I Need A Crash Course In Fibromyalgia.....

[kbtoyssni]

I know this is an old thread, but I just happened to stumble across it and thought I'd share my story. I was diagnosed with FMS in July and I figured out I had celiac disease by doing an elimination diet. One doctor flat out said there's no way celiac disease and FMS are related, but about 15 minutes after I eat gluten I get so tired and I start to hurt all over. After about a week of being gluten-free, my FMS symptoms have virtually disappeared. gluten-free is a miracle for me!

[Eliza13]

Well said Cdford....

Reminds me of slow and steady wins the race!

Patience and small improvements will add up over the months. I guess it is important to enjoy the daily improvements rather than think of the elusive "one year" healing time. If I stop to think of how I have improved on the gluten-free diet (even though I have yo-yoed), I no longer have knee pain and my distention has really gone down. Sometimes it is hard to miss the improvements, but as a yo-yoer I have seen a difference in how I feel when gluten-free vs. not gluten-free. I'm also noticing that my hair is not falling out as much, my face is less dry, and my feet only swell when I have had gluten. When I eat gluten my mouth becomes very dry and I have also discovered that I now have a sex drive, which had been virtually non-existant.

ABOVE PARAGRAPH IS POORLY ORGANIZED-- SORRY-- TOO LAZY LOL

[cdford]

I am glad to see that this post is still helping folks. I think the timing was good for it to be reopened. With all that has been going on in my life this last week or so, I needed to see my own post again! It is also getting on toward winter when our pain levels will begin to rise. That can cause us to forget how well we did during the summer months. Thanks to kbtoyssni for finding it for us.

[julie5914]

I have not been dx with FMS thank goodness, but I have pain in the following places, where my doctor touched and said these are the places gluten hits:

- right shoulder blade towards middle of back

- low back, sacriotic nerve

- outside of hip and legs

Each of these places are where I have chronic pain and she hit them right on the nail. Is this where others have pain?

[tiredofdoctors]

Reflex Sympathetic Dystrophy is a condition in which they sympathetic nervous system goes into "hyperload". It really isn't the same as fibromyalgia. The earliest written cases of RSD were during the Civil War -- it was known then as "Shoulder/Hand Syndrome". Soldiers who were shot in the shoulder would have this irretractible pain in their arm and hand.

Your friend should really go to a neurologist who will listen to her. I have had patients who have had this, and it is REALLY painful. In addition, RSD has a tendency to travel UP to the brain from the affected limb. This has been recorded by using PET scans in patients who have RSD. Once it reaches the Thalamus of the brain, it can cause all four extremities to have the same type of pain. It is then called Thalamic Syndrome, and is irreversible. Getting control of this condition is really important, and with the right intervention, is curable.

[Ursa Major]

I just found this forum today, did a search for fibromyalgia and found this thread. I've had fibromyalgia from about the age of five (I am 52 now), starting with awful muscle pain and back pain by the time I was eight. After being told that it was 'all in my head', or there's nothing that can be done for me, and that I just have a low pain threshold, I was diagnosed in March 2000. The pain was getting worse and worse, I've had no energy at all, especially after having the shingles in 2001, my ankles were swelling by nighttime every day. I've also had asthma, migraines and psoriasis (or so I thought) all my life, especially on my scalp, face and blisters on my hands. I tried to ignore the pain, but five years ago wasn't able to do that any more, because it used up what little energy I had. I then went on Tylenol with codeine. When only three of those every four hours had any effect any more, a rheumatologist prescribed codeine contin (12-hour slow release) twice a day. They are 50 mg pills, but I was allowed to take two if I had to. For the most part they took enough of the pain away so I could sort of function. Sometimes I have to supplement with Tylenol

I've always had bowel problems, bloating, constipation alternating with diarrhea, bowel and stomach cramps, sometimes acid reflux. I've also craved bread, which never made me feel good I realize now.

At the end of May of this year I thought that maybe a bowel and parasite cleanse would be helpful in fixing my bowels. Wow, what a big mistake! Mind you, in the end it may have been a big blessing.

After five days I started having diarrhea, but thought it would go away soon. Within less than a week on that cleanse I thought I was having a heart attack, with excruciating pain in my chest. I was doubled over with the pain, and was hyperventilating so I wouldn't scream. My husband rushed me to the hospital, where they hooked me up to heart monitors. My heart seemed to be fine, so they did a series of tests, and x-rays. The only thing they found was that my potassium was low, and my electrolytes were out of whack.

The doctor declared I had 'just' bowel and stomach cramps and sent me home after five hours. They didn't even do anything to fix the imbalances! I was sick for three weeks with diarrhea so watery it was totally liquid. I didn't eat anything for a week, but other than the pain going away it didn't help. When I saw the homeopath, she told me to eat crackers and drink broth, and she gave me a remedy which stopped the diarrhea. The one weird thing was that, when I didn't eat, ALL my pain went away, and I stopped the codeine for that whole week!

Two weeks later the diarrhea started again, and lasted five weeks, and absolutely nothing could stop it. I was getting weaker and weaker. Every time I ate something, no matter what, I'd run to the bathroom within an hour, and it came right through. I wasn't absorbing my food at all. Finally it got to being one day of diarrhea, one day sort of normal. Two weeks into this I went to the hospital because I was getting seriously dehydrated. My mouth was always dry, no matter how much I drank. The doctor treated it like a joke. He did take a stool sample, which tested negative for everything that would normally cause diarrhea like that.

My doctor ordered a series of tests, which also showed nothing (both blood tests and stool samples). I asked her about celiac, but she said that would come last, if everything else showed up negative.

Three weeks ago the terrible stomach ache started. It was so bad I couldn't wear a bra. And then another one of those awful attacks. Only worse this time. I seriously thought I was going to die. But I didn't bother calling 911, since they didn't help me at all last time. I just waited it out on the couch.

Then, two weeks ago Saturday Oct. 1st, my stomach ache wasn't too bad, I ate a piece of rye bread, and within an hour I was in agony again! So, I finally looked up Celiac Disease on the Internet. What an eye opener! I've had the symptoms of gluten intolerance all my life, and now had the symptoms of full blown celiac disease, and the stupid doctors were clueless!

I went totally gluten free that day. Oh, I forgot that over the summer my lower back pain was getting unbearable, despite seeing my chiropractor twice a week. So, within a day the diarrhea stopped, on the second day the backache was improving and five days ago I stopped taking the codeine! Unfortunately, I will have to take it today, because I overdid things these past two days, and got severe asthma because of being exposed to my daughters dog yesterday. That brought the pain back.

But my energy levels are increasing, my ankles don't swell the way they have been, the 'acne' on my face is clearing up, my bowel movements are normal (not floating, either), the pain is decreasing at an amazing rate, the stomach ache is gone and so is the ache in my left side, and I've started losing weight.

And this much improvement after two weeks! It can only get better. I do have other food intolerances. I can't tolerate the nightshade family (potatoes, tomatoes, peppers, eggplant), lactose, msg, and the combination of grain and fruit. I also have Asperger Syndrome (High Functioning Autism) and Tourette syndrome. I hear that Celiac is more common in autistic people.

Okay, I've written a book. I hope anybody will indulge me and read it all. It seems a common thing to be misdiagnosed with everything under the sun by doctors, when all the symptoms point to celiac (don't the doctors know the symptoms?).

I know that putting myself on that diet would make tests come back negative. But I believe the results of avoiding gluten is all the evidence I need. The doctors have messed with me all my life, instead of helping me. I don't need their confirmation!

[ianm]

Ursula, there are a lot of self diagnosed celiacs here and I am one of them. If avoiding certain foods makes you feel better then that is all you really need to know. There is no magic pill for celiac disease.

[Ursa Major]

Ursula, there are a lot of self diagnosed celiacs here and I am one of them. If avoiding certain foods makes you feel better then that is all you really need to know. There is no magic pill for celiac disease.

<{POST_SNAPBACK}>

Hi Ian, thanks for replying. Interesting that you mentioned going on a low-carb diet in your signature. I did that about three years ago, and it helped some. I thought I was hypoglycemic (carbohydrate intolerant). I was close, but not close enough. But of course, it didn't fix a lot.

I have tested positive for an intolerance to the nightshade family (potatoes, tomatoes, peppers, eggplant), lactose, msg and the combination of fruit and grain.

I just realized tonight that the reason I am feeling rotten again is, that last night my husband and I ate out at a restaurant on our way home from visiting our daughter and her husband, and I, unthinkingly, ate gravy! I asked them not to put croutons on the salad (which was good), but forgot about gravy. I guess I'll get smarter as I get used to being on the gluten-free diet. Especially since I will pay for being stupid each time.

I also realized after following somebody's link to this website Open Original Shared Link that I am likely not just gluten, but rather lectin intolerant (which includes gluten). I have never liked rice (it never seemed like something I should eat for some reason), I always felt that dried beans made me feel bad (beyond the gas that most people complain of), peanuts give me a sore throat, soy gives me a bad taste in my mouth and dairy makes me have a lot of mucus and upsets my stomach (even though officially I am only supposed to have a lactose intolerance), even when I take lactaid when having dairy. And of course, the nightshade family belong to the lectin group, too.

That means that I can't have wheat, rye, barley, oats, quinoa, rice, buckwheat, millet, soy flour and corn. And since that amazing Garfava flour I heard of is made from beans, that's out, too. Which flours does that leave? Sorghum, arrowroot, Amaranth, tef (whatever that is) and nut flours. I don't know what you can bake with them! My husband was going to buy me a bread machine, but now I am not sure if that would be any use. I guess I will just eat meat, vegetables, fruit and salad (and since all salad dressings contain things I can't have, I'll have to make my own).

Also, since vinegar is made from grain (and there is no mayonnaise made with apple cider vinegar), I can't have mayonnaise any more either, unless I make it myself.

This is going to be more difficult than I thought! Oh well, it will be worth it in the end.

Ursula