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Just wondering who else here deals with fibromyalgia. I was diagnosed with having fibromyalgia in 2006-ish.  It got so bad that medications weren't helping (Neurontin and Cymbalta), and the ones the doctors would prescribe that did provide some relief I could not take because they made me too tired (Tramadol and Flexeril.)

 

I was diagnosed gluten intolerant last week, and my doctor told me to adhere to a gluten free diet. He also switched my medication to Savella.  I am currently 5 days into the titration pack, as well as 5 days gluten free.  I have already noticed a difference in my pain levels, I'd say so far they are decreased by about half! I am astounded (and very, very happy and relieved!)

 

So who else has fibromyalgia? I'd like to hear your stories. 

 

 

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Welcome Jessica!

I was diagnosed with the set of symptoms known as fibromyalgia seven months after finally being diagnosed with celiac disease. You can read my basic history if you click on my profile.

I have never tolerated medications and was unable to take pain and or SSRIs (they tried savella) to help manage my pain, fatigue and brain fog.

I am on mobile or would type more...but this is extremely important. Do not completely remove gluten from your diet until you have been properly tested...I'll be back with a complete list.

For now eat at least one piece of glutenous bread per day until you can get in for the celiac antibody panel.

Hang in there :)

Edited...just read your signature and wonder why you are calling yourself gluten intolerant. With positive celiac antibodies and your symptom history....you have Celiac Disease.

The complete removal of gluten should improve many of your symptoms, but the fibromyalgia symptoms can take a while or wax/wane. Glad your first few days are going well :)

Edited by GottaSki

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GottaSki ~ Hello. Thanks for your reply. Well, the doctor didn't use the word "Celiac", but he did say "Gluten Intolerant." He also said that the biopsy they took (which was inconclusive) could have been a false positive, but the bloodwork had antibodies.  So I guess I'm a bit confused?

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GottaSki ~ Hello. Thanks for your reply. Well, the doctor didn't use the word "Celiac", but he did say "Gluten Intolerant." He also said that the biopsy they took (which was inconclusive) could have been a false positive, but the bloodwork had antibodies. So I guess I'm a bit confused?

Gotcha.

If you haven't...request a copy of both the procedural and pathology reports....we can help interpret.

Biopsy inconclusive sounds like perhaps the doctor took only one sample of the small intestine, which would mean he is not up to date on proper endoscopic biopsy protocol for celiac disease...unfortunately this is a common occurrence.

Oh...and request written / electronic copies of your blood work .... We can help interpret those too :)

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Ahhh, ok. Thanks, I will see what I can do about getting a copy :)

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Fibro symptoms are almost nil at this point.  It's only when my immune system is going crazy that I get some symptoms back.

 

Colleen

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That's great, Colleen! My Fibro symptoms have become almost nil too, it's been 6 days. I dont know if it's the new med, or gluten free, or both... but either way, I'll take it :)

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BTW, I just requested a copy of my Celiac Panel via online MyChart. I will keep posted and post results here to help decipher. Thanks :)

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BTW, I just requested a copy of my Celiac Panel via online MyChart. I will keep posted and post results here to help decipher. Thanks :)

 

Go ahead and post it as a New Topic.  If someone isn't interested in Fibro, they won't see it to comment.

 

Colleen

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Will do, thanks :)

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