Do any of you lovely, connected folks have fibromyalgia or CFS?
I am searching for a positive online community for fibro patients, and it's been pretty hit or miss so far, so I thought I would ask here as I trust your opinions so much.
**now back to regular programming**
Luxcat, I have fibromyalgia and would LOVE to find a positive online community! I only have one friend with fibro (and she's a hypochondric, unfortunately, so it's hard to even have a conversation with her about it) and it's so difficult to find people to talk to who really understand what it's like. If anyone knows of one, I'd like to hear about it, too!!
Just a note to ponder...
I was diagnosed with fibromyalgia a few years back...along with a host of other ailments. Two years ago I was bed-ridden most of the time and couldn't stand for more than a few minutes without horrible pain in all joints of my body. Quite by a fluke, I saw info on TV about gluten/wheat-free eating and decided to try it...couldn't hurt I supposed. I went cold turkey on the diet...cut out everything with wheat and gluten. Long story short, in 7 days my pains (that I had had all of my life) began to disappear...this freaked me out! I was stomping around the house like a mad-woman, TRYING to feel the pain I'd always had! Fast forward...two years later I am pain-free and the 2 page list of symptoms I, again, had all my life, are GONE! I hike routinely now and have no symptoms. My doctor says I am crazy...so I fired him :) Come to find out, everyone in my family has some form of Celiac's (although we all test "negative") and all that have gone wheat/gluten free are better and/or healing now...coincidently, all were diagnosed with fibromyalgia. This may or may not help you, but it may be worth a shot...it was for me because I got my life (and health) back :) I call it a miracle.
Two of my friends have also tried the diet and are free from their pain as well...they had also been diagnosed with fibromyalgia.
This is a pretty good board for FM: http://www.prohealth.com/me-cfs/blog/boardhome.cfm
This one is better for CFS: http://www.phoenixrising.me/forums/forum.php
@ luxcat - I've heard of people who have gone on an anti candida diet (no gluten in it as well so it would be gluten free) who have been "cured" of all sorts of ailments, including fibromyalgia. That would support ArtGal's experience. There's an old thread I might suggest you take a look at - decluttering diet or something like that where we talk about diet and how it affects you. Best of wishes to you.
I have that diagnosis for 20 years now, and have been researching the topic in various languages since then, and even more since we got our PC at home.
3 years ago i came upon some research results (a webmed abstract) showing a direct correlation to Vit D levels in the blood and the frequency of complaints/ symptoms among patients diagnosed with fibromylgia.
The more i delved into that, the more i found that it was also true for me. I certainly felt better in the summer and fall of every year.
Some docs here attribute "spring fever" to the depleted levels of Vitamin D by the time spring arrives.
If you can, get your Vit D level in your blood checked, if low, consult w your doc on taking D3 vitamin supplements.
Hope it helps you. (it helped me)
Despite my research, i was not aware of the gluten-free diet and its effect on fibromyalgia, but that too might play into it, afterall, if you have trouble digesting something, it is bound to affect your entire metabolism.
luxcat, thanks for bringing this up, and fredsmith, thanks for the links. I've had fibromyalgia for over 20 years now, CFS for over 40. I'm currently exploring a possible diagnosis of gluten intolerance.
I was very recently diagnosed with FM, after aching for years. I do take Vitamin D a bit more diligently and am trying to stay consistent with going to the gym, as that's the main place I get aerobic exercise.
I did try gluten-free for a few months (although not for FM treatment). My love of cookies did me in.
These gluten free cookies are yummy:
http://www.amys.com/products/product-result
And lots of recipes for gluten free cookies.
lovely, i just wrote an investigated reply and it disappeared.
and another one disappeared. i don't like this forum.
ninakk, frustrating!
i don't have anything.
but i went gluten-free three weeks ago, as part of a wider thing. a dietary experiment, really.
i don't know if it is the absence of the gluten, the dairy, the meat, the wine, the sugar or the coffee (i was a moderate consumer of all these things).....but i feel better than i have in a long time. and i didn't think i felt all that terrible to start with!
it appears that gluten intolerance and sensitivities are not as black and white as once thought.....there seems to be a wide spectrum of tolerance/intolerance to it. and the range of symptoms is astonishing.
it is certainly an easy enough thing to test out for a few weeks.
regarding gluten intolerance, there was a short documenary on that very topic
yesterday evening on a science programme, turns out that the highly selected (selecting for mutations) wheat that has a self regulation to deter insects is the cause for many more people having a sensitivity or negative reaction to products containing wheat.
those of you who want support, why don't you start a small and closed group somewhere at say yahoo or such? i don't dare post more than this to see whether i'm allowed to now.
Thanks all for your replies! Lucky for me I get along fine with gluten and it does not seem to be a trigger, although I can see for some it might be. Aspertame turned out to be a big flare-induced for me, and I've also given up anything with HFCS in it. I've started small Yahoo groups before (a reading club, once, as a spin-off of another forum I frequented for years) and didn't have much luck. As a founder, one is expected to keep the discussions going until the group grows enough in size to keep itself going, and I just have to say no to that sort of thing right now.
There is a fibromyalgia support group on Facebook:
http://www.facebook.com/pages/Fibromyalgia-Support-Group/100304333690
I've also been diagnosed, although I'm not as bad as many. It runs in my family. We have had great results with Dr. St. Amand's guaifenesin protocol. There is also a really active forum. I know that Dr. St. Amand has found that almost half his patients are also very sensitive to sugar and he recommends a low-sugar (almost Atkins-like) diet for them. Not sure about the gluten, although a lot of my favourite gluten-containing foods are also high in sugar.
My blood tests were negative for Celiac, they only found it on an intestinal biopsy. I had a gene test done and it showed that I have genes from both my parents. They both deny it though-their blood tests were negative. My mom has Fibro and my Dad has not tolerated wheat since childhood, he denies it though. I am on the weird border of CFS and adrenal fatigue. I have been treated for adrenal fatigue for years. Much better though since gluten and dairy free.
I recently had a massage from someone(also a fibro patient) who espouses Dr St Amand's theories. He is local to me. I looked it up and decided it was not for me, although I don't deny it might work.
Thanks to Conny's post I am now reading info on how gluten issues may be related to modifed grains. Interesting!
We have a friend who is gluten-intolerant (don't know if she's been tested for Celiac) and she and her DH were telling us abrout the Modified grains. Seems they have been developed to have more protein, which seems to be the problem for some folks.
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