common cyst don't worry about it. The cyst showed separations two years a go my primary care doctor continued to refer me for other opinions and do the best that she could. Last Monday I actually saw a liver surgeon and his further testing revealed very high tumor markers and also found the nodules on my left lung. Thursday I have a pet scan and Friday morning is my first surgery. I am worried how difficult recovery will be with two major surgeries and the fibromyalgia. Also nervous about the pet scan. 
Anyone else recovered from major surgery while their fibromyalgia symptoms were present?


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## ChristieAcres

I had abdominal surgery, enlarged uterus removed, repairs done, and scar tissue removed from two caesarean sections. Since I was physically fit and eating a good diet going in, that likely helped. I healed very well, faster than normal, and took myself off painkillers after 3 days, and went home. Since I have bad reactions to all pain pills, except Ibuprofin or Tylenol or Advil...that is all I took. No, not fun, but I didn't suffer an increase in FMS symptoms.

Added since I read your post again. Look up T-Tapp online. This is an isometric/calihenic no impact workout made to order for those of us with FMS. Since you only need a DVD, no space needed.

I've ramped up my workouts, doing T-Tapp, and now 35 minutes on my elliptical every other day. I am up to 45 minutes of T-Tapp. Today was a good test. Early in the afternoon, I got bundled up, wearing warm undergarments, warm clothes, and rain pants/jacket w/hood, also gloves. DH and I went out to go mushroom picking in the rain (lightly raining). I picked up line cones mostly, but also found some shrooms. We were out in the wet cold weather for two hours; I hiked a few miles. Afterward, we got home, and I walked into a warm dry atmosphere, felt great.

So, diet, exercise, dressing warm, and our home with dry atmosphere, kept in the 70s (wood stove), all has contributed to me functioning higher physically and feeling good. What aches and pains I do get, I consider very maneagable without meds. I am so glad!!!


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## jcatblum

Lori I asked if I could do the elliptical--- dr said no. I think it is a low impact. I have used an elliptical for yrs & DH has a degree in PE & said he thinks it will be fine. Maybe the Dr has never been on an elliptical. For me it is much easier on my knees than swimming or a bike. 
Will be at least 3 months before I will exercise after my liver resection so I have plenty of time to look at lots of options.


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## CageFreeFamily

I have seen mention of T-Tapp before and am interested in this. Can you tell me more about your experience with it? How was it when you first started? How long have you been doing it? Which DVD do you recommend starting with?

I definitely have some thyroid dysfunction going on and am interested in the T-tapp for thyroid video as well. It says that it can be used as an introduction to T-tapp, but with so little knowledge about it I'm not sure it that would be a good one to get if I only buy one video.

Thanks! :bandwagon:


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## ChristieAcres

jcatblum said:


> Lori I asked if I could do the elliptical--- dr said no. I think it is a low impact. I have used an elliptical for yrs & DH has a degree in PE & said he thinks it will be fine. Maybe the Dr has never been on an elliptical. For me it is much easier on my knees than swimming or a bike.
> Will be at least 3 months before I will exercise after my liver resection so I have plenty of time to look at lots of options.


T-Tapp is no impact and requires zero equipment, since lack of space is an issue. Obviously the Dr is unfamiliar with the elliptical. Post surgery is a totally different matter, however. Once you are cleared to exercise, then there are plenty of choices.

I prefer T-Tapp for the results I get. These include increased core strength, spine alignment, excellent posture, and toning head to toe. I use the elliptical to keep me in shape and be able to hike whenever I want.


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## Caitedid

So I applied for health insurance the other day, as we are looking to start a family next year. Base price was $334/month. When they saw the fibro on my sheet the quote came back as $776/month instead. Agent actually told me to find another company to refuse me coverage so I can get insurance under the Affordable Care Act. Now I'm supposed to make a list of everything that has even possibly gone wrong with me in the last 10 years and a list of every med prescribed, whether I take it or not, so I'll have the best chance of getting denied. What a racket!


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## CageFreeFamily

There is a very interesting discussion on the origins of FM going on here. I just wanted to share. A lot of research went into it and much of that research is cited and linked through the posts.


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## VA Susan

rainy5 said:


> Caitedid I hope you find your answer but don't get to excited. I have been to so many of those specialist. they have checked so much and still it baffles them. one minute my test for von wildebrands comes back and then they run another and it negative. MY lymph nodes will sell and test will come back bad and then they will be fine. I have seen doctors at the eastern seaboards best you can get. I have been checked for cancer, lupus, tuleremia, lymph node biopsies, lyme, celiac, syrodjen's and many more strange illnesses I have never heard of that are rare. I have seen a infectious disease specialist that ran some weird test. My husband and I have a really good friend who is a trauma doctor that lead all this to find out why I went from a healthy person to being so sick. He is like a brother to me and has tried to make sure I don't have cancer of any kind. I have some of the best hospitals in our area. John hopkins, jefferson, hup, mayo etc. I have had 12 tubes of blood taken at once. I bruise horrifically. Like someone beats me. I have spend more time at the hospitals for a couple years that I just gave up. I now don't go even for small things cause I got so tired of getting the I don't know but it's not normal and one day whatever is causing all this will rear it's ugly head. They have some pieces to the puzzles but not the whole picture yet. I hope you get your answer. just don't get to excited to have an answer and a cure. I have had that let down many times. I say that with the best intentions. The bruising can be really bad for no reason. Sometimes my hip would hurt for no reasons and then it would be black and blue the next day. Then my son would climb on my lap to read to him and hit my eyebrow Lightly and I would have shiner within ten minutes. My skin would be tender and sensitive. I have learned to keep myself warm all year round and I bruise less and vitamin b complex helps. Honestly I have been to hell and back.


Rainy5,
I started reading this thread tonight and came on your post. Don't know if you found out what was wrong since writing this post but this is exactly what happened to me before I was diagnosed with Sarcoidosis in 1987 at age 30. my elbows were bruised as well as my ankles. My ankles swelled up like an elephant and I have skinny ankles usually. My ankles were so bruised that they looked like someone hit me with a baseball bat. After a month or so of going to the doctor and getting worse each week, I got some purple lumps on my shins which finally gave a clue to the doctor that is was something like rheumatic fever. I had severe arthritis that affected my knees the most until I could not walk without a lot of pain. They did a chest X-ray and it was abnormal. My lymph in my chest was swollen as well as my spleen. I was referred to another excellent doctor who diagnosed it. I recovered and went into remission but had a relapse at age 42. I'm in remission again. I praise God for his healing mercies!


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## jcatblum

My surgery was postponed until the 28th, so I have spent the past wk making sure I haven't forgotten anything. 
I was shocked that I shopped for some additional term life insurance & prices were double just because fibromyalgia. I already have a good policy but was looking to add additional coverage. I would have never thought that fibromyalgia would have affected life insurance rates. Understand it influencing medical insurance but really???


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## Caitedid

Feeling even more motivated to work on finding ways to deal with the fibro naturally. Fiance and I are talking about working on starting a family after the wedding next spring. After talking to the pharmacist it turns out that NONE of my meds are safe during pregnancy. Guess I'll be starting swimming, spending more time with the heating pad, and checking out the accupuncturist in town.


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## dlskidmore

If you're on the newer antidepressant/anti seizure meds, talk to your doctor about getting off them gradually. Cutting those out suddenly can be bad for you too. My doctor proscribed them, but I refused to start on them. Too many side effects for me. That's one of the things that drove me to start doing more of my own research and self-care.


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## nduetime

I am still dealing with post concussion issues. i will be glad when I am fully recovered. I am however, very thankful everything has turned out so well. I just found out that the lack of motivation is also from the concussion. I am glad to know that because I could not understand why I had so many thoughts on getting stuff done and then no enrgey or motivation to do it. I thought it was the fibro and chronic fatigue rearing their ugly heads. Good to know that there may be an end in sight.

Hey! By the way. Been trying to eat a little more dairy fat and it is helping me stay warmer. Thanks for the tip! I have still managed to lost 20 pounds so far and I am still going. Yippee! 

I find myself trying to avoid negativityat all costs. Whether it be here, on facebook, on the news, tv shos, books, paper, etc. I just feel like I cannot take anymore. It wears me down and out. mkaes me tired and depressed. then I dwell on things I really cannot do much of anything about. So I avoid it. Not very adult maybe but it seems to be working for the time being. Dont get me wrong, I deal with what I have to, just not with what I canot control anyway. For now anyway. What do you folks do about negativity?


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## dlskidmore

nduetime said:


> I find myself trying to avoid negativityat all costs. Whether it be here, on facebook, on the news, tv shos, books, paper, etc. I just feel like I cannot take anymore. It wears me down and out. mkaes me tired and depressed. then I dwell on things I really cannot do much of anything about. So I avoid it. Not very adult maybe but it seems to be working for the time being. Dont get me wrong, I deal with what I have to, just not with what I canot control anyway. For now anyway. What do you folks do about negativity?


We live in a world of information overload. If we let ourselves, we get impacted not only by our own tragedies, and those of our loved ones and neighbors, but of everyone everywhere. When there's something you can do for someone, do it, but when trying to care about the whole world starts to bring you down, shrink your world a bit. Focus on the blessings closer to you. There is plenty enough stimulation in the world close to you when you look for it, no need to get overwhelmed by stuff online or on TV.


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## VA Susan

Jaclynne said:


> Caitedid - I've been having some issues with my left hand, it feels like my two middle fingers are drawing into my palm. I catch myself straightening it out with my right hand or flattening it on a tabletop. Its painful and wakes me up too. I've taken to sleeping with my hand flat on a pillow so I don't curl it up. The pillow deal keeps the hand under the warm covers too, since cold makes it worse.
> 
> I look like Napoleon at the computer, with my hand tucked in or under my warm shirt. I tried gloves, but I can't stand anything at my wrists.
> 
> I've had carpal tunnel surgeries or both hands, but have no issues with the right hand now. Maybe its just arthritis.
> 
> Jackie


Hi Jaclynne,
It may be something else, but it sounds like "trigger finger". I have it too. I woke up one morning with my fingers curled on my right hand and when I straightened out my fingers, my ring finger was stuck in that position. It hurt. I moved it then it popped and straightened. It is tendonitis. I went to the doctor for it and got a cortisone shot in the palm of my hand. He said it is scar tissue in the sheath of the tendon and it catches on it and hurts. It rarely pops since the shot but still hurts but not as much. My left ring finger got "trigger finger" too but I haven't gotten another shot yet. Other things I read said to use advil or anti inflammatories and not use the hand for two weeks! I clean houses so that is not a realistic option. My left palm hurts a lot at times. I think I might have done better if I'd taken the advil earlier. The shot did make a difference but the doctor said the cortisone shot sometimes resolves the problem for good. I can only take two advils a day since more cause me to have stomach problems. 

I also have the shoulder thing that feels numb and goes down my arm. The dr told me years back that it was a pinched nerve in my shoulder. It flares up if I pick up something too heavy, then gets better in time if I take some advil and stop using it as much. I try to avoid picking up heavy things like heavy bags of groceries.


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## Jaclynne

Susan - I didn't realize it but I've not had any trouble with the drawing lately. I think changing my diet has been a great help for the inflamation. I do still have a lot of pain in those fingers though.

I've had the cortizone shots before the surgery, they helped for about 2 days.

Jackie


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## VA Susan

Jaclynne said:


> Susan - I didn't realize it but I've not had any trouble with the drawing lately. I think changing my diet has been a great help for the inflamation. I do still have a lot of pain in those fingers though.
> 
> I've had the cortizone shots before the surgery, they helped for about 2 days.
> 
> Jackie


That's great, Jackie but sorry there is still pain. I went back a few pages to see what kind of diet you are on. Hope it keeps helping. I may need to change my diet too.


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## Caitedid

Do any of the rest of you get the itching? Not sure why I'm flaring so badly the last few days, but flat out exhausted, sore, and _ITCHY_!!! No actual rash or anything, just little moving spots of wanting to rip my skin off. The worst part is when it feels like it is inside your body and not just the skin itching.


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## ChristieAcres

Caitedid said:


> Do any of the rest of you get the itching? Not sure why I'm flaring so badly the last few days, but flat out exhausted, sore, and _ITCHY_!!! No actual rash or anything, just little moving spots of wanting to rip my skin off. The worst part is when it feels like it is inside your body and not just the skin itching.


What kind of diet? Since I went Paleo, Gluten free, a lot of symptoms vanished. That said, we are all unique having different triggers. I used to experience that odd itching.


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## dlskidmore

lorichristie said:


> What kind of diet? Since I went Paleo, Gluten free, a lot of symptoms vanished. That said, we are all unique having different triggers. I used to experience that odd itching.


That and use moisturizer. Any fat/oil is good on the outside. One way to use up veggie oil if you switch to the Paleo diet is to use it for cosmetics.

I like to use A&D ointment. It does have an odor, and is a bit greasy, but it does a very good job of relieving the itch.


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## Caitedid

It's not so much like my skin itches, but like the muscle underneath my skin itches.


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## ChristieAcres

Caitedid said:


> It's not so much like my skin itches, but like the muscle underneath my skin itches.


That is why I asked about your diet. When mine changed, that itching sensation vanished.

On moisturizers, which sink in, I use my own homemade Comfrey Salve, which is completely organic. Getting ready to make more!


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## Caitedid

Ok, honest truth, I eat terribly! Way too much sugar, caffeine, and carbs in general. Starting to log my eating again, with hopes that it'll help keep me honest. Both of my parents have been diagnosed with Type 2 Diabetes recently, and I'd really rather not go down that road.


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## countrysunshine

I have been having such severe pain in my hips and lower back that I looked back at this thread again for the diet recommendation. I am not overweight. I still fall in my recommended weight range. My BMI has climbed to 24 in my 40s after years of being 21.5 or less.

My problem with the Paleo diet is I would starve if I didn't die of boredom first! It would be a lot of work because I would have to cook something else for my husband and not eat it. And, I just don't eat so many things listed. I don't eat fish of any kind, ever. The thought of eggs in olive oil literally turned my stomach. I don't eat pears, blueberries, apricots, cooked greens of any type or beets.

I am 48 years old and at this point in my life I am not going to eat things that make me sick to my stomach (FISH!!!) and I doubt that I will ever develop a tolerance let alone a fondness for those foods I don't eat.

I suppose I am mainly venting. Funny thing is my family thinks I eat way to many off the way things. I was raised strictly meat, potatoes, corn, green beans, peaches, apples, pears (which I have never liked).

I hate to reduce food to medication! Thanks for "listening" to me.


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## ChristieAcres

Caitedid said:


> Ok, honest truth, I eat terribly! Way too much sugar, caffeine, and carbs in general. Starting to log my eating again, with hopes that it'll help keep me honest. Both of my parents have been diagnosed with Type 2 Diabetes recently, and I'd really rather not go down that road.


It is very difficult, just at first, to get in the mindset to go Paleo, but it helps an incredible amount and many report diabetes being reversed.

I just got rid of everything I couldn't have in the diet in my home, pantry, fridges, and freezers. Then, I stocked up on everything I could have. It made it much easier and I didn't have to :duel: with myself. Since I am very strict with my diet, I can cheat occasionally. I am far more discriminating now when I do cheat!

It made an incredible difference in my symptoms!


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## ChristieAcres

countrysunshine said:


> I have been having such severe pain in my hips and lower back that I looked back at this thread again for the diet recommendation. I am not overweight. I still fall in my recommended weight range. My BMI has climbed to 24 in my 40s after years of being 21.5 or less.
> 
> My problem with the Paleo diet is I would starve if I didn't die of boredom first! It would be a lot of work because I would have to cook something else for my husband and not eat it. And, I just don't eat so many things listed. I don't eat fish of any kind, ever. The thought of eggs in olive oil literally turned my stomach. I don't eat pears, blueberries, apricots, cooked greens of any type or beets.
> 
> I am 48 years old and at this point in my life I am not going to eat things that make me sick to my stomach (FISH!!!) and I doubt that I will ever develop a tolerance let alone a fondness for those foods I don't eat.
> 
> I suppose I am mainly venting. Funny thing is my family thinks I eat way to many off the way things. I was raised strictly meat, potatoes, corn, green beans, peaches, apples, pears (which I have never liked).
> 
> I hate to reduce food to medication! Thanks for "listening" to me.


I was raised on much the same diet you posted you eat, and I found that boring, eating the same things all the time. A Paleo Lifestyle Diet is incredibly diverse, and I enjoy eating a wide variety of foods! I eat all kinds of fish, crab, shrimp, oysters, and oysters. I also eat beef, pork, chicken, and venison. I am probably leaving out meats, but eat almost all. As for fruits/veggies, hardly any I don't like. As for cooking? You could always juice your fruits/veggies then heat the juice, make soup stock out of it... Drink it out of the juicer if you can tolerate it. Then there are all the nuts and seeds. For cooking oil? Coconut and Pork Lard (mine). I don't use Olive Oil to cook with only for salad dressings.


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## countrysunshine

I eat far more things than how I was raised. That is why I was saying that my family thinks I eat a lot of odd things.

I think mostly I was overwhelmed by what I was reading. There were so many red flags for me. I cannot stand anything that has coconut oil in it - not even skin care items.

I love breads of all types and potatoes cooked just about any way I can get them. Giving up both would feel like starvation. Yes, I know, I am addicted to carbs!!

Like I said, just venting right now.


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## ChristieAcres

That is why most people have a hard time taking the first step. I just too a radical first step, because I also FLAT LOVED CARBS!

This is why I get to cheat, and feel great, by being so self-disciplined. But was I ever super bad before. So, all the stuff I wasn't supposed to eat is out of my house. I only cheat once every week or two. I do miss bread, but feeling great is worth it to me. It isn't so simple for others, however, as not everyone has the same triggers.


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## Jaclynne

I thought I'd miss bread. Funny thing is, it doesn't even taste good to me now. I leave those fancy yeast rolls untouched when I eat out. I wasn't even tempted by the cheese biscuits at Red Lobster.

When I do cheat it is with chips, either tortilla chips or rice crackers/chips.

The Paleo eating style has made a huge diference in my health. My lungs have cleared, I have a lot less fibro pain, and joint pain from osteo-arthritis has decreased - not gone by any means, but decreased. Type II diabetes is under control w/ no meds. The standard American Diabetes Assoc diet didn't have any effect on my sugar numbers and I followed it closely for about 8 months. I had grandparents on both sides that had lost limbs from diabetes. I was justifibly worried, if paleo hadn't worked so well for me, I'd have been trying something else, but this works.

I juice in the morning (whole food fruits and vegatables w/pulp)and that is great for your skin and hair too.

It is really worth trying, I'd encourage anyone to give it chance.

Jackie


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## ChristieAcres

Good for you, Jaclynne! What I really miss are my homemade rolls and sour dough bread. The rest I don't miss at all. When I cheat, it is rarely ever bread, but a high quality dark chocolate...

Like you, I feel tremendously better and don't consider the Paleo Lifestyle Diet expensive at all. When I think of all the $ spent on junk food, juices, and other beverages... Also, if you are growing your own fruits/veggies, and have a source for seafood (we get it ourselves), it cuts way back on food expense. How are you managing there?


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## dlskidmore

countrysunshine said:


> My problem with the Paleo diet is I would starve if I didn't die of boredom first! It would be a lot of work because I would have to cook something else for my husband and not eat it. And, I just don't eat so many things listed. I don't eat fish of any kind, ever. The thought of eggs in olive oil literally turned my stomach. I don't eat pears, blueberries, apricots, cooked greens of any type or beets.


There are many variants of the Paleo diet, and you can get some benefits from going Paleo without going low carb. If you're not overweight and not diabetic, and not trying to excel in endurance sports, you don't need the low carb component. Try just cutting out the grains (including corn) and vegetable oil, and increase the fatty meats and dairy products. Keep your potatoes for now, they don't cause inflammation, and they don't mess with your leptin hormone, just insulin. Eating potatoes with butter, sour cream, or cheese will help moderate the effects of insulin.

You don't need the fruit or the fish, and cooking with butter or bacon fat is way better than olive oil. (Tallow from a grass fed animal is absolute best, but that's not readily available in your grocery store.) Some versions of the paleo diet even recommend you reduce the fruit.

I don't see why you'd have to cook different for your husband, my hubby absolutely adores our new diet. Who doesn't love beef spaghetti squash Alfredo? (I can use rice flour for the Alfredo sauce to make it Paleo.)

And it's not as expensive as you'd think either. If you look at nutrition labels and prices, the bargain cuts of meat (the ones that include the fat and bones that are good for you) and most all dairy products are cheaper per calorie than most vegetables. High fat foods are dense and filling, and after you grow accustomed to them, you will eat less volume than you did before.

You don't have to add coconut or fish to the diet if you don't want to, just getting rid of grains and vegetable oils will help your Omega 6/Omega 3 ratio immensely. Some of those other things like paying more for grass fed meats/dairy will help even more, but you don't have to take all these steps at once. (Our budget determines how much grass fed meat we get. We get all our grass fed meat as a 1/4 or 1/2 steer share directly from the farmer, the individual cuts are too expensive for me.)


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## Jaclynne

lorichristie said:


> Good for you, Jaclynne! What I really miss are my homemade rolls and sour dough bread. The rest I don't miss at all. When I cheat, it is rarely ever bread, but a high quality dark chocolate...
> 
> Like you, I feel tremendously better and don't consider the Paleo Lifestyle Diet expensive at all. When I think of all the $ spent on junk food, juices, and other beverages... Also, if you are growing your own fruits/veggies, and have a source for seafood (we get it ourselves), it cuts way back on food expense. How are you managing there?


 
Well, I'm only cooking for one now, and much of the meat/fish is still coming from the freezer that we raised/killled/caught ourselves. I don't eat shellfish, so that's not an issue for me.
I do the juice because I don't get enough fruit and vegetable in my diet trying to eat it. And its easier to balance in juice. 
At first I was using a conventional juicer and composting all that pulp. It was quickly getting too expensive and messy. I dreaded juicing. Now I use a Nutru-bullet juicer that blend pulp and all. Saves a lot of money on fruit and veg, fills you up like a meal and isn't messy.

Since I just moved to this house this yr, I'm not all set in the garden dept yet. Working on raised beds and greenhouse for winter greens etc. I only had figs producing fruit when I came here, but I'll get there. Even buying mostly organic food, its still cheaper than eating fast food. And it seems I waste a lot less leftovers etc. Its been hard to learn to cook for one.

Oh, yeah, one thing I do miss is dried beans. I do still eat fresh beans when in season or from the freezer, but I miss a good pot of small reds every once in a while.

Lori, you're garden posts are an inspiration for me, thanks.

Jackie


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## countrysunshine

I most definitely would have to cook seperate for my husband. I do wonder how this diet works (effects) if you don't have a gall bladder. High fat foods tend to trigger some issues.

I also don't eat much that is tomato based because I think I have an allergy to them. At the very least it upsets my digestive system the same way fat does.

I have spent several years trying to control my cholesterol through exercise and diet. Adding fat back really goes against everything I have worked for in the past 10 years.


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## dlskidmore

countrysunshine said:


> I most definitely would have to cook seperate for my husband. I do wonder how this diet works (effects) if you don't have a gall bladder. High fat foods tend to trigger some issues.


He may not be able to eat the low carb version of paleo, but he can still eat the low-inflammatory diet that gets rid of grains and vegetable oils. 

Although some people have succeeded in eating high fat with no gall bladder with some bile supplements. 

Here is a good article someone without a gall bladder wrote about her paleo diet. She can eat low carb, but not the lowest carb version of the diet, and finds it more important to have grass fed meats when buying fattier cuts:
http://paleoparents.com/featured/how-to-enjoy-bacon-without-a-gallbladder/

Try a more restrictive diet, and get him to track his symptoms for six weeks. Then if things improve, re-introduce one food at a time and track symptoms.

It wasn't mentioned in that article, but the liver does still produce bile without a gall bladder, but it trickles in all the time instead of releasing in spurts when needed. Your hubby might try breaking fatty foods up into smaller portions and eating them over a long period of time.



countrysunshine said:


> I also don't eat much that is tomato based because I think I have an allergy to them. At the very least it upsets my digestive system the same way fat does.


Some paleo diets don't allow tomatoes because they are part of the nightshade family and may contain some "anti-nutrients." I love tomatoes too much to give them up...



countrysunshine said:


> I have spent several years trying to control my cholesterol through exercise and diet. Adding fat back really goes against everything I have worked for in the past 10 years.


Well, if it was working for you, I wouldn't suggest changing it. If it wasn't working for you, maybe it wasn't the right approach for you.

If fat upsets your stomach, step back and try different kinds of fat. You may find you don't process them all the same. Also start out in moderation, as it can take the system time to adjust. You might try the bile supplements yourself, but I'd want a diagnosis of the problem before deciding to medicate it.

Some symptoms of switching may be temporary:
http://www.marksdailyapple.com/low-carb-flu


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## ChristieAcres

> Lori, you're garden posts are an inspiration for me, thanks.
> 
> Jackie


Thank you! On that Gardening Thread, I just posted some videos of our recent snow (you just click the links). We rarely get snow here, and not this much, usually! As time allows, I'll be going through the 100s of pics I took this year, to post some on my thread.

Paleo Lifestyle Diets are not one size fits all, as has been pointed out. They can be modified. Ours had to be as there wasn't enough carbs (level of physical activity affects the carb need). I can't go strictly Paleo or I'd be emaciated.


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## Caitedid

Can someone point me toward some good resources for going Paleo? Seems like it's worth a try since it's worked for so many of you.


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## dlskidmore

Caitedid said:


> Can someone point me toward some good resources for going Paleo? Seems like it's worth a try since it's worked for so many of you.


http://perfecthealthdiet.com/the-diet/
http://www.marksdailyapple.com/welcome-to-marks-daily-apple/


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## jcatblum

Still slowly recovering from my liver resection. My fibro didn't seem to bother me for about 6wks. Fibro must have been hiding under the pain medication. 
I ordered T-tapp More DVD & it arrived today. Watched the informational part tonight. Tomorrow I will try the workout. I had tried to do yoga for inflexible people & much of the stretching was to hard on my abdomen. My incision goes from my bra line to my waistline kinda like a C. Today was officially 2 months from my surgery date & it has taken everything I have to get out of bed & walk around the house some days. 
I will report back how the T-tapp DVD works for me the next few wks.


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## dlskidmore

Happened across an interesting article today, not about fibromyalgia per se, but about the link between diet, gut bacteria, and inflammation.

http://www.nytimes.com/2013/02/03/magazine/the-boy-with-a-thorn-in-his-joints.html?_r=0

I'm not convinced that every fibromyalgia patient has gluten sensitivity, but it is a side-effect free thing you can try for yourself, and if it works for you, you can vastly reduce your reliance on pain meds and muscle relaxants. (If you're on the antidepressant or antiseizure meds, consult a doctor before trying to wean yourself off of them, as they can have severe withdrawl effects.)

I'm working on moving. I've spent the last three weeks packing, cleaning, and lifting. I'm a little sore and tired at the end of the day, but I get 8 hours of sleep and can do it again the next day. Used to be that one day like I did yesterday would leave me recovering for a week or two, taking muscle relaxants and 9-10 hours of sleep a night.


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## BeeFree

I just finished reading all the post. I found some interesting things I am going to check out and see if something will help me. I hate taking meds. They have gotten to where they make me sick, and that on top of the FM and everything else that is wrong with me about puts me over. 

I am so happy to find out that I am not the only one experiencing what FM does to you. I have had it since 94, wasn't diagnosed until 96. I have had doctors tell me there is no such thing. I have had so many test that I know the insurance company is not making any money from me. LOL I have had several surgeries. 

Since I found this perhaps I can try the diet that is mentioned, I had never heard of it before, and it will help me. Hugs to all


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## nappy

I haven't read all the posts on the fibro topic...too much to read all at once. Recently on Countyside Families I posted about blood pressure and how the cuff causes me extreme pain. Wouldn't you know, an online search brought me to a fibro board which was the only place that mentioned pain with BP cuff compression. Eleven years ago I had carotid surgery, and at that time I was prescribed a couple meds. Sometime around that time I had ultrasound studies of my leg arteries too. The BP cuffs used at that time on my legs caused terrible pain. The meds that I was taking at that time were Plavix and Lipitor. Lipitor was d/c'd after 7 months because of a skin rash...thank goodness as there were additional problems such as forgeting simple words in the middle of sentences, muscle pain in the legs, fatigue, and 25# weight gain. Plavix was later d/c'd too for other issues. Went to a chiropractor who had me sit in a reclining massage chair with slots for the lower legs. As he turned it on, the chair started squeezing my legs...I screamed "shut that off"! Something to do with compressing the muscles again now with the BP cuff. Anyone else have this happen? Soon I'm going back to the doctor with the BP readings that I am unable to take with the type of cuff they want me to use but still taking the newly prescribed BP meds. My wrist cuff shows a much lower BP but it is more comfortable. Need to be armed with some type of info. In the past I have looked online at fibro but if I do have it, it's not as serious as many of you have it.


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## Ruralnurse

Please try not to take this personally. If you have fibromyalgia it can be misearable and you can be very sensitive to pain. If you have hypertension and can't get your blood pressure under control (because the medications are adjusted in regards to your BP readings) you could have a stroke. Or if you meds are too high you do not get enough oxygen perfusion to your vital organs.

I get that you are saying that getting your BP checked is uncomfortable, even quite painful. But if you think about it being a minute or 2 of even extreme discomfort to evalaute a very serious condition, it may save your life.

It would be like a person with a new diagnosis of diabetes saying they can't tolerate the painful prick of the lancet to check his/her blood glucose or the needle of the insulin injection. Yes it is painful and yes it can save your life.

Good luck,

Ruralnurse


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## Caitedid

So, have been having the worst flare since I was dx'd in 2011. The good part is that I know what it is, and that although it hurts, it cannot HURT me. I feel much more able to take a long nap, a hot shower, slam a cup of coffee, and get back to it.

OTOH, went off my meds because none of them are safe to take while pregnant. DF and I won't be trying officially til August, but we're not trying _super_ hard not to. I want to be sure that they're all completely out of my system, and that I can handle the time without them. It's also not safe to take them while breastfeeding, and I think that the benefits of breastfeeding outweigh the risks of not taking my meds. Any advice on natural, baby-safe options?

Have also started eating much better, cutting out (almost) all the caffeine and sugar. Have lost 23 of 80# so far!


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## Caitedid

Also, polite way to deal with the friend who keeps telling me how to treat my fibro? She says she has fibro, but has never even tried to be dx'd or treated in any way. She keeps telling me to suck it up, and I kinda want to tell her to stick it where the sun don't shine. She has good intentions, but she's one of those that isn't happy with her own life so has to go looking for trouble in other peoples'. Thanks!


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## dlskidmore

There have been a number of discussions about diet and exercise here, which are drug free ways of reducing inflammation and helping the body heal itself. If you're concerned about a strict elimination diet during pregnancy, there are several resources for paleo pregnancy and weston A price diet pregnancy. I think Paleo is better than Weston A Price for fibromyalgia, but Weston A Price has really good young family support. On the exercise front, try a yoga for pregnancy book/video/class. They will teach you exercises that you can keep doing throughout pregnancy and will ease childbirth. Yoga is very gentle and good for fibromyalgia. Take it slowly at first, listen to your body and don't overdo it. Just because a healthy person can do a 30 minute first lesson doesn't mean it's appropriate for you to do it all in the first lesson.

My friend with several children says since going Paleo his wife has found pregnancy much more comfortable. She had less morning sickness and more strength and energy.


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## dlskidmore

Caitedid said:


> She keeps telling me to suck it up, and I kinda want to tell her to stick it where the sun don't shine.


I'm going to say something really unpopular: Sometimes sucking it up does help.

Although it got to the point with me where I'd come to bed with cuts and bruises that I didn't remember getting, and injuries usually persisted for a week before I got medical attention, I was just so used to ignoring pain. I chose to do that because if I laid down every time I felt badly, I got worse, and I stayed laying down for a week or two. I stayed away from support groups, as they were filled with folk that did stay laying down all the time, which I was not going to give in to.

Getting enough rest and good food on a schedule that works for you is very important, increasing activity slowly enough for your body to adapt is very important, don't ever let "sucking it up" get in the way of that, but sometimes "sucking it up" keeps your pain from getting in the way of your own healing.

I made my major changes that really started helping me heal when just sucking it up and pills didn't work well enough any more.

And yes, I had a real diagnosis from a real pediatric rheumatologist, and was on the prescriptions for 15 years. Nowadays I'm doing so much better I'm trying to switch from "suck it up" to "listen to your body" so I can find the remaining stressors that bother my fibromyalgia and eliminate them, but I had to get rid of the cloud of pain first.

As for your ever so helpful neighbor, you might explain that sucking it up only helps so much, and your case is a little worse than hers, or you might write it off as a lost cause and make some pacifying statement like "I'll try harder, but I need a little help right now."


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## Caitedid

Guess I need to clarify that when she tells me to suck it up she's apparently forgotten that I: milk cows 40+ hours a week, farm with the fiance, keep house, am planning a wedding, and am going to the gym 4-5 days a week. I also have serious chronic back problems, and most of the trouble I'm in health-wise is from spending too many years sucking it up, trying to keep up with men ten years younger than me, and never taking care of myself until it was too late. It's a hard habit to break.


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## dlskidmore

Yep, you're doing more than your share of sucking it up then.


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## ChristieAcres

Caitedid said:


> Also, polite way to deal with the friend who keeps telling me how to treat my fibro? She says she has fibro, but has never even tried to be dx'd or treated in any way. She keeps telling me to suck it up, and I kinda want to tell her to stick it where the sun don't shine. She has good intentions, but she's one of those that isn't happy with her own life so has to go looking for trouble in other peoples'. Thanks!


Sorry to hear that, doesn't sound like much of a friend :flame: All of mine are compassionate, supportive, and one is a Massage Therapist (I barter for massages). "Love must be tough," is my motto big time BTW. I'd tell her straight, not tolerate any more non-supportive comments or actions. If there repeats? See ya! Life is too short...

I invest myself into friendships with others who mutually choose to do the same, have mutual respect, trust, and loyalty. My best friend is almost done earning her pHD, is currently a Counseler, with a Master's in Psychology. We have been friends for 22 years :rock: This was prior to my FMS diagnosis!


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## mountainwmn

I find it easier not to discuss my health with my friends at all. Unless you have been through it, you don't understand. And if she is telling you to suck it up with everything you are doing, then she hasn't been through it. 
I've been having stomach problems the last year, I'm down to 102lbs, and the mirror tells me I look like a crack addict. When everyone started telling me how great I looked and asking for my secret I snapped. So I just let everyone think all is well, there's nothing wrong with me, and I like being able to count my bones.


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## paul98604

I've read a lot of the posts on here and I want to say I'm amazed at all of you for pushing through all the pain and frustration of fibro. My mother (70yrs old) has been diagnosed with it and a friend of mine (46yrs old) as well. Seeing my mother in pain like that is really frustrating. Ever since she was diagnosed I have been asking questions to anyone I know who has fibro. It seems to me that everyone I talk to are on or have been on some sort of antidepressant medication. I'm just wondering if there's some correlation to the anti depressant prescription drugs.


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## dlskidmore

A) Pain causes depression. It's hard to be cheery when you can't do the things you used to do or the things your friends can, and on my really bad days I'm downright cranky. The fibromyalgia diagnosis isn't followed by any cures from the doctors, so if your current treatment (aka symptom suppression) leaves you still in pain or with serious side effects, it can be hard to have hope for the future. 

B) Any chronic stress makes fibromyalgia worse, physical, mental, or spiritual. Depression can be your primary stressor, or it can be part of the vicious cycle where the pain makes you depressed, so your body is more stressed and the symptoms worsen.


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## paul98604

I understand the pain causs depression and that any emotional upset makes it worse. What I am trying to figure out is how many people were on anti-depression meds _before_ the symptoms of fibro started..could they be a trigger or a cause of the problem.


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## ChristieAcres

paul98604 said:


> I understand the pain causs depression and that any emotional upset makes it worse. What I am trying to figure out is how many people were on anti-depression meds _before_ the symptoms of fibro started..could they be a trigger or a cause of the problem.


I wasn't on meds before FMS, only took them a few months afterward.. I haven't been on any anti-depressants since. No, I don't sufferer from depression.

Being incredibly healthy for 24 years of my life, then going through a year with a very sick baby, sleep deprivation, and stress... That took a toll on my immune system. It was following that year, I awoke with FMS one morning. This hasn't been pleasant, but I consider myself very blessed to be able to choose to be drug free. Other associated conditions can take away that choice. There are a number here with serious health issues requiring medical treatment. 

I have had FMS for 22 years now.


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## paul98604

I'm sorry to hear that anyone has to go through this. I commend all of you on here for your courage and fortitude in dealing with this issue. I watch my mother suffer from it and a couple of her friends and although I've never experienced it first hand I can sympathize to a point. The anti depressant meds were just a theory I personally had. I was just hoping to find a correlation with something that may help others in the future.


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## nduetime

Good idea paul98604 but i am pretty sure it does not correlate. I, and most of the fibro sufferers i know personally, either have had fibro for way longer than they have been on anti-depressants or are trying to do without them. I can see where someone would lean that way though as many folks with chronic pain are taking them.

keep trying....somebody, someday will find something. &#9829;


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## dlskidmore

I was watching [ame="http://www.youtube.com/watch?v=iZctVYxiW2w"]this video[/ame] about statins (cholesterol lowering drugs), and some of the symptoms of the side effects of statins sound like fibromyalgia. Folks that are on statins might want to look into it.


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## BeeFree

Some of my meds have been making me sick to my stomach and causing me to itch. I gradually stopped my Wellbutrin. Still had itching, and stomach sickly. But since I was off of them decided that was good. I went for 2 months without them and started hurting more and barely able to get around. I thought well perhaps they were helping more than I thought, so I started them again and within 2 weeks I was back to the way I had been before. I decided it was a stomach pill that was making me ill, so I stopped that and that has seemed to work. For the itching, I have stopped my iron and and another vitamin, but still am itching. My face is breaking out really bad too. Supposed to go for an upper and lower GI this month. Sure hope they can figure out what else is wrong.


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## [email protected]

Fibromyalgia and muscle spasms? Does anyone get sudden severe muscle spasms? I mean jerking arms, legs, and hands? I am dropping, spilling, and breaking things due to them. The other day one hit as I was going down the basement stairs, I am very bruised and sore but thankfully not worse than that. I was diagnosed with fibro about 15 years ago. The spasms started a year or two ago and are getting worse. Internet searches of my symptoms keep bringing up MS. I am going to talk to my Dr. At my next visit. If it is part of the fibro what do you do? I have a prescription for a muscle relaxer but these spasms come out of nowhere and I don't want to take the med constantly.


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## calliemoonbeam

HH, I have spasms something awful, and all over my body, not just arms and legs. I even get them in my neck and jaw sometimes. They're nothing like charley horses, and no one seems to understand just how bad they are and that they leave the muscles sore for days afterwards. I've been having them for years, and they just keep getting worse. I started out on a low dose of Flexeril and now I'm up to a higher dose of it for the milder ones and a pretty high dose of Valium for the worst ones. 

I HATE having to take so much medication for them, but have no choice. Sometimes just slightly twisting in one direction will set them off in my back or abdominal muscles, I just never know what will trigger them. The really bad part is the Flexeril works in 10 minutes exactly (I can time it, lol), but the Valium takes about 30 minutes, and when I'm having the really bad spasms 30 minutes seems like days! Then there's the grogginess that lasts for hours afterwards and the dry mouth that lasts for a couple of days from the meds.

I've searched the internet for hours and hours many times and have never really found much on FM and severe muscle spasms. Apparently, it's a pretty uncommon side effect, though my doctor says she has several patients who have them. 

Before I started the meds, hot showers and heating pads were the only things I found even slightly helpful. I'm really sorry you're having them and pray you find relief and that they don't get worse. I wouldn't wish them on my worst enemy!

Bee, if you're taking any kind of narcotic medications, they can cause constant itching, and so can liver problems. You say you have stomach problems, so a liver panel might not hurt. Good luck!


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## dlskidmore

Some of the latest research shows that fibromyalgia patients have a deficiency in their ability to control blood flow to the skin, and therefore have trouble regulating body temperature. My average temp is closer to 96.8 than 98.6, and I question if I have a fever when the thermometer reads 98.4. Is this just me or is this common with fibromyalgia because of the temperature regulation issues?


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## hickerbillywife

There is a product called Reliv that helped my sister with severe fibro. It is a nutritional shake. Yes it is pricey and yes you have to take it for a few months before you see results. The results for her were amazing. Just thought I'd mention it in hopes of helping someone get some relief.


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## dlskidmore

The vitamins could be helpful, but I'd rather see it soy free.


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## notwyse

Ibuprofen can cause intense itching. Both generalized or localized itching. I quit taking it and the itch which had been a constant for two years quit overnight. Bingo.


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## jwal10

I see this thread kind of died. We all got busy I guess. Do you all get tired of talking about it? 

Sweetie update. Her Mother was in the hospital in Feb, then to a double room as she was not able to be in her apartment. Not good, she was so confused. We tried to get her into Memory Care right off but you know doctors, care facilities and Medicare. She has a tiny room of her own now, in Memory Care. Her mind is slipping fast, she is scared and confused. All the moving out, to storage, and now to Memory care, has been a strain on Sweetie but this last 2 weeks has been a blessing as she knows Mom is being well cared for now. We were able to go to the beach cabin for a few days, very nice weather. Still have to go through and box up what Sweetie wants to keep from the storage unit, then disperse the rest to family. Sweetie does not drive anymore. Got her new glasses, seems to help her eye strain/headaches. We seem to have her meds working better. Get her on them sooner, stay ahead of the lag time. She was doing better before her Moms hospital stay, so hope that comes back now that Mom is settled. It is tough for Sweetie to let someone else do what she feels is her responsibility but it must be done. We see Mom every other day unless she has a real bad day. Other than the bad brain fog, Sweeties health is as good or better than 2 years ago. She does less but can enjoy life more....James


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## backwoods

I came to this discussion to try to gain some insight. Recently, I was involved in a situation where someone volunteered to take on the planning of an important social event, which involved her own child, and thirty something other kids. I volunteered to assist her with the arrangements, as my own kids were also going to this event. From the beginning, she made ALL decisions, for dÃ©cor, theme, menu, venue, etc, completely on her own, without allowing or seeking input from any of the others involved. The others I speak of, are the parents who were tasked with helping pull this shindig off, by way of supplying the food, drinks, the decorations, and paying for the tickets for their children to attend. The "group" was to pay for some of the food, plates, cups, napkins, and the venue, out of the ticket sales. The lady in charge couldn't or wouldn't give running numbers on how many tickets had been sold, no one had any idea how many kids/food/table decorations to plan for. The plates, cutlery, cups, napkins hadn't been purchased, and it was 3 days before the event! The woman had done none of the things she said she was going to do, and had none of the supplies, she said earlier she already owned, when she was insisting on the colors and theme. She was repeatedly asked if she had this or that, and how many tickets are sold already, to which she always gave evasive answers. The rest of the parents involved had 3 days to put together a formal event, that should've been done over 3 months. The lady didn't do much of anything to help set up, or clean up, for the event. Her excuse she gave for it was that she has fibro. So I'm thinking, for the last 3 months, you haven't been able to do any of this? And if that's true, WHY wouldn't she tell someone in the group so that another person could take it on? She nearly ruined a very important event for our kids. We did manage to pull it off, but it was incredibly difficult and more costly as a result. Do YOU think it sounds like she's got a legit excuse? Please, educate me. I don't want to be thinking badly of anyone who has a legit illness. I know that during this 3 month period, she was out shopping, visiting friends, etc. I offered to help repeatedly, and when I voiced concerns about anything, she told me to "relax, I've GOT this!"


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## dlskidmore

It is hard to admit when your disease is holding you back. You might not realize that the stress of planning the big event is going to trigger a flare-up, and then the pressure of getting it all done on time makes the flare-up worse. She may have thought she'd have some better days and be able to play catch-up. But she should have known when to give up and ask for help. When I was on the line to make a wedding dress and had a flare-up I told the bride and her mother to come out and do the cutting for me. (The fabric was a thick velvet and took hand strength to cut.) I can see how this happened, but you also have a legitimate beef that she made a mistake in not asking for help.


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## dlskidmore

Please also understand that there can be cognitive impairments during a flare-up. Pain messes with the brain and we don't always think clearly during a flare-up.


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## backwoods

Thanks for the info dlskidmore! She almost reminded me of my mom who had alzheimer's on the actual day of the party. She seemed disconnected, almost like she wasn't really even hearing me. Kind of like, the light was on, but nobody's home. Thanks for trying to help me understand. I sure feel for those of you with this!


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## dlskidmore

Some people call it fibro-fog.


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## dlskidmore

I'm at my worst at parties. My hypersensitivity extends to noises, lights, and crowds. I attended many church services from the library before I found the quiet little place I go to now.


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## dlskidmore

FYI, I am starting to think I might get a full workup by an endocrinologist. There is significant overlap between adrenal insufficiency and fibromyalgia, and I may have been misdiagnosed 20 years ago... 

The real bad thing is "adrenal crisis". If adrenal crisis is the correct diagnosis for my severe dizzy spells, then I've cheated death a half dozen times and never even been tested for the real cause. I recovered on my own in about the time it took for medical professionals to come get me and transport me to the nurse's station/hospital, and nothing further was thought of it. One doc said I had low blood pressure, another said migraines. Two staff (camp/school) nurses let me go home in a family member's care with no treatment. A couple other incidents happened with no medical supervision because I was tired of paying for professional help and not getting any.


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## Whisperwindkat

dlskidmore said:


> FYI, I am starting to think I might get a full workup by an endocrinologist. There is significant overlap between adrenal insufficiency and fibromyalgia, and I may have been misdiagnosed 20 years ago...
> 
> The real bad thing is "adrenal crisis". If adrenal crisis is the correct diagnosis for my severe dizzy spells, then I've cheated death a half dozen times and never even been tested for the real cause. I recovered on my own in about the time it took for medical professionals to come get me and transport me to the nurse's station/hospital, and nothing further was thought of it. One doc said I had low blood pressure, another said migraines. Two staff (camp/school) nurses let me go home in a family member's care with no treatment. A couple other incidents happened with no medical supervision because I was tired of paying for professional help and not getting any.


 Just to forewarn you and endo may be the worst doctor you can go to. Most of them are diabetes doctors and they don't know much about much else. They also tend to not believe in adrenal fatigue. If you ask about thyroid most of them are TSH only doctors. yes, you very probably were misdiagnosed. Would highly suggest, saving up your money and working with a functional medical practitioner. They tend to be private pay. Some are more reasonably priced than others. I have fired more endos than I care to count. Also, you can still read many of Dr. John Lowe's articles online. He was a fibromyalgia doctor that realized most of his patients were actually suffering from undiagnosed thyroid disease. Their lives greatly improved once their thyroid levels were optimized. You need a doctor who will understand this. Thyroid problems lead to adrenal problems. I have fought this battle for over 10 years and been diagnosed with everything imaginable including fibro and chronic fatigue. Funny thing is I only have fibro or CFS symptoms when my thyroid is off. My true problem is Hashimoto's thyroiditis. Not saying fibro isn't real, but makes you wonder how many people have been wrongly diagnosed because doctors just don't want to deal with them anymore. I know that is why I was diagnosed with fibro and CFS, my PCP got tired of me asking him to check my thyroid. Just my 2 cents. Blessings, Kat


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## dlskidmore

I've been convinced for years that fibro is an outer experession of a chronic stress, but I don't know if that stress is the same for everyone. There are too many odd treatments that work for a percentage of us. 

The endo I'm looking at claims to be an expert in fibromyalgia and dabbles in some alternative medicine (some of which i respect more than others. ) She was recommended to me as a primary physician before i started putting endo clues together.


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## badlander

I am surprised by the number of members who are suffering from FM and functioning as homesteaders, wifes, mothers, husbands, etc.

I have a form of FM caused by my Lyme disease and was changed physicians recently. My old doc was the one who treated me originally for my Lyme and was on the conservative side with my treatment. The new doc took one look at my chart, talked to me and basically said 'we have to get that pain under better control for you' He increased all of my pain meds, reassured me that I would still be able to function. I could have hugged him.

This last week has been fantastic. Only minimal pain that is easily ignored.

Yes, I get the 'gee you don't look sick' response from people but my husband knows how badly I suffer at times from the pain. 

I also hear people say when I tell them I've had Lyme 'gee, that's bad stuff'. But seriously they do not know what a Lyme sufferer goes through when they are in a flair. Nor do they realize the importance of protecting themselves from tick bites.

Question for you all. How many of you have been tested for Lyme as FB is one of the side effects of the infection and many FB sufferers are really old Lyme victims.


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## dlskidmore

I never tested for lyme. I did get a bite decades after fibromyalgia diagnosis and got the antibiotic for lyme. I've heard that Chronic lyme is highly controversial, and the treatment is mostly symptom management.


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## badlander

IMHO it is not as controversial as it once was as I recently read an article that talked about chronic Lyme as being connected to an autoimmune response to the bacteria, similar to the autoimmune response to beta hemolytic streptococcus in rheumatic fever which I have also had.

I found this article in the Huff Post that pretty well explains what I am trying to say:

*Your Symptoms Are Real Even If Your Doctor Can't See Them*
So if ticks are dumping their garbage into our bloodstream, causing various symptoms and organ damage, imagine how difficult it might be to get accurate diagnosis. Go to your physician, and you'll likely be diagnosed with depression, chronic fatigue syndrome (CFS or Myalgic Encephalomyelitis), fibromyalgia, an autoimmune disease such as rheumatoid arthritis or multiple sclerosis, ALS, Parkinson's disease or others. Worst of all, you could be told it's all in your head. In one sense that's true, Lyme definitely penetrates brain tissue! The consequences of misdiagnosis are lifelong because you will end up buying prescription drugs and supplements for a disease you don't have, and you'll probably never find complete relief. My article will inform and stun you all at once, "Long History of Pain? Think Chronic Lyme."
Conventional blood tests from regular labs are highly unreliable for Lyme. So are blood tests associated with other tick-borne infections such as Bartonella (cat scratch disease) and Babesiosis (a malarial type illness that causes day sweats, night sweats, chills, air hunger and an unexplained cough). _How can you figure this out if blood tests are iffy? _


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## calliemoonbeam

I was tested several times before I was first diagnosed with fibro in 2001, and I didn't have Lyme. I have had it twice since then though, in 2010 and again in 2011. Luckily, I was treated promptly, but I've never quite gotten back to where I was before that. 

You mentioned being surprised there were so many of us with it here. I've noticed that it seems like the stronger, more physically active people tend to be the ones who get fibro. I mentioned this to my doctor, and she said she'd never thought about it like that, but she agreed with me, that virtually all of her patients had been the extra-strong, do everything, work hard types. She brought it up at one her seminars, and all the doctors tended to agree with that theory, but didn't have a concrete reason for it. I still haven't seen any reasoning behind it, but from what the posters here have said, it does ring true, whatever the reason.

From the stories told here and lots of discussions we've had in the past, I think most of us went through a really bad period initially where we couldn't do much of anything, but then with meds and familiarity we began to adjust. We learned to work smarter, not harder and to know our limitations and work around those. 

I know I personally feel worse if I sit around doing nothing. Physical activity helps...as long as I don't push it too far, and I can only work in short bursts with lots of breaks. There's a fine line there, and each person has to learn where their line is. Living this lifestyle makes us happy too, so I think that's why we push at it instead of just giving up. Just my two cents.


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## dlskidmore

I think fibromyalgia is a poor response to stress and some of us just can't help but pile on more than we can handle. Hubby is not often bossy, but he has put his foot down on me getting a new species of livestock until my current flare up is under control and I'm not stressing about what we already have.


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## dlskidmore

Ug. I called the new doc. I'm now on a waiting list to talk to the waiting list coordinator. I can expect to hear from her in a week.


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## dlskidmore

The doc has a cancellation Monday and I got scheduled in. I'm a ball of nerves.

Worry List.

I don't have adrenal insufficiency
I get no new help
I get a long series of additional tests and specialists

I do have adrenal insufficiency
I'm stuck with blood tests and pills for the rest of my life
I'm stuck with this really expensive doctor for the rest of my life.

Matthew 6:34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

Having trouble concentrating on today's troubles.


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## dlskidmore

New doc agrees that most Fibromyalgia patients have some other underlying issue that should be addressed, and I may have a hormonal imbalance. She proscribed a big pile of tests...


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## happycat47111

I'm just joining in on this thread, but wow. It's encouraging to see so many of you who keep on keeping on but still know how bad it can get just getting off the couch. I hope that makes sense. 

It took me about 15 years to get a diagnosis. From the time I was in my early 20s, I had symptoms. Not one doctor picked up on on it or took the time to sit down and help me figure out what was going on. I probably went through about 10 primary care physicians in that 15-year period, saw an ungodly amount of specialists, had thousands of dollars worth of tests (thank God that was when we had good insurance.) Finally got diagnosed with fibromyalgia in 2008? 2009? (I'm awful at remembering times.) It took me going to a naturopath and walking somewhat away from western medicine.

As it turns out, I also have gluten and dairy sensitivities. I'm not celiac, but if I regularly ingest foods with gluten and dairy in them, my fibro is ten times worse. I went from a regular diet with having to take ibuprofen several times a day just to function to a gluten-free, dairy-free diet and having to take ibuprofen once in a blue moon. It took a couple of months, but the improvement was drastic. The brain fog is better, the fatigue is better, though I do still battle those on a pretty regular basis. Having the pain off my plate so I can deal with the other issues helps.

Staying gluten and dairy free has not been easy. I've fallen off the wagon more than once, and have been off a lot lately. Probably one of the reasons I've been hurting so much, in addition to the weather change. 

Probably the hardest part for me is when my hands don't work, and all the other myriad issues that come with fibro - at least for me, the chances I'll be allergic to any new medicine are through the roof. It seems like if it's a chemical, my body rebels. And my BP is up, to the point the doctors want me on meds for it, but I can't seem to find a BP medicine that works. They either cause very unpleasant side effects, shoot my BP up instead of bringing it down, or both. 

Anyone else fighting the BP battle? Any tips?


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## dlskidmore

My BP is highly variable. I now try to calm myself in the waiting room so my BP will be low during the check so we don't have to argue about the medications. I get critically low BP on occasion, so I don't want any part of the BP lowering meds.


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## happycat47111

I have white coat syndrome. BP is much better here at home than in the office. Doesn't matter if I like the doctor or not, if I'm stressed out about the visit or not. And the last time I had my BP taken, I made the nurse go get a regular cuff, not use that evil mechanical thing. Had to pretty much refuse to let her take it with the beast, which I'm sure just did wonders for my BP, sigh. But the evil beast HURTS, tries to squeeze my arm off, etc. And I'm too crotchety these days to put up with pain if I don't have to have it.


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## dlskidmore

I hate getting my blood drawn... Two phlebotomists, three sticks, they eventually got all the blood the doctor ordered.


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## happycat47111

Do you go in hydrated? Even if you're fasting, you can do about 8 oz of water 30 minutes or an hour prior to the test, and that helps a LOT.

Fun times re: being a hard stick? Glucose tolerance test. Ugh. I got very lucky and got the best guy in the whole hospital doing my draws.


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## dlskidmore

Yeah, did some reading after getting stuck, in addition to hydration they recommend a hot pack over the vein site just before the stick.

I didn't avoid water in the morning, but my water needs are normally pretty low on my current diet.


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## happycat47111

Any advice on how to deal with nausea and gut issues? Most of the time I'm fine, but wow! Got completely waylaid by my GI tract yesterday. Haven't had it this bad in a while. I'll be making some ginger syrup for ginger ale here soon.


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## dlskidmore

happycat47111 said:


> Any advice on how to deal with nausea and gut issues?


Try going grain and dairy free until it passes. For accute issues I have a Chinese soup I like:

Chicken broth (enough for the other ingredients to swim)
Fish balls (like meatballs made from fish)
Ginger to taste
Garlic to taste
Nappa cabbage
Sesame oil to taste

Doesn't take long, you just want to cook the fish a little bit and wilt the cabbage. Everything but the garlic is soothing to the digestive system, the garlic helps fight bacteria, the broth fights dehydration.


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## dlskidmore

My results came back. I've been diagnosed with adrenal fatigue, fungal infection in the gut, possible pancreatic enzyme deficiency, zinc deficiency, borderline D3 levels. The doc doesn't want to go to hormones yet, she's proscribed a giant pile of vitamins. The box came in the mail last night for 30-90 day's supply of each med in glass bottles, box weighed 8 lbs.

I better find creative uses for glass bottles if I keep up this regimen.

Anybody have ideas for a giant pill organizer? I've got a different regimen to take 3 times a day I've got up to 9 pills in each time slot, and half of those are the big pills like calcium or multivitamin pills. I certainly don't want to haul around all those bottles all the time.


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## Ceilismom

dlskidmore said:


> My results came back. I've been diagnosed with adrenal fatigue, fungal infection in the gut, possible pancreatic enzyme deficiency, zinc deficiency, borderline D3 levels. The doc doesn't want to go to hormones yet, she's proscribed a giant pile of vitamins. The box came in the mail last night for 30-90 day's supply of each med in glass bottles, box weighed 8 lbs.
> 
> I better find creative uses for glass bottles if I keep up this regimen.
> 
> Anybody have ideas for a giant pill organizer? I've got a different regimen to take 3 times a day I've got up to 9 pills in each time slot, and half of those are the big pills like calcium or multivitamin pills. I certainly don't want to haul around all those bottles all the time.


DH takes a raftload of supplements, plus his BP med. He makes up a bunch of pill bottles (he saved up empty supplement bottles for this purpose) for morning, and another batch for night, and tosses each kind it its' own box in the cupboard. Marks B (breakfast) and S (supper) on the lids, so if he's traveling, he can take along exactly what he needs.


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## Paumon

dlskidmore said:


> My results came back. I've been diagnosed with adrenal fatigue,* fungal infection in the gut*, possible pancreatic enzyme deficiency, zinc deficiency, borderline D3 levels......


I'm interested to know what course of treatment has been suggested for the fungal infection in the gut. Medications, or change in diet? .... or ...?? Also, were you told the name of the type of fungal infection?


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## dlskidmore

Paumon said:


> I'm interested to know what course of treatment has been suggested for the fungal infection in the gut. Medications, or change in diet? .... or ...?? Also, were you told the name of the type of fungal infection?


I have a nystatin prescription for the fungal infection. I forget the variant of fungus.


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## dlskidmore

Here's the list of supplements: http://my-health-experiment.blogspot.com/2014/11/pills-pills-pills-whats-in-them.html


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