What Is The Deal With Fibromyalgia?

[floridanative]

I got a call from an aquaintance of mine asking me about the gluten free diet. Her Mother was just dx'd with Fibromyalgia and was told she should go on a gluten free diet to help her symptoms. As I understand it, Celiac was not brought up, nor has this person been tested for it. The dr. explained about how gluten was in so many things and suggested a strict gluten free diet. So why in the world should someone try the gluten free diet if they have Fibromyalgia? Is this common? I know it's common for people with Celiac to be misdiagnosed with Fibro but if they really just have Fibro would the gluten-free diet help? Thanks if anyone knows anything about this.

[Jestgar]

Some big proteins (gluten, casein) are thought to be inflammatory in many people. Naturopaths often suggest removing these from the diet (for a long time) to see if it helps. I think the time needed to judge if it's helping or not is 1-2 months.

[Ursa Major]

As far as I am concerned, there is no more such a thing as fibromyalgia than IBS. Both are syndromes, and you get labeled with them when your doctor is clueless, and won't investigate any further.

I was diagnosed with fibromyalgia seven years ago, too. I had the symptoms from the age of three. But if you look at fibro symptoms you'll find that they almost completely match celiac disease symptoms, with symptoms of some other intolerances thrown in.

The combination of eliminating gluten, all other lectins and all foods high in salicylic acid has pretty much cured the fibromyalgia, which I had for fifty years. I am sure that the rest is just irreversible damage from being undiagnosed for so long.

I have not heard of anybody with fibromyalgia who doesn't also have IBS to some degree. An irritable bowel is caused by something, and that fact should never be called a diagnosis in itself.

Rather than just going on a gluten-free diet, this lady should get tested for celiac disease first, and then do an elimination diet to find out what other intolerances she may have, if she tests positive. If she tests negative she may still be intolerant to gluten, and should then try the diet anyway.

[CarlaB]

But if you look at fibro symptoms you'll find that they almost completely match celiac disease symptoms

They almost completely match Lyme Disease symptoms, which also almost completely match celiac disease symptoms. This is why it's a good idea to have your doctor do a differential diagnosis.

I wouldn't accept a fibro diagnosis anymore than I accepted an IBS diagnosis. I kept looking till we found out what was really wrong.

[Teacher1958]

As far as I am concerned, there is no more such a thing as fibromyalgia as IBS. Both are syndromes, and you get labeled with them when your doctor is clueless, and won't investigate any further.

I was diagnosed with fibromyalgia seven years ago, too. I had the symptoms from the age of three. But if you look at fibro symptoms you'll find that they almost completely match celiac disease symptoms, with symptoms of some other intolerances thrown in.

The combination of eliminating gluten, all other lectins and all foods high in salicylic acid has pretty much cured the fibromyalgia, which I had for fifty years. I am sure that the rest is just irreversible damage from being undiagnosed for so long.

I have not heard of anybody with fibromyalgia who doesn't also have IBS to some degree. An irritable bowel is caused by something, and that fact should never be called a diagnosis in itself.

Rather than just going on a gluten-free diet, this lady should get tested for celiac disease first, and then do an elimination diet to find out what other intolerances she may have, if she tests positive. If she tests negative she may still be intolerant to gluten, and should then try the diet anyway.

[Teacher1958]

Ditto here! I feel so badly for all of the people who are suffering out there and have no idea why. I am going to shout my story from the rooftops.

[Nantzie]

I was never diagnosed with anything (my family thought I was just trying to get attention and nobody would babysit my kids so I could go to the doctor), but the pain I had was very similar to people who have fibromyalgia describe.

When I went gluten-free, it went away. Poof! Now I only get it when I'm glutened.

Nancy

[marciab]

Many people use the term Fibromyalgia and CFS interchangebly to describe two different sets of symptoms.

The way I was taught is that Fibromyalgia is pain in the connective tissues (areas near the joints).

And CFS included flulike symptoms like swollen lymph nodes, brain fog, headaches, an array of nuerological symptoms and overwhelming fatigue. Some believe this is related to an upregulated immune system initiated by a virus.

Both of them involve a sleep disorder and IBS. Although most only have a mild form of IBS.

I'm not sure why they stopped differentiating between the two. You can have one set of symptoms and not the other.

I was diagnosed with both. I still have fibro pain in my connective tissues, but it only hurts when touched. OR if I try to do anything that stressing the joints. These are the same areas that go into spasm if you are a weekend warrior.

Most of my nuerological problems and IBS have resolved. And the research on gluten / food intolerances explains that.

I'm still not sure that eliminating gluten / food intolerances will eliminate the swollen lymph nodes, fatigue, brain fog or fibro pain. But I am only 19 months gluten free.

Marcia

[Ursa Major]

Marcia, I had both fibro and CFS plus myofascial pain syndrome. I had chronically swollen, painful lymph nodes, too. My lymph nodes are normal now, unless I eat something wrong. I also had painful, swollen joints and horrible pains in the connective tissues and muscles. It was so bad that I was on codeine 24 hours a day, just to take the edge off. If I would have taken enough to take the pain away I would have been drugged unconscious.

Now I rarely need any painkillers at all. I also had the brainfog, rage attacks, terrible fatigue (which is now being treated as hypothyroid and adrenal fatigue and is getting better), nightmares, trouble sleeping, IBS, rashes and many more.

I sleep well now, no more nightmares (unless glutened), I don't get so angry that I hurt myself any more. But those pressure points still hurt when pressed. I am not sure if they will ever go away.

[marciab]

Marcia, I had both fibro and CFS plus myofascial pain syndrome. I had chronically swollen, painful lymph nodes, too. My lymph nodes are normal now, unless I eat something wrong. I also had painful, swollen joints and horrible pains in the connective tissues and muscles. It was so bad that I was on codeine 24 hours a day, just to take the edge off. If I would have taken enough to take the pain away I would have been drugged unconscious.

Now I rarely need any painkillers at all. I also had the brainfog, rage attacks, terrible fatigue (which is now being treated as hypothyroid and adrenal fatigue and is getting better), nightmares, trouble sleeping, IBS, rashes and many more.

I sleep well now, no more nightmares (unless glutened), I don't get so angry that I hurt myself any more. But those pressure points still hurt when pressed. I am not sure if they will ever go away.

Ursula,

Thanks ... I didn't realize you and I had so many of the same symptoms. I guess it is time for me to look into what foods are causing my lymph nodes to swell. And into what thyroid / adrenal problems are behind the fatigue. These symptoms have improved, so I keep hoping I am on the right track.

Can swollen lymph nodes be caused by environmental allergies ?

Did you have high viral titers ? And do you know if that actually means anything other than your immune system is over active ??? I see others trying to kill these viruses, but if a misguided immune system is behind the high numbers, then getting the immune system in check would eliminate that too. Right ??

Congrats on your improved health ... Marcia

[mamabear]

As far as I am concerned, there is no more such a thing as fibromyalgia than IBS. Both are syndromes, and you get labeled with them when your doctor is clueless, and won't investigate any further.

I was diagnosed with fibromyalgia seven years ago, too. I had the symptoms from the age of three. But if you look at fibro symptoms you'll find that they almost completely match celiac disease symptoms, with symptoms of some other intolerances thrown in.

The combination of eliminating gluten, all other lectins and all foods high in salicylic acid has pretty much cured the fibromyalgia, which I had for fifty years. I am sure that the rest is just irreversible damage from being undiagnosed for so long.

I have not heard of anybody with fibromyalgia who doesn't also have IBS to some degree. An irritable bowel is caused by something, and that fact should never be called a diagnosis in itself.

Rather than just going on a gluten-free diet, this lady should get tested for celiac disease first, and then do an elimination diet to find out what other intolerances she may have, if she tests positive. If she tests negative she may still be intolerant to gluten, and should then try the diet anyway.

Beautifully stated post.......I believe FM is an extension of gluten sensitivity. Also that all fibros be tested for celiac disease if they fit the celiac patterns.

[Ursa Major]

Ursula,

Thanks ... I didn't realize you and I had so many of the same symptoms. I guess it is time for me to look into what foods are causing my lymph nodes to swell. And into what thyroid / adrenal problems are behind the fatigue. These symptoms have improved, so I keep hoping I am on the right track.

Can swollen lymph nodes be caused by environmental allergies ?

Did you have high viral titers ? And do you know if that actually means anything other than your immune system is over active ??? I see others trying to kill these viruses, but if a misguided immune system is behind the high numbers, then getting the immune system in check would eliminate that too. Right ??

Congrats on your improved health ... Marcia

No, I never had viral titers. My doctor put me on an antibiotic a couple of times because of swollen lymph nodes, to fight 'whatever it was that was causing that'. It didn't really help (duh).

Beautifully stated post.......I believe FM is an extension of gluten sensitivity. Also that all fibros be tested for celiac disease if they fit the celiac patterns.

It is possible to have FM from other intolerances that do not include gluten. Foods high in salicylates can pretty much cripple people as well, if they are intolerant to them. Check out this website and read this lady's testimony: Open Original Shared Link

And here is a link to read up on lectins (gluten is one of them): Open Original Shared Link

I wished I would know if swollen lymphnodes can be caused by environmental allergies. I think I've had that happen before, but I am not sure. Normally my lymph nodes are fine now, and I do have environmental allergies. But they don't seem to be as severe any more.

[CarlaB]

I think that if someone has fibro they should be checked for systemic illnesses ... like celiac, Lyme, mercury toxicity, candida, etc. Many times it's even a combination of various things. I don't think we should accept that pain as normal and just take medicine to cover it up.

[chrissy]

i'm greatful that they are at least labeling it a "syndrome" now----at least it is acknowledged that people are really having the problems. i think that there are probably quite a few different "causes" of fibromyalgia. i'd sure like to figure out what is causing mine.

ursula---how did you figure out all your other sensitivities???

[Ursa Major]

i'm greatful that they are at least labeling it a "syndrome" now----at least it is acknowledged that people are really having the problems. i think that there are probably quite a few different "causes" of fibromyalgia. i'd sure like to figure out what is causing mine.

ursula---how did you figure out all your other sensitivities???

Chrissy, in October of 2005, when I first came here, somebody had posted a link on lectins. I read everything in that site, and realized that all lectin food had been causing problems for me, so I eliminated all of them two weeks after I cut out gluten.

Then, when right around Christmas all my pain came back, Rachel just happened to be investigating if she is intolerant to salicylates. I followed that link, and got really upset reading that, because I had come across the missing link. And it hardly left me with anything to eat!

But I decided to eliminate all high salicylate foods, and within a week the pain went away. So, I thought, maybe it is either lectins OR salicylates! And maybe not gluten, either!

Well, I challenged gluten first. Ouch, what an awful reaction I had! Next was rice. Almost the same reaction as to gluten, except that I slept for nearly 20 hours after eating that, and my ankles and knees were buckling on the stairs again. Not to mention the awful backache and joint pains.

I tried eggs a couple of days later, big mistake. Dairy fared no better, and peanuts made me burp and have reflux. So, I gave up on lectins, and stopped eating them for good (I have tested them here and there, since it is said that you shouldn't be intolerant to more than one or two groups for more than a year, which is untrue for me).

A week later I decided to challenge the salicylates. I ate three baby Aspirin (they gave me an instant burning tongue and sore throat), some almonds, an orange, a mint, some grapes and I drank some juice (I thought I might as well go all out, since I might never be able to eat those again).

That night I didn't feel too bad, so thought maybe I was wrong about salicylates. But when I woke up the next morning, I felt like I was on fire! I was in absolute agony, and had to go back on codeine (double dose) for three days. My skin was aching, it was that bad. All my muscles were aching so terribly that I felt like screaming. And I realized that was exactly how I used to feel all the time. How did I ever endure all those years? And my husband and kids didn't believe me, and claimed it was all in my head and I was just lazy all those years! Even one doctor said that.

Anyway, I have periodically cheated on those (only a couple of times on gluten), and it was always a terrible idea. Once I ate ONE orange, and couldn't use my hands the next day, they were hurting so badly.

I found out about the nightshades (which are lectin foods, as well as being high in salicylates, double whammy here) a couple of years before I figured out about the gluten from a naturopathic doctor (vega machine testing). I had suspected potatoes before the testing, because I'd get burning diarrhea after eating them. But I didn't realize that tomatoes were causing my awful migraines, which sometimes lasted three weeks at a time (I ate them all summer). And peppers cause awful rashes on my face, often they would be huge, pus-filled pimples all over my nose and chin, not a pretty sight! I don't know what eggplant would do, since thankfully I never liked those anyway.

So, really, the only way to figure those out is by doing an elimination diet. Only eat meat and vegetables low in salicylates for about a week or two to see if you feel better (you can have peeled pears and bananas, they are the only fruits with no salicylates). The vegetables that contain no salicylates are green/white cabbage, celery, rutabaga and iceberg lettuce. Other vegetables you can have a little of, but there is a limit to what will not cause problems.

After a week, try the lectin groups one at a time. Eat quite a bit of rice one day. Wait at least three days to see if you react before you try the next one.

The salicylate test is easy. I didn't know that it isn't recommended to test with Aspirin, since it could have caused an anaphylactic reaction. So, it would be better to eat something really spicy, with lots of herbs (both are terrible for me, and I mean ALL spices are bad, and most herbs too), in combination with oranges, pickles (very high), any berries and honey is very high, too. Drink mint tea (or any herbal tea, other than chamomile which is fine, and sweeten it with honey).

If you don't feel absolutely dreadful after all those foods high in salicylates (which have lots of antioxidants and are supposed to be especially good for people) by the next day, then you don't have a problem with them, and you have to keep looking.

You know, before I stumbled across gluten, I used to take all kinds of herbal remedies and supplements that were supposed to help with fibromyalgia, making myself worse! So, I'd abandon one, and try the next. My husband would get mad at me, saying that I was wasting his money and should just accept that I had to live with the pain (which is what the doctors said, too) and give up on finding a cure, since there is NO cure for fibro!

Of course now he claims he never said that, and is glad I figured it out.

[chrissy]

i have been weaning myself off of my wellbutrine and my cymbalta. my doc said i couldn't go off of them----but i can't see paying for two scripts a month----and still being depresses and agitated-----i can do that without paying the pharmacy. our weather is changing every few days and since i can feel the changes 3 days before they are obvious, i have been pretty miserable lately. our girls ped gi did tell me at one time that going gluten free might help my fibro. i eat gluten light, but i went completely gluten free for a month with no improvement. i looked through some of the symptoms for salycilates and i don't seem to have alot of those symptoms.

could a tick bite i got about 35 years ago come back to haunt me----or is that way too long ago?

[Ursa Major]

Yes, a tick bite could have caused all of your problems I think, and Lyme disease can flare up any time after being dormant for a very long time. You should try getting tested for Lyme disease, you never know.

[loco-ladi]

Ursa Major..... Can I just say anytime I get to feeling sorry for myself and being on this diet just smack me! WOW can't even imagine being on your diet at all.

I am however going to talk to my hubby's aunt as she was diag with fibro a couple years ago and now at the ripe age of 55ish she is living in an assisted living facilty and popping codene like candy just to make it thru the day.

[Ursa Major]

Ursa Major..... Can I just say anytime I get to feeling sorry for myself and being on this diet just smack me! WOW can't even imagine being on your diet at all.

I am however going to talk to my hubby's aunt as she was diag with fibro a couple years ago and now at the ripe age of 55ish she is living in an assisted living facilty and popping codene like candy just to make it thru the day.

I'll be 54 in three weeks, and I was getting to where I was completely disabled in 2005, at the age of 52. I was also relying on codeine, I was in such awful pain. So, not being able to eat a lot of things is sure better than taking all those painkillers (often I had to take extra strength Tylenol on top of the codeine, and was still moaning in pain). I am actually slowly getting better, and being able to do things. I believe I would be in a wheelchair by now if I wouldn't have figured out my intolerances!

[wowzer]

Ursa, I think it is amazing how you figured all this out. I believe my little sister whom is a diagnosed celiac wouldn't have fibromyalgia if she followed her diet strictly. She also has thyroid, persnicity anemia and arthritis. She uses pain killers to function. I hate taking medicine. I have had way to many allergic reactions to drugs. I am hoping to avoid any more than I have. I know my husband thinks I'm crazy and lazy. I'm still trying to figure out more food allergies. I need to do a food diary. Of course for me seems to be easier said than done. I do feel better since I've been gluten free. I think I'm finally getting the yeast under control. Now if I can only avoid catching the bad virus my husband has.

[CarlaB]

could a tick bite i got about 35 years ago come back to haunt me----or is that way too long ago?

My Lyme came from tick bites 35 years ago. Most of the time, I've been asymptomatic, but suffered from CFS and IBS several times over the years ... both caused by the Lyme, but I didn't know back then what was causing it.

If you've had a tick bite and suffer from fibro, I'd definately be tested for Lyme. You need to use Open Original Shared Link, it's the only lab that exclusively does Lyme testing, so it's the most accurate.

[AndreaB]

I think that if someone has fibro they should be checked for systemic illnesses ... like celiac, Lyme, mercury toxicity, candida, etc. Many times it's even a combination of various things. I don't think we should accept that pain as normal and just take medicine to cover it up.

I agree with Carla here. It would be a good idea to go through the testing for everything that could possibly be connected with fibro.

could a tick bite i got about 35 years ago come back to haunt me----or is that way too long ago?

Yes, Carla already posted that she is in that boat.

[sixtytwo]

I have celiac and fibro and although the fibro is better, I still have symptoms when I overdo it with stress or physical activity. I work too hard for someone my age. When I just take it easy, then I am fine. I take MOBIC which is an anti-inflammitory plus magnesium with malic acid. There have been other threads over the months on this subject. Some doctors just simply do not GET IT that fibro and celiac are closely related. If they have not read it somewhere or not figured it out themselves, then no amount of trying to convince them is going to help. I think I need a new more open-minded physician.

[Rachel--24]

could a tick bite i got about 35 years ago come back to haunt me----or is that way too long ago?

Yes...you can be infected with Lyme for a lifetime and not know it. Some people never get sick from it...others get non-specific symptoms which are labeled Fibro, CFS, IBS, etc. How sick you get usually depends on well a persons body can cope with the toxins from Lyme. As with everything...genetics play a role in this.

Even if your body is not particularly susceptible to Lyme toxins...its prescence does cause problems as far as getting in the way of the livers detoxification. It impairs detoxification...especially if there are other infections present alongside it (which is the usually the rule rather than the exception).

When detoxification is impaired environmental toxins accumulate as do heavy metals from amalgams and other sources. Things pile on top of each other so that eventually....even 35 years later...you can tip the scales and become chronically ill.

Lyme can also lead to autoimmune responses....especially when its a chronic and hidden infection.

Undiagnosed Lyme infections can wreak havoc. The bacteria is also often passed in utero so children can be symptomatic even if the mother is asymptomatic.

In recent studies Dr.'s who are testing their Autistic patients have found that more than 90% of them test positive for Lyme...almost always passed on from the mother.....who is either asymptomatic or has been previously diagnosed with autoimmune disease, Fibro, IBS, or CFS.

So yeah...from all I've researched it doesnt matter if the tick bite occurred 75 years earlier...if the immune system cant cope with it anymore or other factors have piled up because of it...symptoms of disease can develop.

I agree with all who've said that Fibromyalgia is a "label"....rather than a diagnosis. Its given to those who have undiagnosed underlying issues. Same with CFS and IBS. They are not a diagnosis of anything and the treatments are only good for covering up symptoms.

Everything listed in my signature could have resulted in a diagnosis of IBS, CFS, or Fibro....had I been looking for that type of "label".

I dont know how long I've had Lyme. I have no idea...it could have been since childhood for all I know. All I know is I didnt get sick from it until I got exposed to alot of mercury from getting old fillings drilled out. My body couldnt handle the mercury burden...I couldnt detox anything....and since then I've been sick.

[jcc]

I got a call from an aquaintance of mine asking me about the gluten free diet. Her Mother was just dx'd with Fibromyalgia and was told she should go on a gluten free diet to help her symptoms. As I understand it, Celiac was not brought up, nor has this person been tested for it. The dr. explained about how gluten was in so many things and suggested a strict gluten free diet. So why in the world should someone try the gluten free diet if they have Fibromyalgia? Is this common? I know it's common for people with Celiac to be misdiagnosed with Fibro but if they really just have Fibro would the gluten-free diet help? Thanks if anyone knows anything about this.

Here is some info I've found about fibromyalbia/CFS. Even without meeting the diagnostic criteria for celiac disease, many people suffer from gluten sensitivity (and possibly other food sensitivities, too) that may contribute to their symptoms.

However, if this person hasn't been tested for celiac disease, they SHOULD BE, before removing gluten from the diet. Then, even if the tests are negative, they might still improve on a gluten free diet... and might look for other food sensitivities as well. There is a page in The Gluten File linked below my name on delayed food allergy testing (IgG rather than IgE), too, which is something not commonly tested by mainstream allergists and can cause chronic symptoms.

Open Original Shared Link

Hope this helps.

Cara