Anyone Ever Diagnosed With Fibromyalgia?

[Fiddle-Faddle]

I have a friend who is a physiatrist working at a pain management clinic. I'm sure they see a ton of fibromyalgia patients--and I don't think she knows about the link between gluten and fibromyalgia. She is a very bright and caring person, and I thought if I could provide her with 1) relevant links and 2) YOUR stories of your fibromyalgia symptoms alleviated by the gluten-free diet, that would give her something to go on so that she could suggest the gluten-free diet to her fibro patients and maybe even give them links and whatever other info you guys might be able to suggest.

I even thought that, if it's okay iwth you guys, maybe I'd even print out this thread for her--if anyone posts! (Please post!)

Thanks!

[dionnek]

I have a good website that shows the link, but I don't have it here (it's at work), so I will look it up tomorrow and post it for you. I went to a rhuematologist who thinks I have fibro, but after reading more about it I'm not convinced, however, there is some evidence that the gluten-free diet helps with some of the symptoms. My boss has fibro so I had forwarded it to him to try, since he's tried everything else and gotten no relief for his pain.

[i canary]

I can give you a personal experience:

I was diagnosed with fibro 5 years ago. I was pretty much bedridden until I went gluten free. After three days of going gluten free I was out of bed and walking around. It was amazing. My pain levels decreased like 90%.

By the way the doctor who diagnosed me didn't mention gluten or avoiding foods that cause pain. I went gluten free because I was diagnosed with Celiac. It was a wonderful side effect.

[mandyann]

I've been diagnosed with fibro by my osteopath. I have been gluten free for 6 weeks now after a positive result on the Celiac blood panel.My symtoms are getting better but I'm still not feeling great. My symptoms are all in my muscles and include migraines, I have very few stomach issues. I do know that it took me 8 weeks last spring on a gluten free diet before I started to feel better and I did have three days where I felt great (then I went back on gluten for the testing). I did see a physiatrist last spring and she didn't seem interested in my thoughts that the pain was caused by something I was eating. I hope this helps, let me know if you have any more questions. I'd be happy to share my story, although I'm still a work in progress.

[powderprincess]

I went to a rhumatologist for a concern about Raynaud's syndrome many years ago. Then the Dr. said I had fibromyalgia, too, which can be related. I wasn't looking to be diagnosed and didn't really know what it was. My joints hurt when it rains or is going to rain ever since I can remember, so I guess she thought that had something to do with it (I thought it was just pressure changes?). I also said I was tired all the time.

Honestly, I didn't feel confident she knew what she was doing and I thought she was just a little too drug happy, however, I feel MUCH more alert and less tired. That is a huge improvement.

My joints still hurt when it is going to rain, but maybe not quite as bad. This will be my first winter being gluten free so we'll see if I have better circulation in my hands.

I am certainly a work in progess, too. I think we all are

[Guest nini]

I was dx'ed with Fibromyalgia years before my Celiac dx. I was taking quite a few prescriptions for it and recieving electroceutical muscle stim treatments and was still in pain. After going gluten-free I was able to get rid of all but one of my prescriptions and that one I've cut down to practically nothing... I definitely thing there is a correlation between going gluten-free and aleviating my fibro symptoms.

[Guhlia]

I was diagnosed with fibro two months before I was diagnosed with Celiac. I had a newborn baby who I could hardly lift and I spent most of my days in bed because I was in so much pain. I was on Cymbalta, muscle relaxers, and pain killers for the pain and none of them were helping. After about 8 months on the gluten free diet, 95% of my "fibro" issues have resolved themselves and my doctor renigged the diagnosis. Phew.

[Judyin Philly]

Hi Fiddle

was dx'd with fibro 10 years ago and celiac disease 16 months.

great improvement on the fibro issues with the gluten-free diet.

swimming is a wonderful help also.

over in the daily strength forum there are what they call communities where there is alot of info and the people can talk to each other and it lists the treatments people have tried and what has helped.

I'll post this now and then put a cut and paste of the other forum if you would like me too.

I've found the gluten-free diet and zoloft at only 25 mgs (not really a therapudic dose) has really helped also.

judy in philly

[georgie]

My Fibro disappeared after treating my low Thyroid with Armour whole natural meds. Link is at the bottom - the web site with all the info. As low Thyroid can be autoimmune also - it can be linked to people with Celiac. Many Drs don't know that blood test ranges have been changed and that the TSH is not the only test for Thyroid. My TSH was always normal. That is how my Hypo Thyroid got missed for 30 years by 8 Drs. No one thought to test my Thyroid Antibodies.

[Ursa Major]

Hi Alison,

I had 'fibro' symptoms from the age of three, terrible 'growing pains' in my legs, backaches, headaches, awful muscle and joint pain, chest pains, etc. Throughout my life the pain got worse and worse. Finally, in March of 2000 I was diagnosed with fibromyalgia. From the summer of 2000 until the middle of last October, I was on codeine contin twice a day. It is 12 hour release, meaning I was on codeine 24 hours a day. I was also prescribed a muscle relaxant, but stopped taking it, because it made me feel lousy (one thing it did, is make my heart palpitations much worse).

I took 50 mg of the codeine contin in the morning and often 100 mg at night, to be able to sleep. The 50 mg in the morning really just took the edge off the pain, but I felt I was too 'out of it' on 100 mg to drive, and my freedom was more important than being painfree. Often I had to supplement with extra strength Tylenol, when the pain got so bad (despite the codeine), that I couldn't function.

I had chronic, unrelenting, watery diarrhea for six months straight last summer (no, not a day's relief from May to October).

At the beginning of October, after being doubled up with stomach cramps from eating a slice of rye bread, suddenly a 'light bulb' went off in my head, I went on the Internet and looked up celiac disease. And all my 'fibromyalgia' symptoms fit!

I stopped eating gluten that afternoon. By the next day, the diarrhea had stopped. The day after that, the awful back pain started getting better. Every day my pains got less. When after a couple of weeks I found a link on lectins, and realized I react to these foods, I stopped eating all of them, and by the middle of October, I was off ALL painkillers!

I was virtually pain free (in comparison to before, anyway), for three months, until the muscle pains (not the joint pains) were slowly coming back. I doubted my celiac disease self diagnosis and ate a big piece of pizza. By the next day I had diarrhea, and joint and backpain. So, it had to be something in addition to gluten!

Then somebody posted a link on salicylates. I checked it out, and knew there was a connection. I was just hoping it was either the lectins OR the salicylates! I didn't think I could cope with eliminating both.

So, I eliminated salicylates as well. And magically, all the pain went away again.

A month later I challenged several foods. First was rice, I really enjoyed that supper! Well, I wasn't so happy the next day. I had horrible joint and backpain, as well as stomach cramps and diarrhea, and my knees and ankles were buckling on the stairs. My coordination was also terrible, I couldn't think straight, and I was terribly tired.

When I felt better from trying the rice, I tried some scrambled eggs. I got the same symptoms as with the rice, except that I slept until 3:00 PM the next day (I went to bed, feeling totally out of it at 10:00 PM the previous night). I thought my clock must have stopped! But no, the eggs were acting on me like a drug, I guess.

I tried some yogourt, and it gave me a stomach ache, and made me ache.

So, I knew lectins were out for sure. I had eliminated the nightshades four years before that, after they were identified to be a problem in intolerance testing. Potatoes cause gastrointestinal problems (including diarrhea), tomatoes cause migraines, peppers cause ugly pus-filled pimpled on my face, and I haven't had the courage to try what eggplant will do (and I don't like it anyway).

So, I tried salicylates. I went to the pharmacy, and the pharmacist (who is the owner) gave me six children's chewable Aspirin (he didn't have an opened container of adult Aspirin, and since I can't take Aspirin, it's always made me feel worse, I didn't want to buy any). I ate those one Saturday afternoon (of course, they are pure salicylic acid). They burned my tongue as I was chewing, but stupidly I swallowed them anyway, which gave me a very sore throat, that lasted several days.

I also (for good measure) ate an orange, some grapes, sucked a mint, ate a teaspoon of honey and some almonds (all foods high in salicylates).

By the evening I didn't feel too bad, just had a stomachache. I felt rather foolish, thinking that I must have been wrong, even though I felt so sure that salicylates were a problem.

I woke up the next morning feeling like my whole body was on fire! My skin was aching so badly, that nobody could touch me (actually, my sheets touching my skin made it ache). All my muscles were just screaming with pain, especially my forearms. It was pure torture. I realized that I just wasn't used to it anymore, that was the way I used to feel ALL THE TIME (plus the joint and back pain)!

I had to take codeine for three days, and didn't get to church that day, I was too sick.

I know now that my fibromyalgia had been caused by food intolerances, which I've had all my life. No doctor would ever look at me as a whole, rather than the separate symptoms. I was told things like, "maybe you need to take antidepressants", or "it's psychological", or "you have a low pain threshhold, there is nothing I can do for you, you just have to live with the pain". Nobody ever suggested trying an elimination diet!

My diet is now very limited. I can't eat any grains, eggs, dairy, nightshades, legumes, herbs, spices, most fruits (I can only eat peeled pears, and the occasional golden delicious apple), most oils (the only one I've got left is cold-pressed sunflower oil), honey, most vegetables, most starches (I can only tolerate buckwheat once in a while), pork (other meats are okay) and others. The only beverages I can drink are water and chamomile tea. All other teas (including fruit and herbal teas) are high in salicylates, as is coffee. Thankfully, maple syrup is okay as a sweetener. Limes are okay if I don't have more than one a day. The only seasoning I can use is sea salt.

But it is worth it. Because the fibromyalgia is cured as long as I stick to my diet! I still have a stash of codeine. But I rarely need to use one (maybe one a month or so), only when I get glutened, or slip up on my diet. Like when I gave in to temptation and ate an orange the other day. Within hours that burning pain in my arm was back!

[Fiddle-Faddle]

Judy--thanks, I would love that!

Ursula, just reading about your experiences makes my body ache! I'm so glad you found the answers, and I'll be especially interested to see what my friend makes of your story. She might be especially interested in you--her middle son is an Aspie.

[dionnek]

Open Original Shared Link

Open Original Shared Link

These are 2 links I've found

[Fiddle-Faddle]

Open Original Shared Link

Open Original Shared Link

These are 2 links I've found

Thank you, Dionne! These are a great start!

[Judyin Philly]

hi Fiddle--

Open Original Shared Link

Here is the link i promised.

I forgot ..sorry.

this link will take you to the 'about us' so she can see who started the forum and why.

then from the home page she can go into the 'fibro' one

hope it helps her.

let me know what she thinks. good luck

judy

[maribeth]

You know I never even connected the 2. I've had FM for many years. Had days where I could hardly walk and it took everything for me to get out of bed. Carrying a bag of potatoes hurt my muscles and caused my neck muscles to ache which in turn gave me a violent headache and the brain fogs where something else. I was diagnosed with celiac disease a few months ago and went on the gluten free diet a couple of weeks ago and feel much better. The muscle aches aren't as bad and I'm not waking up in the nite with a stiff neck and pain. I can walk better altho if I've been on my feet for a very long time they ache. I invested in a good pair of orthopedic shoes which have also helped. Thanks for showing that the 2 are connected. Having to go without a few foods is well worth it when I realize how much better I feel. Beth

[marciab]

I was diagnosed with FM and CFS 16 years ago and had noticed some improvement in my FM pain after adding salmon to my diet years ago. However, since going gluten and other food sensitivity free, I am hardly ever in pain. Or stiff.

The pain I am having nowadays is from overdoing it after all of those years laying around.

[Fiddle-Faddle]

Thanks so much for the link, Judy. I wonder if the reason I never developed fibro to begin with (at least, not yet, knock on wood!) is that I swim and go to the chiropractor anyway! And now the gluten-free diet....

I checked out the fibro threads on your dailystrength board and was very surprised that I couldn't find the gluten-free diet mentioned anywhere. Did I just miss it? Or do most of the posters there not know anything about it?

Maybe you guys need Ursula on that one!

[lindalee]

Before I realized I had Celiac, my muscles used to ache all the time and I would soak in an epson salt bath every night. That was what helped me. I have not had to do that since gluten free except that it makes me relax now. Gotta remember to do it more now whereas then I had to for relief.

[Ursa Major]

Maybe you guys need Ursula on that one!

No way, I am not going there. I used to be a member of a fibromyalgia board for several years (very nice people, by the way, even though most of them couldn't spell if their life depended on it ). After finding out about celiac disease, and my other intolerances, I posted there, thinking people would be happy to possibly have the choice of giving up some of their foods, rather than taking painkillers. I WAS COMPLETELY IGNORED.

They had zero interest. Most people would rather take pain meds, have surgery and be miserable, than give up their favourite food. Only if a doctor will officially tell them to will they do it. Do an elimination diet because somebody says it might work? Forget it! Some of them are on a disability pension. What if they get cured? They'd have to go back to work!

I find that a lot of people here have the courage to do an elimination diet to get better. But there are thousands of people here who never post at all. I don't know what they do, and if they're willing to give up more foods than just gluten. Who knows.

I don't mind if somebody copies some of the things I say and posts them on boards like that. But I find that in all the boards I've been on previously, I'd get either bullied or any advice that didn't suit them would get ignored. This is the first board ever that I actually really like, and feel comfortable with.

[Mtndog]

Ursula- I've been thinking a lot about you lately because my fibro symptoms have ben through the roof.

Given your limited diet, I was wondering if you could give me a sample of what you eat for breakfast, lunch, dinner and snacks. I'm interested into looking further into this.

[barbara3675]

This could be too little, too late, but my story is very similar. I was diagnosed with fibro at the age of 58 and then found to be gluten intolerant a year and a half later. The fibro symptoms are much better since going gluten-free. I take a pretty good dose of magnesium with malic acid which was recommended by my health food store owner who has celiac disease, but he suggested it for the fibro. I also take Mobic (a prescription anti-inflammitory) for the fibro, but I am wondering if maybe I could start slacking off on that. I have arthritis too as I have been taking glucosamine for years and when I ran out recently, I thought I might just try doing without it, but the pain in my shoulder joints returned. The pain of arthritis is different than fibro, both bad, but different. I still work lots of days and so we do what we have to to keep going. I am grateful that I can keep going as I have at the age of 61. I have very full days. Barbara

[georgie]

No way, I am not going there. I used to be a member of a fibromyalgia board for several years (very nice people, by the way, even though most of them couldn't spell if their life depended on it rolleyes.gif ). After finding out about celiac disease, and my other intolerances, I posted there, thinking people would be happy to possibly have the choice of giving up some of their foods, rather than taking painkillers. I WAS COMPLETELY IGNORED.

I know ! I joined a Fibro yahoo group and I can't believe it ! People that so much in pain but just taking more and more pain meds and narcotics. When I tried to post about the Fibro & Thyroid connection I was moderated off ! Many on the List are on Synthroid which is proven not to work that well - but refuse to listen to alternative natural Thyroid meds and adrenal support.Couldn't even mention Celiac ! Lots have IBS, vitamin defiicencies- all the symptoms that we know sound a bit likely and warrant further testing.

[mamaw]

I was dx'd over 35 years ago before it was really ever mentioned much.... It seems the medical world goes through phases ie: gallbladder surgerywas a big thing here in the 70's.

My complaints were much like all the previous posters along with similar meds.I really never got relief until I started the gluten-free diet & finally found a doctor that would treat my thyroid.... I have very few times now that I can't move or get out of bed but before I had many weeks & months of bedridden days....

I have a friend that will not consider a gluten-free diet but she is almost totally bedridden with fibro... She will only take her drugs which are not helping. She stated if the medical field don't know about gluten-free helping fibro then it just isn't so.... My quiet thought is : then you will have to suffer......

mamaw

[mamaw]

Dionnek

I just wanted to thank you for the link on neurotoxins. That is very very interesting. Now I wonder if I can find a doctor close to me!!!!!! I have printed out all 78 pages to show a few doctors.... At one point a doctor had told me that he thought alot of my problems come from when I was a child. I was in bed for over 30 days with the Hong Kong Flu, back in the 50's

thanks

mamaw

[barbara3675]

Gosh, my older brain sure wasn't in full gear here when I wrote earlier. I also have a thyroid condition for which I take Synthroid. I guess I am a textbook case. So, it is dx/fibro, dx thyroid, and then dx gluten intolerant---I have a gene as diagnosed through Enterolab. I still struggle with the fibro at times, but not nearly as much as before. Barbara