I've been following the gluten free diet for about three and 1/2 months now.

I feel less fibromyalgia pain. The D has stopped. No more gas. Appetite has normalized. I'm finally able to lose weight and I'm excited about that.

My present concern though is neurological. I was given a dx of fibromyalgia 10 years ago. Characterized by fatigue, pain in tender points, and stiffness.

The pain is receding. I have a lot less pain. The fatigue is less, although I never really feel rested....ever.

I'd complained to docs about feeling weakness in my legs, a lack of strength. They had dismissed that as being part of the fibromyalgia and from my weighing too much.

From the research I've done, it sounds like the weakness and lack of strength could be due to the gluten intolerance. That it can actually cause neuromuscular problems. What my question is, has anyone here had similar symptoms, and if so, have these symptoms reversed for you? How long does it take for them to reverse? How much might these symptoms improve?

Also, when I sit for any length of time and then try to get up, I have terrible stiffness and difficulty walking.
Might this resolve over time or am I stuck with it. I can't walk for any length of time which is really making it difficult to get around. Ligaments in the back of my leg also feel like they are trying to freeze up.

Would love to hear from anyone that is dealing with these symptoms or has had them.

Really would appreciate any comments or thoughts on this.
Thanks,

well, I've been gluten-free for three years now, and unfortunately my fibro symptoms haven't completely gone away... They are significantly better than before my dx, but still very sore in the tender spots and widespread muscle fatigue and pain... I take Tramadol daily so that I can cope with the pain. I think I may have other food intolerances like dairy and soy, I've cut out the soy in my diet but I'm not willing to give up dairy (yet)... I may get desparate enough and try to go without dairy, but for now, not willing to do that! One thing that really helps is my tens unit... I got it from my chiropractor, and I can put the electrodes on the areas that are the most tender and it does give me some relief. I think it interrupts the pain signal from the brain at least temporarily.

Susie (love that name, it's my youngest daughter's), have you been tested for ferretin (iron) levels and levels of vitamin D, K, potassium, magnesium and calcium? A deficiency in any of those (more likely a combination) could be causing your weakness. It happened to me when I was anemic, my legs were so weak that many days I couldn't stand up, and had to stay in bed! Have your levels tested, its important.

I've started massage therapy, with a massage therapist who knows how to release those tender points, now that the cause of the fibromyalgia (food intolerances) is gone. My pain is so much less that I don't need pain killers any more (or rarely, anyway). But I wasn't really able to touch certain spots on my legs, shoulders or lower back especially, as they were too sore.

So, last Thursday I went to have my first massage ever. She said that she had rarely seen such knots in muscles, and tense muscles, but that she will be able to get rid of these problems, it just takes a couple of visits (maybe three). She was very gentle (still, it really hurt), but what she did already helped (and we started out with only half an hour). She also gave me some stretching exercises to do, because the muscles in my calves need to be stretched.

I am very hopeful that with the massage, chiropractic, diet and exercise I will improve a lot (maybe even get totally better? But that is probably too much to hope for ).

I had fibro for many, many years. It took about 6 months for things to mostly resolve. It is however the first symptom that comes back when I get glutened. I also noted after many flares this year that the nightshade family would cause similar discomfort but without the brain fog and severe D that I get with gluten. Sublingual B 12 seems to help a bit.

Really do have to reinforce that fibro and the gluten issue do go hand-in-hand. I think that is what tipped it for my DDIL when she suggested that I get tested to see if possibly I should start eating gluten-free. I am nearly 61, have to work pretty much full time, sometimes more and I take lots of medicine. I take Topomax and Verapamil to ward off migraines and Mobic for the fibro. I sure can tell if I miss the Mobic---it is an anti-inflammitory, but not of the classification like the ones that are being taken off the market. In addition I take a lot of magnesium with malic acid which helps a lot with the fibro. The fellow that runs my health food store has celiac disease but is also brilliantly learned. He suggested the magnesium for the fibro. I take a good one and it is expensive. Good thing I can work so I can pay for all this medicine!!!!!!!! Wonder if I could take it easy, if maybe I wouldn't have to take so much????? There are times when I hurt more than others, but I also think it is important to keep moving with fibro, although there is a fine line there...you can overdo it too. People that don't have fibro, just don't get it. It is like having the achy flu sympton, just sometimes worse than others. I think we get used to it. Barbara

Susie--
Wish I had an easy answer for you!! My FM developed about 2-3 years ago... Started with extreme neck/shoulder/back pain...almost like I had had some sort of injury. Over the following months the pain seemed to dissipate from my neck and shoulders and end up being all over pain. I definitely have the points...I hurt all over, knots and fascial adhesions..but when I hit or poke one of those points--Ouch!! Anywho...I have been gluten-free for 14 mos or so..and unfortunately my FM has not really improved. I thank God I don't have it as severely as I could...but it can be very discouraging. I am still exploring other causes for it...something in conjunction with the celiac disease that might be causing it. I did physical therapy, muscle stripping (OUCH OUCH!) and acupuncture...all to no avail. I am trying to take mag/malic acid again...as that is one of the better "treatments" around for FM. I think another good one is stretching. I also feel like my muscles are always tight--almost a "shrinking" feeling... I am just starting to get into Pilates--lots of stretching and lengthening of muscles. I hope that will be a good help for me too. Other than that, I use my heating pads and epsom salt baths a lot Be hopeful--I'd say since you are already noticing improvement--you may be pain free someday! Just be sure to be vigilantly gluten-free. You may be like some here--getting gluten will bring back the pain and symptoms for a period of time, like it you have gluten on accident...

my FM and CFS seem to be worse

Betty, check out my links on lectins and salicylates (in my signature), that's what's causing most of my fibro symptoms (gluten is a lectin, but not the only one by far).