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Question For All Those Dx'd With Fibromyalgia

shirleyujest

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shirleyujest Contributor
shirleyujest
Posted

Now that you're celiac disease/GI, have your FM symptoms gone away? Just improved? Do you still think you have FM or was that a false dx.

As you might guess I'm asking because that was dx'd along with SLE. The SLE can be in remission and now I may or may not have FM, guess if my symptoms fade in the next months it will bring that dx into question.

And for those who do have FM, do you believe in the guaifenesin protocol? I was on that medication for several years after being dx'd, and I swore it helped the pain/fatigue even though it has no credibility from scientific research. But then they made the pills really huge and I have a hard time taking them.

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tarnalberry Community Regular
tarnalberry
Posted

I was dx'ed long after I went gluten free (four years or so) and dairy free (three years). I'm firmly convinced that the main trigger for my fibro was chronic, unyielding stress over the course of more than a year. (My boss was trying to get me in trouble.) I don't disbelieve in the guai protocol, but don't strictly believe in it either. A lot of research has come out in recent years highlighting the objective, testable difference in the nervous systems of fibromyalgia patients, particularly their lack of ability to inhibit pain sensations the way that most people do. (I don't mean psychological lack, I mean the spinal chord is supposed to regulate - electrically/chemically - the nerve signals we get from all over the body, and it doesn't do it appropriately in fibromyalgia patients.) So, I strongly feel that finding the right approach (be it meds, therapy, exercise, diet, stress-reduction, or preferably a combination of everything) to improve sleep and decrease stress (emotional/psychologial, chemical/environmental, and physical) on the body is going to be the best route to go. (Of course, finding out what the best way to decrease all those types of stress on the body gets pretty tricky.)

sixtytwo Apprentice
sixtytwo
Posted

For me, it was a fibro diagnosis first and six months later going gluten-free. I think I am doing as well as I am (not great, but good......have flares when I overdo it and get too tired) because of the gluten-free. I also have a thyroid problem. I was on 200 mg. Topomax so I didn't get migraines and have gone completely off that and no headaches. I have had headaches last winter and the doctor said they are "nerve headaches" which are hard to cure and they are not migraines. I am doing better on those too now. Winter is a depressing time for me and summer is so much better. I can get out and golf and walk and that makes such a difference. I live in the very northern most part of Wisconsin and winter is long.

Barbara

Ahorsesoul Enthusiast
Ahorsesoul
Posted

I have Fibromyalgia. I am being treated with Dr Teitelbaum's method with excellent results since July 2003. I have also noticed an improvement with the Fibromyalgia since going gluten free. I think treatment for Fribromyalgia is different for each person. The main point if to start a treatment and keep it up. A lot of times people stop their treatment because it takes so long to see improvement with fibromalgia.

My testimonial about my Fibromyalgia treatment:

Open Original Shared Link

shirleyujest Contributor
shirleyujest
Posted
  • Author

Thank you for sharing your experiences.

Ahorsesoul: Does the Tietelbaum protocol involve guaifenesin. I never heard of that doctor.

Sixtytwo: I've chatted with/gotten to know women from all over the country through the internet, and every one of them struggles with winter. It's tough on the body and the mind. And to think I really want to move to new England ... NY specifically if I can.

Tarnalberry: I'm sorry this happened to you. I wasn't aware of the evidence about the nervous system being different. I guess the guai is more about crystal-type deposits in the muscle and tissue. I don't know why it seems to help me but it does.

tarnalberry Community Regular
tarnalberry
Posted

you can google for the tietelbaum method, but it mostly consists of a number of supplements. ironically, I take quite a few of them - malic acid I think has been the most useful for me, but B vits, calcium, magnesium, CoQ10, NAC and omega-3 (high dose, 8g/day) has also been useful. Oh, and fixing sleep issues (possibly the hardest part! the sleep study I did, though it found nothing conclusive, was well worth it).

You can see an article he wrote on supplements here: Open Original Shared Link

Ahorsesoul Enthusiast
Ahorsesoul
Posted

He's not a fan of Guaifenesin but he does know it works for some people.

Open Original Shared Link

I tried it but I had much better results from Questran.

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