Questions For All Those Who Have Ever Had Fibromyalgia

[nasalady]

I've been gluten free for several weeks now and notice that some of my symptoms (such as brain fog and vertigo) are MUCH improved, but others (chronic fatigue, back and leg pain, leg stiffness, difficulty standing & walking) seem to be worse. I have fibromyalgia (among many other health issues) and that's what I attribute most of those symptoms to.

Of course, I've been glutened a couple of times since going gluten free, because my house is still not 100% gluten free. But I've tried SO hard to be careful; I won't touch the gluten-y foods my husband and kids eat. I tell DH he's in charge of feeding the kids gluten.

I've read that many people on this site have had their fibro go into remission after going gluten free. I'm feeling a bit frustrated, even though I know that it can take literally YEARS to improve significantly. But I have never been very patient in situations like this!

[Del]

I have been gluten-free for eighteen months....I didn't expect my Fibro to improve but it did Dramatically! I'd say it was 85% improved for nine months or so.....in fact the only time I knew I had it was when there was a storm in the area. Even then it was not as bad as before! Also I'd start into a flare....we all know how that feels...and the next day it would be GONE!!!! Normally my flares would last anywhere from three weeks to five months!

We are now in a stormy season and I feel the Fibro almost every day but it's not as bad as it was before! It's mostly PAIN and fibro fog...definitely more tolerable than it was when I was eating gluten.

[Amber M]

I have been gluten-free for eighteen months....I didn't expect my Fibro to improve but it did Dramatically! I'd say it was 85% improved for nine months or so.....in fact the only time I knew I had it was when there was a storm in the area. Even then it was not as bad as before! Also I'd start into a flare....we all know how that feels...and the next day it would be GONE!!!! Normally my flares would last anywhere from three weeks to five months!

We are now in a stormy season and I feel the Fibro almost every day but it's not as bad as it was before! It's mostly PAIN and fibro fog...definitely more tolerable than it was when I was eating gluten.

My Fibro has improved. I've been gluten free for about 5 months now. (except a few accidents here and there) The vertigo is much better. I can walk now without my legs having to be spread out to maintain balance. I guess I didn't even realize that was part of the fibro. I have many neuro symptoms due to gluten ataxia. Things are improving slowly. I seem to take 5 steps foward and then back at times, but when I really think about it, it has really improved as a whole. Looking foward to more improvement over time.

[Del]

I know exactly what you mean about taking one step forward and five steps back!!! What a rollercoaster ride this disease is!!!! After eighteen months there are times when I'm ready to scream but then I do realize how very much I have improved in those eighteen months!!!

[nasalady]

One common theme that strikes me as I read stories in so many threads on this forum is that healing is non-linear; we get a little better, we get a little worse, we get better again....the "rollercoaster ride" that Del was talking about. But in general, there seems to be progress in the positive direction, even if it is slow.

I guess that all of us would probably agree that even if just ONE of our fibro symptoms diminished or went away, the gluten free diet would still be totally worth it! I started this poll because I wanted to find out more about what other people on this forum with fibromyalgia were experiencing....thanks to those who have voted so far (and please feel free to vote if you haven't done so yet!!), and thanks to Del and Amber for sharing details!

This really helps me to feel I'm not alone, and that there is hope for significant improvement in the future.

A Happy (and Healthy) New Year to all!

JoAnn

[Fiddle-Faddle]

I never had a diagnosis of fibro--I was just at the beginning of many consistent-with-fibro symptoms, which all resolved on the gluten-free diet. But I had only had most of those symptoms (joint pain, intestinal symptoms, tiredness, rash, reflux, etc) for a relatively short time. I would think that having those symptoms attack your body for years would result in damage that takes a while to heal.

I've also been reading AliB's posts about candida and gut dysbiosis. I wonder if, in addition to being gluten-free, fibro victims need to be sugar-free and low-carb? I hate to suggest it, as if anyone deserves comfort food, it's fibro victims! But if comfort food is actually helping to cause the problems, it's not much comfort....

And I also think it might be important for fibro victims to rule out Lyme Disease, as the symptoms are identical.

[Del]

Joanne....

You are sooo welcome for my little contribution to this thread!

Happy, Healthy, Blessed New Year to you and yours!!

Del

[nasalady]

I've also been reading AliB's posts about candida and gut dysbiosis. I wonder if, in addition to being gluten-free, fibro victims need to be sugar-free and low-carb? I hate to suggest it, as if anyone deserves comfort food, it's fibro victims! But if comfort food is actually helping to cause the problems, it's not much comfort....

It might explain why I always felt so good on the Atkins diet!

And I also think it might be important for fibro victims to rule out Lyme Disease, as the symptoms are identical.

Well, for me, since I NEVER spend any time out-of-doors, don't have pets, and was born, raised and currently live in California, maybe not.

But it is food for thought....it certainly doesn't hurt to bring it up to your doctor as an alternative possibility.

Thanks!

JoAnn

[Fiddle-Faddle]

Joanne, you might want to pm rachel_24 on this board. She has lived in California all her life, has no pets, and was never aware of a tick bite (let alone any rash)--and she, like a ridiculously high number of people on this board, was definitively diagnosed with Lyme disease.

Besides for an overlap of symptoms, Lyme shares a very important link with celiac disease: both diseases have a history of having been "taught" in med school as being extremely rare, and limited to certain symptoms (like the "bull's-eye rash" for Lyme, which occurs in less than half of those diagnosed, or wasting away, which is a symptom for less than half of celiacs). In addition, most doctors were taught glaring inaccuracies about both (like, Lyme disease only occurs in certain areas (NOT true at all), or celiac disease occurs only in children, who outgrow it (NOT true, as we all know).

AFAIK, I don't have Lyme disease, so I can't speak from personal experience. But the dad of one of my students did, and he was bounced from doctor to doctor for YEARS. They even sent him to a psychiatrist, who asked him why he was "refusing" to get better. It wasn't until he started having seizures that the neurologist said, "well, we've tested you for everything else, we might as well run a Lyme test."

And that's what he had.

But very few doctors even believe in Lyme disease.

You might also want to investigate: www.lymenet.com

Good luck, and happy new year!

[tarnalberry]

I developed fibromyalgia four years after I went gluten free, three years after I went dairy free/soy light. A number of things were tested for (including RA and Lyme), and I'm pretty sure that it's fibro I have. I caught it early (about as early as you can be diagnosed with it), and am almost certain that it was caused by significant, unrelenting stress over the period of a year and a half. Meds have helped me, along with trying to deal with the stressors in a number of ways.

[AliB]

As my name has already been mentioned I will add my five eggs.......!

Amongst other things (Osteo-arthritis, scoliosis, spondylosis, sciatica) my husband has FM. When I had to go gluten-free back in Jan he decided to do it with me (I think he thought I was having special food and didn't want to be left out!!!). We have both been gluten-free for 11 months and I have been on the SCD for 9 months. Although happy to go gluten-free I could not persuade him to join me on the SCD although some of the food I do for him is SCD legal.

His FM (and his mobility in general) has improved. Whereas he usually was in bed for at least 3 - 4 days or more every fortnight, he is much less likely to do that now. I think what I have particularly noticed is the lack of brain-fog and stress. His brain is much clearer (he can now remember how to get to places which is a relief - I used to get tired of having to direct him all the time!). He is a lot happier and much less irritable (hurrah!). He is so much more tolerant of the grandchildren (and me!) and plays with them and is far more likely to go out and about with us all than be stuck in bed all the time.

He still has some issues - he tends to wake in the night and not be able to get back to sleep, and still has some digestive distress at times.

I am sure if I could only persuade him to give up the little dairy he has and the gluten-free carbs and do the SCD with me he could be better even still (for a lot of us I believe that Gluten is only a small part of the jigsaw, and gluten-free foods can sometimes actually make some things worse because they are even higher in carbs than gluten-based foods).

He does have one external indicator of Candida (it is more difficult to show up in Men for fairly obvious reasons, but he has a fungal toe-nail which is a clue). As many of the microbes tend to live in allegiance with each other it may for him not be just Candida that is the issue.

I do wonder about that with 'Lyme' Disease. Although some with Lyme type symptoms do seem to have the Borrelia bacterium, not all do, and some who have it do not appear to have Lyme, so it begs the question, is it the Borrelia, or is it something else, or is it Borrelia in conjunction with something else? Could the Borrelia be contracted through means other than ticks? Dog Saliva? Bird poo? Even other human carriers??

I do wonder though if the fact that someone has the Borrelia bacterium may actually be a red-herring. Many who do not appear to have Borrelia also display with similar symptoms, and that could quite simply be down to Candida and its interaction with any of the hundreds of other microbes that are in our bodies, where the Candida or other microbes are, and what genetic vulnerabilities we carry. My husband is not aware of ever being bitten by a tick and neither do we have any pets.

Going back to Candida, I think a lot with compromised gut flora (including myself after several courses of the dreaded AB's as a child) have difficulty digesting and processing carbohydrates in general, not just gluten-based ones. I have had difficulty with carbs for years and the only two times in my life I felt well was when I was low-carb (you think I would have stuck with it wouldn't you!).

Interestingly, many who follow the SCD have many and varied health issues, yet all of them improve, or even disappear on the diet. It cuts out the sugars, and other di and poly-saccharide carbs that feed pathogens, including Candida and Borrelia and that to me gives some credence that most of our 'Western' diseases are highly likely down to the same thing - gut dysbiosis and an over-abundance of pathogenic microbes.

After all, communities and cultures that are not exposed to the chemicals, pollutants, and the highly processed high-carb, high-sugar 'Western' diet, are generally fit and healthy and do not suffer with the diseases that are pretty unique to our 'Western' lifestyle.

[nasalady]

Joanne, you might want to pm rachel_24 on this board. She has lived in California all her life, has no pets, and was never aware of a tick bite (let alone any rash)--and she, like a ridiculously high number of people on this board, was definitively diagnosed with Lyme disease.

Besides for an overlap of symptoms, Lyme shares a very important link with celiac disease: both diseases have a history of having been "taught" in med school as being extremely rare, and limited to certain symptoms (like the "bull's-eye rash" for Lyme, which occurs in less than half of those diagnosed, or wasting away, which is a symptom for less than half of celiacs). In addition, most doctors were taught glaring inaccuracies about both (like, Lyme disease only occurs in certain areas (NOT true at all), or celiac disease occurs only in children, who outgrow it (NOT true, as we all know).

Oh, I know that Lyme disease can definitely occur in California, especially in Northern CA on the coast. But the incidence in CA is 0.2 per 100,000 as compared with New England where the incidence is on the order of 45 per 100,000. Statistically speaking, it's less likely in CA. As a scientist, I try to research stuff like that.

AFAIK, I don't have Lyme disease, so I can't speak from personal experience. But the dad of one of my students did, and he was bounced from doctor to doctor for YEARS. They even sent him to a psychiatrist, who asked him why he was "refusing" to get better. It wasn't until he started having seizures that the neurologist said, "well, we've tested you for everything else, we might as well run a Lyme test." And that's what he had.

I must say that I am quite convinced at this point that what I have is fibromyalgia. It runs in my family (my sister has it too). My rheumatologist, neurologist, and PCP all concur with the fibromyalgia diagnosis. Some of my fibro symptoms have improved already on the gluten free diet, especially my brain fog, vertigo, and hand tremors. Do Lyme disease symptoms improve on the gluten free diet?? I wouldn't expect that to be the case.

As to all of the symptoms being identical (Lyme disease vs. fibromyalgia), is this actually true? Fibro is sometimes called a "pain amplification" syndrome. In other words, things that would not normally cause pain, or that would normally be slightly uncomfortable, become excruciating. This is known as allodynia.

For me, I began to suspect fibro when I was hospitalized in June for 3 days and when the nurses flushed my IV with saline or even took my blood pressure I had to bite my lip to keep from screaming bloody murder!

Note also that my symptoms had been coming on gradually for years, I just hadn't put two and two together until that hospital stay.

Is this typical with Lyme disease? Pain amplification and gradual onset of symptoms over a period of many years? If so, please let me know!

In any case, I REALLY appreciate your efforts to educate me about Lyme disease, and I will bring Lyme disease up to my doctor as something that needs to be ruled out! Since I've had SO much blood work done in the past several months, it's entirely possible that they did test me for Lyme and it has already been ruled out. But I will ask.

Thanks Fiddle-Faddle!

Happy New Year!

JoAnn

[Fiddle-Faddle]

Do Lyme disease symptoms improve on the gluten free diet??

From what I keep reading, they do, but not all symptoms, and the gluten-free diet is not a cure for Lyme disease. As I understand it, Lyme disease can often cause a non-celiac gluten intolerance that mimics severe celiac in almost every way.

I think fibromyalgia is certainly real--but I believe thatrather than being a stand-alone disease, it is the symptom of something deeper. I really believe that there is always something CAUSING it--and it might be celiac/gluten intolerance, or Lyme disease, or mercury toxicity, or some kind of complicated candida/gut bacteria combination, or something else entirely.

The problem is, all the studies and research on fibro is geared towards finding drugs to treat the unbearable symptoms, which is certainly something that anyone in pain would want, but it doesn't address or look for the root cause.

Anyway, happy and healthy new year to you! I hope you become VERY healthy VERY soon!

[Amber M]

From what I keep reading, they do, but not all symptoms, and the gluten-free diet is not a cure for Lyme disease. As I understand it, Lyme disease can often cause a non-celiac gluten intolerance that mimics severe celiac in almost every way.

I think fibromyalgia is certainly real--but I believe thatrather than being a stand-alone disease, it is the symptom of something deeper. I really believe that there is always something CAUSING it--and it might be celiac/gluten intolerance, or Lyme disease, or mercury toxicity, or some kind of complicated candida/gut bacteria combination, or something else entirely.

The problem is, all the studies and research on fibro is geared towards finding drugs to treat the unbearable symptoms, which is certainly something that anyone in pain would want, but it doesn't address or look for the root cause.

Anyway, happy and healthy new year to you! I hope you become VERY healthy VERY soon!

I agree. I believe there is a deeper cause of fibro. They just haven't figured it out. I think it is a side affect of other conditions like celiac, lyme, and other diseases. The Drug industry would never want us to know that! LOL! I think the medical community is starting to figure it out, at least some of them.

I think I'm going to go ahead and have a Lyme test too. About 5 or 6 years ago, I woke up with a huge bump on my forarm wrist area. It was like an egg size swollen bump with a few other smaller ones (one near it and the other on my jaw. I found the bite in the middle of the large bump. I assumed it was a spider bite during the night. (Yuk) I can not remember if it looked like a "bulls eye" rash or how I felt that week. I just remember it took a week to go away. Now I am wondering. That would mean that a tick got in my house? I think I'll do it though, just in case.

[nasalady]

I developed fibromyalgia four years after I went gluten free, three years after I went dairy free/soy light. A number of things were tested for (including RA and Lyme), and I'm pretty sure that it's fibro I have. I caught it early (about as early as you can be diagnosed with it), and am almost certain that it was caused by significant, unrelenting stress over the period of a year and a half. Meds have helped me, along with trying to deal with the stressors in a number of ways.

Wow! Developing fibro AFTER going gluten free; I hadn't even thought about that possibility!

I have read that stress can trigger the onset of fibro. I'm glad to hear that the meds are helping.

Take care,

JoAnn

[nasalady]

I agree. I believe there is a deeper cause of fibro. They just haven't figured it out. I think it is a side affect of other conditions like celiac, lyme, and other diseases.

Yes, fibro rarely appears by itself but usually in conjunction with one or more autoimmune diseases. The medical community doesn't really understand it very well yet. There is a small but growing section of the medical community which believes that fibro may be an autoimmune disease in its own right, but that is still controversial.

Thanks for the helpful replies, everyone!

[tarnalberry]

Wow! Developing fibro AFTER going gluten free; I hadn't even thought about that possibility!

I have read that stress can trigger the onset of fibro. I'm glad to hear that the meds are helping.

Take care,

JoAnn

There's a book you may find interesting: Why Zebras Don't Get Ulcers. Written for lay people, it is well backed up in it's reference table and sources cited, and easily accessible. It doesn't discuss fibro specifically, but it is very relevant.

There is significant evidence towards at least some subset of fibromyalgia has to do with overextension of the sympathetic nervous system, rundown of the parasympathetic nervous system, and the chemical cascade that results in chronic stress exposure - be it physical, mental, emotional, chemical, or biologic stress. There certainly is no conclusion on anything at the moment, but as far as I can tell, this holds rather true for my case of it.

[sixtytwo]

I am one of those typical people............thyroid, fibromyalgia, migraines and a gluten intolerance. I should be a case study for some doctor as I have it all. The fibro did get better when I went gluten-free and when I get a flare-up, it lasts a much shorter time now. I now, though, am having a terrible time with migraines and just can't figure out what to do. I have been kind of fooling around with the gluten thing but have been really good lately, so just can't figure out what the problem is. Anyone got an idea? Barbara

[happygirl]

There's a book you may find interesting: Why Zebras Don't Get Ulcers. Written for lay people, it is well backed up in it's reference table and sources cited, and easily accessible.

This is a great book - definitely worth the read.

[Fiddle-Faddle]

Two migraine triggers for me were:

1) hormone changes (puberty, and post-childbirth)

2) changes in my glasses prescription: after each child, my eyes somehow became LESS near-sighted--so wearing glasses/contact lenses with too strong a prescription triggered migraines until I got new (weaker) glasses.

Also, I am now careful not to have glaring light hit my eyes directly.

If you are only "fooling around" with the gluten-free thing, and are eating some gluten, that could easily be enough to trigger migraines, though, if you are gluten-intolerant and susceptible to migraines.

[frec]

I also developed fibromyalgia six years after being diagnosed with celiac disease. During those years I had a back injury, I was the sole caregiver for my chronically ill mother, and three members of my family died. Stress can trigger a lot of diseases, and I think it set off my fibromyalgia. I am very fortunate--I work full time and I am fairly active--but I think that is because of the gluten-free diet. It saved me from being worse.

The book sounds interesting--thanks.