# fibromyalgia treatments



## fiddlefart (Jan 29, 2007)

Just diagnosed with fibromyalgia. I have seen 3 separate rheumatologists and all say it is definitely FMS. Not everyone has an idea of how to treat me since they don't know the cause. One suggestion is to throw Effexor at it but I'm not excited about drugs that treat only symptoms, especially ones that are as new and powerful as this. Looking for any other suggestions, warnings, and experiences.


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## Guest (Jan 29, 2007)

I have noticed mine stays under control pretty darned well as long as I eat organic. I've heard LOTS of other people say the same thing.

I can eat a fast food meal or a TV dinner and suffer for it the next day. 

If you can't afford organic, the main thing is to try to avoid all food additives. Cook everything from scratch and don't eat any processed foods.

An apple a day also helps. There is a chemical in apples that helps control it.


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## marvella (Oct 12, 2003)

it has been discussed on here frequently that a sugar free diet cures it. works for me. then if i fall off the wagon it comes right back.

i am of the opinion that it is caused by high fructose corn syrup. read labels. it's in everything.


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## Karen (Apr 17, 2002)

I also have fibromyalgia and just started reading a book called "How to Be Pain Free in 6 Weeks". Much does have to do with diet and in this book it is talking about eliminating any members of the nightshade family (potatoes, tomatoes, peppers, eggplant, etc.) is almost instant relief in a week's time. Gesh, all my favorite things!


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## Guest (Jan 30, 2007)

marvella said:


> it has been discussed on here frequently that a sugar free diet cures it. works for me. then if i fall off the wagon it comes right back.
> 
> i am of the opinion that it is caused by high fructose corn syrup. read labels. it's in everything.


 Cooking from scratch gets rid of the HFCS.

I use very little sugar. A balanced diet should eliminate or greatly reduce most forms of sugar anyhow.

But I think more is involved than *just* sugar and HFCS. What about MSG, preservatives, and all those other chemicals? They sure aren't helping one's health.


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## fiddlefart (Jan 29, 2007)

I eat almost exclusively organic and cook most all my own meals. I rarely eat sugary food but occasionally have sugar in a recipe as a small component.

As for nightshades - studies have not proven that theory but I rarely eat them anyway.

Have all of you been diagnosed with FMS? Who diagnosed you (their specialty)? What other illnesses did they rule out before diagnosing FMS? Did you have other diagnoses too? Did you keep looking for other diagnoses or have other symptoms unexplained by FMS? Are any of you disabled? Did any of you get a social security disability award due to FMS?

I think these days WAY too many people are being thrown into the FMS category when they have something else going on. There is even a place running tv commercials now for "fibromyalgia sufferers". How on earth do they think they will make enough money that way by treating such a supposedly rare syndrome?

Have any of you looked at the eccentric vs. concentric muscle contraction exercises that are supposed to help FMS sufferers?


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## marvella (Oct 12, 2003)

ladycat said:


> Cooking from scratch gets rid of the HFCS.
> 
> I use very little sugar. A balanced diet should eliminate or greatly reduce most forms of sugar anyhow.
> 
> But I think more is involved than *just* sugar and HFCS. What about MSG, preservatives, and all those other chemicals? They sure aren't helping one's health.


that's true. the problem clearly lies in all the processed foods most people eat.

however, the only thing i changed in my diet was avoiding sugar, and the fibro cleared. at potluck suppers at work, when i have to have at least a taste of every dessert (  ) i can feel it for a couple days after.


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## nana-san (Sep 22, 2006)

Fiddlefart, i was dx about 8yrs ago by a rheumatologists after seeing several other medical doctors. It is a vicious cycle and definately requires a lifestyle change. Exercise helps but a little at a time. I'll feel bad and then when I feel great I think I am superwoman and the cycle starts again. Diet change may help but the bottom line is a chemical imbalance with the brain secreting less serontonin leading to less sleep. Rheumatologists are the best to dx FMS. There is no diagnostic test for FMs nor is there a cure.
I joined the National Fibromyaglia Association, they have good info and send newsletters.[/URL]http://www.fmaware.org/fmOnlineNewlwtter/2007/no1[/URL] 

Pain is ususally amplified and radiates to different areas of the body. If you would like to discuss more just PM.


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## fiddlefart (Jan 29, 2007)

Thank you, all. Nana-san, I have been sick for at least 7 years, getting progressively worse. I just thought I was burned out from working so hard (self-employed). I finally sought medical attention a couple of years ago and no one knew what to do with me. Then someone said fibromyalgia (rheumatologist) but when I didn't respond to physical therapy and diet changes, I wasn't satisified that that was all I had going on. Furthermore, I was increasingly upset that the doctors hadn't done enough investigation to rule out several other serious diseases (and the current literature I've seen says FMS is a syndrome of several diseases so you can't ignore one without dealing with the other but you do have to realize that some of the bundle of diseases really can't be tossed off as "just part of FMS" just as they can't all be treated individually). I've pushed for more investigation over the last year and everyone says I'm not normal in each of these areas but they don't know what is going on. I worry that they are just unwilling to investigate further because FMS would explain it all so they'd rather not waste their time on me (especially when dealing with a doctor that doesn't believe in FMS or that says far too many of his patients come in saying they have FMS when they really don't). After this year of doing some of the major tests (not all of the ones I want - I still think I should have a pet scan of my major troublesome areas to rule out tumors or other weird things but they are so far still refusing to order that test, one assistant even said I'd be getting too much radiation I've barely had any such radiation so that is just an excuse on her part), I have now seen 2 more rheumatologists. The first of these thought I had some other disease for which I tried 7 months' Rx treatment that did not help. With re-evaluation from other specialists we think that was not the right Dx so I stopped the Rx. I will see this rheumatologist again this week so want to see what they have to say now. In any event, when I first saw this rheumatologist, they concentrated on this other disease so much that at the end of the first appointment I had to ask - what about FMS? This doc then said yes, still FMS too, but did not fully re-evaluate me for it and did not discuss it or offer any treatment options for it.

A few months later another of my doctors asked that I see the third rheumatologist, which I did recently. He said absolutely FMS. I'm more inclined to believe it now that I have had some of the other tests done and seen three docs that are as close as one can get to generalized experts in this syndrome, but I still think they have not done quite enough (mainly pet scan). Will see the original referring doc again before I decide if I will take the drugs for FMS. At this time I am still not inclined to take such strong psyho-active drugs with mixed history on an off-label use and potentially horrendous long-term withdrawal effects.

I'm also concerned that the drugs (namely effexor at this time) are addictive since that runs in my family AND since it appears many FMS patients start at a lower dose and quickly max out within a short number of months as the effectiveness wanes. Eventually they get to about 10 months (just from what I've read anecdotally online, mind you) and have no noticeable help from the drug anymore so go to withdraw and have more troubles. That doesn't sound like something I'd like to do BUT I do have to take a step to help myself beyond what is already not helping.

I have not had any luck with the exercises of stretching so can't even move on to strengthening and eventually cardio. I used to be hugely active but am now completely disabled. I have had to stop working and that is a vicious cycle as one starts to feel useless (not helpless, as in depression, mind you, but useless as in unable to pull one's own weight).

After more than 2 years out of work, I have begun the application for SSD and it is a terrible, uphill battle that seems to add insult to injury. I don't WANT to be disabled. I WANT to work again. I WANT to get better. I WANT to enjoy all the activities I once did. I WANT to be independant.

Does any of this sound familiar???


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## fiddlefart (Jan 29, 2007)

Back on topic - here is an interesting resource my husband came upon:

http://www.immunesupport.com/Library/showarticle.cfm/ID/4178/HealthWatch/HealthWatch-Spring-2003

Especially the Over-The-Counter section:
"Over-the-Counter Approaches to FMS

The previously mentioned studies examined single-agent medications that were subjected to rigid federal controls and have been or will be licensed for distribution by prescription only. The following clinical study was performed with similar care but used an over-the-counter, multi-ingredient, nutriceutical (EM Power+) that had not been subjected to the same standards regarding production or proof of efficacy. This study, conducted by Martin and colleagues[62] from the University of Calgary, Calgary, Alberta, Canada, was randomized and placebo-controlled for 6 months and then extended to an open-label follow-up for an additional 3 months. The studied agent contains 36 "natural" ingredients and has been reported[63] to show efficacy in the treatment of FMS.

Ninety-nine patients with FMS (ACR criteria) were enrolled and randomized to receive 24 tablets per day of the investigated agent (n = 51) or matching placebo (n = 48). Assessments included the total myalgic score (TMS, identical to the TPI), the FIQ, a Self-Efficacy Scale (SEF), the Center for Epidemiology Scale for Depression (CESD), a quality-of-life scale (QOL), and the Illness Intrusiveness Response Scale (IIRS).

The study found comparable improvements in both participant groups. No significant benefit for the FMS symptoms was attributable to the nutriceutical preparation. There was no agent-specific improvement in the TMS, FIQ, SEF, CESD, QOL, or IIRS during the blinded drug phase of the trial. Curiously, there was some improvement in the TPI score during the final 3 months when all subjects were taking the active agent on an open-label basis. The investigators concluded that these results argue against nutritional deficiencies being a causative factor in FMS and against the efficacy of this nutriceutical for FMS.

Patients with FMS are sometimes suspicious of traditional medicine and wish to use only natural products that they can purchase over the counter. Such purchases may have the benefit of giving the patient the perception of self-control over their FMS symptoms. An important problem with the interpretation of the data from such a study is that most nutriceutical preparations contain multiple ingredients. Several interpretative conundrum scenarios can be imagined in response to careful study of such an agent:

â¢ If statistically significant benefits were observed after careful blinded comparison with a placebo intervention, one would not know which of the 36 ingredients was critical to the outcome (although that issue may not really matter to the improved subjects).

â¢ If an adverse effect occurred it would be impossible to determine with confidence which of the 36 components was responsible, and it would be similarly difficult to remove 1 component from the mixture to maintain the presumed benefits from the other 35 components.

â¢ If a lack of benefit from such a mixture were observed, one might still wonder whether one of the ingredients was actually moderately beneficial, but opposing effects from some other ingredient prevented it from being experienced or observed.

â¢ Whether benefit or lack of benefit was observed with a multicomponent nutriceutical, it would be difficult to know how to use the information to advance to the next generation agent or develop similar preparations, because there would be no direct class comparisons (as is possible with comparisons between each of the SSRI drugs or tricyclic drugs). Each new preparation of nutritional ingredients would have to be tested independently to discern the presence of any therapeutic merit."

I tried a lot of OTC herbal and supplements and got nowhere. Maybe this is why...


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## Milkwitch (Nov 11, 2006)

I am no Dr. but I have had the symptoms of fibromyalgia for the past 10 years. I have read so much and tried so many different things. I vote for no sugar, and additives for any form of good health, but I have come to believe fibromyalgia is a build up of adrenaline around the muscles. In our modern lives we get that fight or flight type of stress so often and there is no follow up release. The hormone is not effectively moved out of the muscular system and it turns to poison over time. 
I have been able to find relief, I do have flair ups but they are getting less and less, now it is mostly when I have to deal with stressful situations or get cold in my neck and shoulders. Last year I actually milked a cow by hand for 12 months, which 4 years before I would have known for sure I could never do. Diet is very important, but a long term stress relief program will save you. Herbs that cleans the blood gently. Massage. Meditation. anything that actively relaxes the body. and exercise to move the toxins out of your muscular system. Find something that you really love to do. I helps so very well! I also got a sheep skin vest, I live in it even thou I look like a tan whale. 
Good luck! It is a very painful but don't give up! you can over come it. Personally I stay away from the drugs, they always bring their own problems.


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## steff bugielski (Nov 10, 2003)

They say most people diagnosed with FMS actually are suffering from chronic Lyme. Have any of you had the western blot test to rule out Lyme?
Steff


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## fiddlefart (Jan 29, 2007)

No, have not been tested for lyme, no reason to think I've been exposed so docs say it is not necessary. It is very unlikely in my area.

2 of the 3 rheumatologist I saw say I scored extraordinarily high on the FMS criteria (high 90%). The third hasn't commented on how high I've scored, just that they're also sure that's what I have.


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## fiddlefart (Jan 29, 2007)

I found some GREAT information that I plan to follow-up on. Saw #2 rheumatologist (my main rheumatology doc) yesterday and they mentioned "Dr. Robert Bennett, MD" at OHSU. I looked him up and some really interesting articles came with him and his colleagues.

Has anyone tried these things, especially the high dose B12 injections???

Bennett on Fibromyalgia

Other basic info. on fibromyalgia:

The Scientific Basis for Understanding Pain in Fibromyalgia

 Fibromyalgia information from university based health professionals at OHSU

In the Chat Room with: Dr. Robert Bennett, M.D. May 19, 2000, 1 p.m. (PST)

Information for Health Professionals


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## BeeFree (Feb 23, 2004)

I have had FM for over ten years. I have been DX by 3 rheumatologist. I have had my regular dr test me for most everything I can find that might be like FM. Lupus, low Cortisol, Lyme, Thyroid, just a few I can think of. 

I just have no energy and can't find anything I want to do anymore that satisfies me as far as hobbies. I do anything I hurt. 

I tried cutting out all sugar to see if that helped me, didn't seem to make a difference.


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## nana-san (Sep 22, 2006)

Fiddlefart,


Thanks for the links. I am always looking for new material to read. Just remember to take each day and listen to your body. I live with pain everyday and do not sleep. I am lucky if I get three hours of uninterrupted sleep. As I mentioned before it will be a lifestyle change. Do not let the FMS define you as a person. There are days that I do take pain meds, I would prefer not too but it helps and those are the days that I know I need to rest. Another important thing is to keep positive people around, it will become easy to get depressed because you no longer can do the things that you were once ablel to to do.

The human brain is amazing. FM sufferers' nerve endings and pain perception become amplified. It is challenging for someone who does not live it to understand. Imagine hugs, which are suppose to feel good to be painful and sometimes what makes it worse is that we often do not look "sick".

FM is not visible like MS or Palsy or someone missing a limb or suffering from cancer. it is all internal and it doesn't cause disfigurment to our joints like Rheumoid Arthitis.

You will have your ups and downs with your friends, family and most importantly with yourself. It is normal, you will need to find a balance but it will not tale days, weeks or even months. Even now, I sometimes will not take medication to sleep because it should be the most natural thing in the world. But my brain doesn't not secrete enough and I need the artificial hormones that my brain is not secreting for itself. 

It is all in how our brain perceives the pain, our receptors to not function as they should.

I could discuss all day because of my expericence and am more than happy to share with any of you.

Nana-san


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## suburbanite (Jul 27, 2006)

exercise.

if you have fibromyalgia, exercise will help.

if you have chronic fatigue syndrome, exercise will wipe you out.

So at least you'll know if your diagnosis is right.

some people with fibro are helped by an allopathic med called 'flexeril', a muscle relaxant that I think is a benzodiazepam (weak cousin to valium). this is supposedly due to its effects on sleep phases rather than its relaxant/sedating effects.

If you have other problems (eg: arthritis) you need to have those treated in order to handle the exercise. I'm not talking marathons here, but things like yoga and tai chi. If you like running you can do it but use the 'target heart rate' method (search engine this phrase for details) to gauge intensity and duration so that you don't overdo it.


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## Marilyn in CO (May 12, 2002)

Just a thought.......I was visiting with a chiropractor that does the neuromodulation technique for FM and he mentioned that fact that all cells have memory, so whenever we have trauma to the body(physical or mental), it is stored somewhere. Over time if the body cannot rid itself of accumulated trauma such conditions as FM, lupus, MS, EB and other auto immunes, will manifest. He uses the NMT to reprogram the body and recover from those accumulated stressers. Recovery is much like taking off the layers of onion. 

I really agree with the thought about the adrenalin overload on the body and being in a constant flight or fight mode. Being able to let go of stress and keep the mind at peace is soooo important. The body responds to "everything the mind thinks", so if we are in constant stress mode, our physical bodies will suffer.

My sincere sympathy to all those who suffer with this condition and never give up hope that there is a solution just right for you. I believe with all my heart that there is always healing for any malady.


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## connie in nm (May 11, 2002)

I did research for a friend of mine who suffers from FM. I told her to try Malic Acid and Magnesium supplements. Malic acid is from apples. It worked wonders for her . Hers is worse in the hot weather, but this combo will almost keep it in remission.

I think everyone is different and you just have to try different things to find out what works for you. I have RA and this is what I have had to do.


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## fiddlefart (Jan 29, 2007)

See, this is the trouble, all the conflicting "data"! I have tried malic acid and just about every other remedy out there in the Prescription for Nutritional Healing/Cures books and others. I have tried exercise and just can't do anything - not even stretches. One day I feel ok and can do them and they help. A few days later, when I didn't think I was anywhere near overdoing it (literally 5 minutes stretching on prior days) and I am wiped.

On CFS vs. FMS, all docs I've seen say they are same but different. In other words, they are the same but each doc prefers one term over the other.

On both, they are syndromes, not diseases, meaning they are an unexplained grouping of symptoms in a specified pattern. So why they tell me not to treat each symptom on one hand and then to treat each symptom because that's all we can do on the other hand, makes no sense. If neither is a disease, why can't we keep looking for the underlying diseases? Seems my docs have hardly done anything until recently. They just want to shove me into the FMS category and leave me be.


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## Milkwitch (Nov 11, 2006)

I have given up on Dr.s a long time ago. They are a great help, but bottom line is you have to do it yourself. They are no gods, we know our bodies and how we feel. I do not know you at all only you can know how you have treated your body over how many years. One thing I can say I am sure of is that you are in pain. I have lived for the past 20 years in pain of one kind or another. I know how it feels. It is frustrating and depressing. But at some point you will become tired of feeling this way, then you will start to find what you need. Find one thing that helps some. keep at it. as sappy as it sounds find a place where you are comfortable for 10 mins or so and ask your self what you need to do to feel better and ask for gods help. I mean this all literally. 
I am doing things today that 7 years ago I would never have thought possible. 
Doctors simply do not know. There is no magic cure. But you CAN get better. 
Trust yourself! Believe in yourself! and get down to work!


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## Peacock (Apr 12, 2006)

I've never been officially diagnosed with fibromyalgia (I hate going to the doctor) but I do get very achy. I also have occasional pain in my hips and sciatica. I think it's fairly well proven that sugar worsens inflammation and resulting pain in those prone to it. I've found that if I cut down on the sugar I feel a lot less achy. Also I feel a lot better when I drink a lot of water -- the advised 8 12-oz glasses a day. Two years ago I was bowling on a league and very nearly quit because of the pain, but I've been watching sugar and drinking more water and never had problems like that since then. Worth trying, and good advice no matter what.


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## coryy (Nov 6, 2005)

I got a LOT of help from dietary changes, but I can thank my acupuncturist, too. he was a miracle worker.


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## hoofinitnorth (Oct 18, 2006)

They are now saying fibromyalgia is NOT an inflammatory syndrome and thus it is not usually helped by NSAIDS. Any thoughts on this?


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## LMonty (Jul 31, 2006)

> They are now saying fibromyalgia is NOT an inflammatory syndrome and thus it is not usually helped by NSAIDS. Any thoughts on this?


IMHO NSAIDS dont help the cause like they would with inflamaation- but can still be helpful as pain releivers for some.

"sugar" isnt the only culprit. it's alow carb diet like Atkins or South Beach that seems most helpful. (after all, starches ARE sugar as soon as they break down) Avoid anything "white" thats a starch and see if that helps in a few weeks. No white potatoes, no rice, no white bread, limit the whole grains even to start keep carbs under 80 or 100 a day for a month. That may prove helful

gentle exercise to build stamina. Dont overdo. 3 ten minute sessions a day are usually beter tolersated thatn one 1/2 hr session,and just as good. 

malic magnesium can be helpful, but unless you limit carbs, get restorative sleep and limit tress (yea, right! I know) its not gonna help much. Tryto work onthem,a ndthen add the malic mag back.

antioxidents, omega 3 fatty acids and CoQ 10 all seems useful if used in moderate doses daily and are important for health anyway. Again- not a cure, but do help if the major offenders mentioned above are under control.

MANY many FMS'ers also have MPS - Myofascial Pain Syndrome. Read up onthat- trigger points need a differnet approach. A TheraCane is one of the best investmetns you can make in that situation, will really, really be worth it. 

So are two great books:

http://www.amazon.com/Fibromyalgia-...ef=sr_1_1/105-1297547-6524401?ie=UTF8&s=books

http://www.amazon.com/Trigger-Point..._bbs_sr_1/105-1297547-6524401?ie=UTF8&s=books

I was at the point I thought Id be going on disability soon. These modifications have made me darn near back to normal. Still have crappy stamina, and if I screw up my diet-I pay for it! But its hugely better than what I was living like for years. I'm greatful.


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## LMonty (Jul 31, 2006)

oh, you may find this interesting too. I was treated by Dr Flechas for few years when I lived in NC (was worth the drive!) and he really is a gem. His nitric acid protocol is one of ht emost useful things developed.I disagree with some of his dietary recommendatiosn- at least for me. Every body is different. Experimentation is worth it. Especially if you get to the point where youre wondering if life is worth living anymore because of the constant global pain. BTDT. Thank God I got past it. http://www.helpmythyroid.com/fibrofaq.htm


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## hoofinitnorth (Oct 18, 2006)

Interesting. I've read that FMS's cause is unknown. I've also been told, by a rheumatologist, that FMS is not a disabling condition.  OK, then what do I have that IS because I haven't worked for almost 2 years and it ain't because I don't want to!


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## fiddlefart (Jan 29, 2007)

Sorry I was gone for so long. I re-read my original post and noticed that it may have been a bit misleading. My diagnosis is not new, it is just recently confirmed by a 3rd rheumatologist.

Since I was last online I've seen the #2 rheumatologist again for a follow-up. They wanted to put me on an anti-depressant amitriptalene (sp?) for the pain perception and an NSAID called sedantel (sp?). The #3 rheumatologist wanted to do Effexor. I asked #2 rheumatologist about Effexor and they said they liked Lexapro better but thought amitriptalene would be better for my situation. They also still think I have something other than fibromyalgia as they say it doesn't explan my "small joint pain". Does it? I will have to ask #3 about that when I see him in a month.

#2 rheumatologist wanted me to go talk to a sleep doc again. I saw him this week and told him what #2 and #3 are saying and asked what he would suggest given my sleep study. He said amitriptalene and the older anti-depressants are more toxic to the system and are usually single-channel receptors or something like that. He said Effexor and Lexapro are dual channel and would be better for me. We discussed for over an hour and he also wanted to add neurontin to help sleep patterns. So he wrote a prescription for Effexor at 37.5 mg in the morning for 2 weeks and then bumping up the dosage to 75 mg in the morning. This correlated with the dosage of Effexor that #3 rheumatologist wanted to give me. For Neurontin at 400 mg at bedtime flat. I will see him in a month unless I have intolerable side effects.

The sleep doc said it would be a good idea to go south to another clinic but that if I go there before I've tried any of the drugs that are commonly used for fibromyalgia, they will send me home to do so before they will do anything else. He said that sometimes it's just trial and error with the SSRIs and SNRIs and even the NSAIDs to see what helps each person since we're all different. He said there is very little chance of long-term bad side effects at these dosages and that most people tolerate the drugs fairly well at these dosages. He also said that if I didn't feel better soon with them, we would change up the drugs again and keep re-evluating. He said some other profound things that we'd just never heard before, like the difference between addiction and dependancy (since I do NOT want to go down that road) and the reality of the facts of how to carefully use these drugs. He said it's always a very careful watch thing. He said a lot more that made sense that I just don't remember right now. And he understands fibromyalgia and how it relates to sleep patterns, even though he also says he's no fibromyalgia expert.

I took the prescription home and started researching a bit more. I had already researched Effexor a bit so just looked into Neurontin. My husband and I talked it over and then I took a long deep breath and decided to try it. Had it filled the other day and started the Neurontin 2 nights ago and the Effexor yesterday. So far I am groggy and out of sorts and not sleeping well but the docs all said it would take about a week for the Neurontin to help if it's going to help and about a month for the Effexor to help. I don't like the way I feel right now but I am willing to stick with it for a short bit unless I get worse.

Anyone else been down this path?


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## LMonty (Jul 31, 2006)

sure have! 


one factor about elavil (amitriptiline) that I fund unaccpatable for me is that the vast majority of people using it seem to experience a significant weight gain! IIRC lots of folks on the FMS list that I knew years back experienced it too, and many refused to take it for that reason- the minimal benefit they found from the med was not enough to balance the dowbsides of the extra weight. 20 lbs easy, with no other factors to account for it that Ive seen explained. Ive heard it speculated that it may slow metabolism? I really dont know why it happens. 

sounds like youve got a good handle on the tradtional alleopathic approach. I'd share with you that many Ive know including myself got significant benefits from adding some of the less traditonal methods or supplements to it, with the knowledge of thier healthcare providers. Hiope you'll conside that and find luck with it too.


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## fiddlefart (Jan 29, 2007)

The docs said Effexor could cause hunger or weight gain. At this point I'm not thrilled about that but I've already been putting on weight with just the fibromyalgia due to the lack of exercise. I just can't tolerate any amount at this point. 

Anyway, I have tried dozens of supplements and other OTC and alternative things but had no marked results.  Any suggestions *LMonty*?


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## Ninn (Oct 28, 2006)

I hate this "syndrome"! 4 years ago, I was diagnosed with FMS, CFS and degenerative osteoarthritis in my hip and spine. I was 34. I was pulled out of work immediately by my PCP, who was worried about the effect my meds would have on my job performance-falling asleep behind the wheel or at work was a distinct possibility. He permanently disabled me after 3 months of med evaluations and no relief in sight. Fast forward-now I am 38, unemployed, uninsured, receiving no disability benefits, and still in pain all the time. I have tried all the OTC treatments I could find, changed my diet, exercised, stopped exercising, etc. All I want is to get a decent night's sleep and be able to support myself! I am sick of having days where I need help to put on my underwear!!! I want to tie my own shoes! I am sick and tired of being sick and tired. My rheumatologist, who charges 350 for a 15 minute appt., hasn't seen me in over 3 years. I have been off meds since I lost my insurance. Can't get disability approved without medical history. Can't get medical treatment without insurance. Can't get insurance if I can't work! Can't work because I'm disabled! (anyone else see a pattern here?) I am currently begging my PCP to allow me to go back to work and just max out my pain meds. I can't stand it any more. I was pulling in a grand a week 4 years ago. I have lost 3 homes due to lack of income. I still have kids to feed and raise, and a dream to build. I can't handle the emotional stress of always being afraid anymore. I need to work-even if all it does is keep the mortgage paid. I can't take any more fear in my life, and that's all this "syndrome" has offerred me. Fear and Pain. I don't want to be on welfare-something has to give here-soon.


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## swampgirl (Aug 29, 2006)

If you are unable to work due to disability & have no insurance or money to get the medical paperwork filled out for Soc. Security Disability, you should find the best Disability Lawyer you can & get him to advise you. Usually, they will take their fee in a lump sum once you win your case. That's how they make their money, so if the lawyer reviews your claim & won't take you on as a client, you're up the creek, so to speak.


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## Guest (Mar 1, 2007)

Ninn said:


> I have tried all the OTC treatments I could find, changed my diet, exercised, stopped exercising, etc. All I want is to get a decent night's sleep and be able to support myself! I am sick of having days where I need help to put on my underwear!!! I want to tie my own shoes! I am sick and tired of being sick and tired.


 Avoiding ALL food additives works for me. The easiest way to do that is go organic. MSG and it's 40+ sisters is a big culprit, and those are in nearly everything on the grocery shelf that's not labelled organic. Aspartame and high fructose corn syrup also exacerbates it. Almost all non-organic foods have at least one of the above in them, and usually several.


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## Ravenlost (Jul 20, 2004)

I've been reading this thread with interest. I was first diagnosed with FM eight years ago by a chiropractor and got a confirming second opinion from a medical doctor. Four years ago I saw a Rheumatologist. He did extensive bloodwork, background history, etc. and confirmed the FM diagnosis. I also have severe arthritis, Chronic Bursitis, Rosacea, Ocular Rosacea, IBS, acid reflux, and MS. I haven't worked in eight years. 

I take 50 mg of an antidepressant (Zoloft) nightly and will never let my prescription run out! It helps a great deal. I also take an OTC sleep aid nightly, otherwise I will be up and down all night. Getting a good night's sleep really makes a difference.

I have cut out high fructose corn syrup and have found it helps with the FM and IBS. I am in the process of making our diet completely organic. Food additives are definitely a big problem for me...especially concerning the IBS. 

Weather changes are hard on me. If we have rain coming in I can forget having a good day. Hot weather exhausts me...completely drains me of energy and cold weather makes me hurt all over. Spring and Fall are my friends!

I've spent the last eight years searching for different diagnosis for different aches and pains, but it almost always comes down to FM. Sometimes you just have to accept the FM diagnosis and make the best of what you have.


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## Marilyn in CO (May 12, 2002)

I was wondering if any of you with FM can think back to a trauma either emotionally or physically before the FM. All the cells of our body have memory and store trauma, if it is not somehow released. I know a chiropractor that uses the NMT(Neuromodulation technique) for FM and has great results. He says most auto-immune conditions, especially FM, occur from layer upon layer of trauma to the body(emotional and/or physical), much like the layers of an onion.


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## Sonshe (Jun 17, 2006)

Marilyn in CO said:


> I was wondering if any of you with FM can think back to a trauma either emotionally or physically before the FM. All the cells of our body have memory and store trauma, if it is not somehow released. I know a chiropractor that uses the NMT(Neuromodulation technique) for FM and has great results. He says most auto-immune conditions, especially FM, occur from layer upon layer of trauma to the body(emotional and/or physical), much like the layers of an onion.



There is a lot of truth to the above statement. I recently found a chiropractor who uses the NMT method. What takes most patients 10-12 treatments has taken me 6 months and I'm still going.

One thing that no one has mentioned is the possibility of underlying viral infections. If you've had any kind of measles, chicken pox, etc., you have a latent (I think that's the word) viral infection that never goes away but will cause havoc again in your body if the conditions are right. 

I was diagnosed with CFIDS many years ago. Nothing works except watching my diet closely for preservatives, chemicals and to avoid petro-chemicals as much as possible. I have run the gamut of all those test and all kinds of treatments/drugs to the point I HATE even hearing someone suggest something else. However, with the chiropractic treatments and detoxing my body as much as possible, I still hurt and ache but not as much. But I'm also very well aware that one little thing can set me off again and I'm back to "Square One.".

Why is it that more and more people are coming down with this disease? I believe CFIDS and/or Fibro are catch-all terms for environmental toxicity -- allergies, toxins (do you know what's in your drinking water?), viral infections, injuries, etc. -- to our bodies that each of us has to be careful and vigilant to find ourselves and eliminate as much as possible.


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## hoofinitnorth (Oct 18, 2006)

Is there an alternative or generic form of Effexor coming out any time soon? It has been mentioned to me for dealing with chronic pain but I have been hesitant to take an anti-depressant for an off-label use and now I find out Effexor is made by Wyeth-Ayerst (bad pregnant mare's urine folks). I won't buy their products if I can avoid it.


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## Guest (Mar 5, 2007)

Sonshe said:


> *Why is it that more and more people are coming down with this disease? * I believe CFIDS and/or Fibro are catch-all terms for environmental toxicity -- allergies, toxins (do you know what's in your drinking water?), viral infections, injuries, etc. -- to our bodies that each of us has to be careful and vigilant to find ourselves and eliminate as much as possible.


 Food additives.


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## Ravenlost (Jul 20, 2004)

Marilyn in CO said:


> I was wondering if any of you with FM can think back to a trauma either emotionally or physically before the FM. All the cells of our body have memory and store trauma, if it is not somehow released. I know a chiropractor that uses the NMT(Neuromodulation technique) for FM and has great results. He says most auto-immune conditions, especially FM, occur from layer upon layer of trauma to the body(emotional and/or physical), much like the layers of an onion.


I don't have enough fingers and toes to count all the emotional and physical traumas I've suffered over the years (was married to a very abusive man for seven years).


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## a1cowmilker (Jun 14, 2005)

I was dx about 7 years ago. (rheumatologist). He prescribed flexeril and it has been wonderful. I rarely have a really bad day, and it usually only lasts a day. Simple carbs are bad for me. White flour and white flour make me pay the price. 

I would never let my flexeril script run out! 

What I hate the most is injuries. I can sprain my shoulder or leg (anything) and it can take a year or 18 months to heal. I try very hard not to hurt myself. I also try to not over do the exercise. When I do, it takes a very long time to quit hurting.

I pray that you find relief soon, I know I suffered way too long with it. And I thought I was just a lazy worthless baby.


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## mzzlisa (Feb 22, 2004)

ladycat said:


> Food additives.


YES!!!!!!!!!! If I can't pronounce it, I don't eat it.
A small amount of MSG is tolerable, but if I go out for Chinese, I can't walk the next day. 
I too have been reading this thread with interest. I am going to try eliminating the corn syrup next. 

Sleep does matter. My fibro has mainly manifested itself in a severe sleep disorder. I never let the Ambien run out and am (impatiently) waiting for it to go generic. At $150 a month, its killing me.


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## Irish Pixie (May 14, 2002)

I have Lupus and fibromyalgia. I've had the symptoms of each going back almost 30 years, but was dx'd in 1990. I have had 3-4 rheumatologists (plus a variety of family docs) confirm both dxes, one of those Dr's is convinced that fibro is a type of Lupus, others say no way.

The biggest thing for me is sleep, unbroken sleep-all-night, sleep. When you're sore you sleep, the pain will wake you up, you move to a comfortable position, over and over. I take Effexxor (I've had no side effects) but I could probably drop it since my Family Practioner put me on Lunesta. I finally sleep all night- and I wake up feeling pretty good for the first time in 20 years. Diet and exercise are important, but a good night sleep is vital.

Stacy


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## hollym (Feb 18, 2005)

I agree about the food additives. Aspartame messes me up badly, so does MSG. 

I think our lifestyle is also so much more stressful today.
And the infection link was proved to me recently when I got a jump in health after removing and infected tooth. 

The trouble with fibromyalgia is that everyone has their own root causes and they are myriad. It's my opinion that the best way to fight it is to trace each and every possible trigger for it and see what you can do to take care of them one by one. One book that I have says that the great thing about fibro is that it will force you to get into the best shape of your life! 

I do find that moderate amounts of excercise regularly help me a lot. But if I overdo it at all, I hurt. I've had very good luck with supplements for pain, I take MSM and it helps a lot. I never got any relief from any otc pain med, ever. 

Sleeping is a real key. Get sleep however you can. I had good luck with some CD's that I played at night over and over again, also took kava and valerian for a while, but kava is supposed to be bad for your liver and valerian isn't all that great for it either. I sleep on one of those double air mattresses with a little air leaked out of it, a foam pad and a couple of quilts on top of that, lol. My joke is that I'm working up to being the princess and the pea! 

Just be sure you take care of yourself and don't let people make you feel like you are making a fuss over nothing because you aren't. Do what you can and bag the rest. Try to avoid stress. Eat well, rest when you hurt. These are all simple things, but they can really help. Hot baths with epsom salts and a bottle of hydrogen peroxide can help you sleep and relieve some of the pain on bad days. 

I have reams of things that I tried that worked for me, but I am also blessed to not have this as severely as some people that I know. 

Oh, yes, weather changes do not do good things to me either! 

hollym


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## Patty0315 (Feb 1, 2004)

Everyone has very good suggestions. I have Lupus and alot is trial and error. I have taken just about every med there is . I finally got to the point that I have Lupus it does not have me. I refuse to live my life for this disease. I now take no prescription pills. I might have to again some time and will deal with it then.

When I stopped feeling sorry for myself. When I realized I was wasting the only life I had being drugged I stopped. Am I in pain ? Yep , but I deal. After all I have a life to live.


Patty


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## charliesbugs (Feb 25, 2007)

I have sjogren's syndrome with dry mouth,eyes, nose,ears,etc. and extrenme fatigue and pain in all the trigger points.Weather affects me,too.I am on disability( for almost two years).I have reflux,restless leg syndrome.I take many meds.Sent a pm to nan and told her to go to Patient assiatnace programs.I get many of my meds thru them.it really helps.I take ambien ,too, and hope it comes out Soon in generic.It's outrageously expensive, but don't sleep without it and ulram and requip.As I told nann in my pm, I have learned to pace myself(lol) , and then I fell good and overdo it and Pay for it.The fatigue is almost worse than the pain.Hang in there all you fellow sufferers.Blessings and Happy Easter to you all.


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## PonderosaQ (Jan 12, 2004)

I've gone the rhuematologist route for over 10 yrs. Before that I tried diet, exercise, chiropractic, herbs and other supplements. I have a long list of the accompanying ailments...allergies, IBS, asthma, sleep distruption etc etc. Recently I went to a presentation by the chair of the neurology dept at a local medical school. It is his opinion that fibro is neurological disorder. In fact 75% of his practice is fibro patients. One of the very different thigns he does is put his patients on a vitmain and mineral supplement called a Myers Cocktail that is then customized to your needs and given via IV. He says we just can't absorb the necessary nutirients through our intestines amongst other things. Unfortunately he is sick so I don't know how long I will have to wait for an appt with him. My daughter has seen him and is feeling much better. She says the supplement alone has improved her energy level greatly. I too have been trested for all kinds of disorders with no positive results.All we can do is just keep on trying and hoping we'll find something that gives us back our lives and frees us from pain. Good luck,
PQ


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## Pony (Jan 6, 2003)

Marilyn in CO said:


> I was wondering if any of you with FM can think back to a trauma either emotionally or physically before the FM. All the cells of our body have memory and store trauma, if it is not somehow released. I know a chiropractor that uses the NMT(Neuromodulation technique) for FM and has great results. He says most auto-immune conditions, especially FM, occur from layer upon layer of trauma to the body(emotional and/or physical), much like the layers of an onion.


I totally believe that FMS is trauma related. A good deal of the literature on the subject points to memories stored in the prefrontal cortex as the culprit. 

Hm. People are like onions. I thought it was ogres.


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## tailwagging (Jan 6, 2005)

I have had it for 24 years, before they even knew what to call it. I was on so much stuff and tasted so much I felt like a sugar maple tree being sapped of my blood. I was even on SSI since I got it when I was 17 and hadn't worked enough work hours to get disability. I am no longer on any pain meds. and no longer on SSI. wholes foods helped more then anything. and not over doing it on my good days. Even though I have been off meds for over 3 years health insurance would be over $650.00 a month just for me.


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## Pony (Jan 6, 2003)

I've been very aware of my diet, and since we've moved to the farm, it's been a lot easier to eat healthy.

Of course, I have a tendency to overdo it when I'm having a fabulous day, which leads to some not-so-fabulous days. 

I'm down to two meds, and hope to be able to get off those as I go along. In the meantime, we'll just have to see.


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## Elsbet (Apr 2, 2009)

You might be having food reactions that you don't know about. My Chiropractor has suggested cutting all nightshades out of my diet to help with the fibro pain. With my other dietary restrictions... well, I wouldn't have much left to eat, sigh. Dairy can be a culprit, too.
You might want to keep a strict food diary and rate your pain every day, when it peaks, where it manifests, etc. Rate it on a scale of 1-10 like they do at the doctors' or emergency room, and date and time. You may be able to find a trigger that you aren't expecting.
I find that after eating fish, though, I have several good days with much lower pain. Same with eating spicy Indian food, or fresh fresh fresh fruits and berries. Fresh pineapple is good for anti-inflammatory properties- it loses them when it is heated, so you have to buy fresh.

I hope you find your answers, sweetie, and can get back to work and live as pain free as possible. I hate this for you. I know what it is like, I was using a cane most of the winter, when I was able to walk out at all, and had to have help climbing in and out of my bathtub... had to have help just to roll over in bed sometimes! That kind of pain just sucks out all the life and joy and really isolates you, and I hate that for you, because I KNOW. 
Praying.


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## Kathleen in WI (Nov 27, 2003)

I've had FMS for 11 years along with Sjorgren's, migraines and mixed connective tissue disease. I did eliminate nightshades and found it to make not much difference. Magnesium (liquid) makes a huge difference. Along with avoiding processed foods.

My health is the main reason we moved to Colorado. The humidity and pressure changes in Florida about killed me. I'm hoping to do better here but I think it's too soon to tell.

I had Flexerill and found it pretty useless. I have Baclofen now along with another one I can't remember the name. I don't take them much. I was actually on about a dozen or so meds and just kept getting sicker. I finally dropped all but two and added quite a few supplements and I'm doing better.

I'll never be pain free, but I can function most days now.


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## ChristieAcres (Apr 11, 2009)

I have been reading this Thread and had meant to respond sooner. First, my heart goes out to all of you suffering from FMS and numerous associated/connected health conditions. My story:

At the age of 28, I awoke one morning, and felt like I had the flu. The preceding year, sick baby all year, one thing after another- me so little sleep, it was unreal that whole year. Then, this, the morning changed the course of my life. This "flu" got worse, soon, I felt intense unexplained pain, slept but felt like I hadn't, couldn't get out of bed without very slowly moving, and that is all I could do- move slow while the pain got worse. I was initially was diagnosed with Lupus, but then properly diagnosed with FMS (Rheumatologist), then CFS, had Mitral Valve Prolapse, diagnosed with Exercise Induced Asthma, Migraine Headaches (which became more frequent), and chronic hand issues. In the morning, I couldn't feel heat/cold/control them properly (accidentally squeeze too hard while hold my children's hands, for example, get burned washing my hands---couldn't tell how hot the water was...). Now, going swimming was torture (used to love it); getting in a cold pool HURT. No one understood, least of all my husband, but my children needed me to function. Sometimes I coped better than others, but avoided discussing it. I start doing research. In the 1st year, I had already completely switched our diets to Organic Foods, didn't buy processed foods, and cooked from scratch. My son had childhood Epilepsy, too, so I began to naturally treat us both. There was constant stress in the marriage (we weren't suited to one another- old opposites attracting situation), financial pressures, my son's illness, and then my health issues. I chose to homeschool my children (special needs son & gifted daughter). So, after 3 years taking prescription drugs, having reactions, developing drug allergies, and finding that absolutely nothing worked if I could even tolerate it. I asked for a Nordic Trak, and went to town on it. Then, joined the gym, and worked out regularly. Sure, pain all the time, but what else could I do? The better shape I was in, the more function I had physically, then just had to cope (no prescription drugs at all). I took vitamins, supplements, continued to workout, and eat organically. Soon, I found that if I could physically tire myself out enough, that I could sleep for 10 hours. If I was able to sleep for 10 hours, then I felt like I had actually gotten some sleep. In the morning, it took 1-2 hours for me to becoming functional. During those first hour (s), I couldn't type with my hands, do anything that required fine motor skills, my balance was off, couldn't effectively communicate, moved very slowly, and my buddy-pain was at its worst. As the years passed, I found that the only way I could function reasonably well was if I was in top physical condition. So, working out became a painful part of what I had to do regularly to stay functioning. The beginning of each workout was brutal. I called it the BURN. It took often a torturous 30 minutes to get through that BURN. Soon, the workouts increased in length. The longer I worked out, the shorter the BURN. So, by the time I was in my late 30's, divorced & single mother & full time job, I was working out 2-3 hours/day. That included intense calisthenics/isometrics and speed walking on a rocky beach. Then, I met and married my 2nd husband. Within the first 2 years, we kept up those speed walks, but the other workouts went by the wayside (full time employment & marriage---time limits). My children were also almost grown, in school, too (son outgrew his Epilepsy at age 12). The speed walks continued, and we began camping & hiking. These were 5-10 miles. At times, we would hike 15 miles in a day. We were regularly walking together until just a little over a year ago. Then, life, work, and other priorities got in the way. By November of 2008, I wasn't out of shape, but not nearly as fit, and had gained 25 pounds (beautiful wardrobe with clothes the same size---had been the same weight for many years---MAJOR PROBLEM as I couldn't afford to buy any new clothes. Since we were both self-employed, my mornings spent sleeping in weren't a problem for me (just for him). Oh, but then all my health issues became worse, too. I stopped using sugar completely. I also stopped drinking milk. Sure, I lost weight, and fast, too. I am very stubborn and my pain tolerance grew in leaps and bounds over the years. It probably helped (sounds strange put that way) that I am now allergic to all Narcotic Painkillers (the last two surgeries were a real drag). A few months ago, I was down to my normal weight, back into my clothing, but still felt like I had taken many steps back with my health. I passed a Kidney Stone, my blood pressure dramatically dropped (95/55 from 110/60), and I had a "scary blue leg" incident. I was relaxing in the jetted tub, outdoors on our deck, when I looked down at my legs, and they turned blue (like they were horribly bruised) before my eyes. They were blue and bruised looking from the hips down to the ankles, and the knees were the worst. It looked like someone took a bat to them. They were black/blue. It looked like my veins were bursting! I showed my horrified husband, and then began to lift them, rub them, and mentally contemplated what could have caused this, was it permanent, and should I call 911?! I took a deep breath, and began to think about the possible explanation. As I rubbed them, my heart was beating faster, and I believe that is what helped the circulation to improve, and the color to return to my legs! It happened gradually, but it took almost an hour for my knees to recover. I got online, did research, called a few knowledgeable contacts I have & determined I had a Potassium & possibly Magnesium deficiency. Then, I met another HTer who gave me some critical information that has made an incredible difference in my life.

I avoid SUGAR, all sugars, all trace sugars, and hidden sugars... No cheating at all!
Limit Fructose carefully
Eat very little Nightshades
Limit my dairy
Eat extremely limited amounts of simple carbs of any kind & AVOID most of them.
Have had to increase my complex carbs (kept losing weight until I did)
Increased my protein intake
Take good vitamins, added more salt to my diet, and try to eat a banana a day
Wear darkly tinted glasses (have very few Migraines since I got them 5 years ago)
Do not drink Alcohol (it has been almost 6 years)

At the age of 45, I now can get up at 8am, am a bit slow for maybe 10 minutes, sleep much better (7 or 8 hours is fine), feel tremendously better (pain level has dramatically lessoned), and am physically far more functional (no burn when I hike or speed walk). I am on no meds, and feel better than I have since the age of 28. I can go on a 5 mile hike any day of the week, work in my garden, and require less sleep. Yes, am understanding the triggers more. When I tested that theory, I was convinced 100% of it. I feel like I have a much more normal life, now!


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## ChristieAcres (Apr 11, 2009)

There was a direct question I forgot to answer. What happened prior to the onset of FMS? My son was 7 months old when he became seriously ill, after an allergic reaction to Penicillin. He also had non-stop ear infections, and his immune system soon couldn't fight anything. Poor little Rob only had one two-week period without illness. He was Epileptic, but it took a few years before he was properly diagnosed. He cried constantly, and very loud, was up constantly during the nights, and my husband wouldn't help take care of him. His response was to work longer hours, too. I was sleep deprived, stress through the roof, had my young daughter to care for, also, no car to go anywhere in, stayed home, and cared for our children. My immune system took a nose dive, and I soon caught everything my son had. For the first time in my life, I had Strep Throat, Thrush, constant Yeast Infections, Flu's, Colds, and after a year of this? That morning, I awoke with FMS.


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## jamala (May 4, 2007)

Just read a book Iodine why you need it, why you can't live without it. It talks about using iodine tablets for treatment of fibromyolgia as well as other things


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## ChristieAcres (Apr 11, 2009)

My husband purchased sea salt with Iodine in it, and it is that type of salt that I am using and had to increase. So, since I have a higher salt intake, I am getting more Iodine, but I will be doing research to determine how much Iodine is recommended for FMS.


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## ChristieAcres (Apr 11, 2009)

The Salt I use is:

Redmond Real Salt which is Natural, no heat processing or preservatives, and naturally contains Iodine (10% of FDA Daily Values- if that means anything). Now, important to note here, that it is NOT a source of Dietary Iodine. So, if your regimen includes taking Iodine Tablets, this doesn't change that. We can get Iodine in numerous other sources, but my understanding is that Natural Salt contains it, along with over 50 trace minerals. This is not to be confused with "Iodized" Salt, which it ISN'T. It is also Kosher.

Redmond Trading Company, L.C.
Heber City UT 84032
1-800-367-7258
www.realsalt.com

I hope this helps, at least with finding salt


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