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Fibromyalgia And Chronic Pain - Anyone Else?
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Hello,

I'm 5 weeks new to having Celiac Disease. For over 3 years I've had crippling chronic pain over my body and was diagnosed with Fibromyalgia. I've gotten shots in my hips and spine, been on Neurotin, Cymbalta, pain meds, you name it. Nothing worked. Does anyone have experience or clear info on whether Celiac can mimic Fibromyalgia? I also have horrible stiffness and pain in my hands and my feet. I am hoping and hoping that a gluten-free diet will help but I don't want to get my hopes up too much. I would love some feedback/encouragement. 5 weeks on the diet and I haven't noticed anything yet.

Thanks!

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Hello,

I'm 5 weeks new to having Celiac Disease. For over 3 years I've had crippling chronic pain over my body and was diagnosed with Fibromyalgia. I've gotten shots in my hips and spine, been on Neurotin, Cymbalta, pain meds, you name it. Nothing worked. Does anyone have experience or clear info on whether Celiac can mimic Fibromyalgia? I also have horrible stiffness and pain in my hands and my feet. I am hoping and hoping that a gluten-free diet will help but I don't want to get my hopes up too much. I would love some feedback/encouragement. 5 weeks on the diet and I haven't noticed anything yet.

Thanks!

Certainly have no advice to give on Celiac and chronic pain, but have you been evaluated for other rheumatic diseases, Lyme disease, lupus, spinal arthritis, or Crohn's and ulcerative colitis which can and do present with musculoskeletal complications? Fibromyalgia, while there is a lot of evidence that it's a real disease, is a diagnosis of elimination, rather than inclusion. Wondering if you have all your chronic bases covered. =)

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Hi!

I've had some of the same problems. Back in January I started seeing one of the top Fibro docs in Calgary. She has it as well. The first thing she made me do was toss out all my toxic cleaning chemicals and personal care products. Anything with a fragrance was now off limits...even unscented because it was created to cover up chemical smells. She made me switch to fragrance free and all natural products like using Seventh Generation fragrance free detergent, fabric softener, dish detergent and using vinager for everything else. I found a gluten-free and fragrance free shampoo at the health food store and deodorant. Guess what? I started feeling better. From her experience the medications on the market may only work for a year or so. She wants to find out the why behind a person's symptoms. She also made me switch my table salt. Apparently, the one I was using contained a chemical which was grandfathered in and was never tested. It is toxic to humans. So read the label on the type of salt you buy. Pick one that says "Salt" only.

Next she took me off dairy. From her research 90% of her patients are intolerant to dairy. She was thrilled that I was already gluten-free. From my own experience getting off the dairy helped me with my stiffness (aprox. 50%), but when I took the "Now" Brand of Borage oil my stiffness in my hands and feet vanished. I take two of those a day. I also take a Caltrate. Gluten free only helped me a bit, but when I went gluten-free, Dairy Free and chemical and fragrance free...I noticed that I finally felt human for the first time in years. My doctor is a true healer, not a pill pusher.

I hope some of this information is helpful to you.

Many smiles,

Paula

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Hello,

I'm 5 weeks new to having Celiac Disease. For over 3 years I've had crippling chronic pain over my body and was diagnosed with Fibromyalgia. I've gotten shots in my hips and spine, been on Neurotin, Cymbalta, pain meds, you name it. Nothing worked. Does anyone have experience or clear info on whether Celiac can mimic Fibromyalgia? I also have horrible stiffness and pain in my hands and my feet. I am hoping and hoping that a gluten-free diet will help but I don't want to get my hopes up too much. I would love some feedback/encouragement. 5 weeks on the diet and I haven't noticed anything yet.

Thanks!

Ciao from a fellow chronic pain and FMS sufferer for 4.5 years. My chronic pain is so widespread, from my neck to my ankles. Always. No reprieve. Much of it is due to herniated discs, degenerative disc disease, myofascial syndrome and IT band syndrome as well as fibro. I feel like I have been beaten with an iron rod all over my body. It hurts to lie down. I can hardly sit. It hurts just to change my clothes and have a shower. So, I understand where you are coming from. I've been on Neurontin, Cymbalta, Lyrica and a host of painkillers and nothing has helped even a smidgen. I've had the shots as well with no relief. I go for weekly massage, have had physio, acupuncture, laser, etc.

I was diagnosed with celiac 15 months ago and have been strictly gluten free and to my knowledge have only been accidentally glutened once. Being gluten free has not helped my pain much, sadly. I've tried eliminating dairy (didn't help) and soy (also didn't help).

The only thing that does help me is that I completely changed the way I look at things. Pain used to have such a firm grip on me. Not only that but fear avoidance - what ifs. What if I go to my sister's and...what if I travel on a plane and... It was horrible. But now I control the pain and no longer plan according to it. I just go ahead and do whatever it is. The worst that can happen is more pain but I am used to pain. Distractions are huge with me. Thankfully my hobbies are many and varied. Though cooking, my favourite hobby other than travel, hurts I do it because I love it and it takes my mind off pain temporarily. I read about 250 books a year. I look for ways to constantly improve my brain function (right now I am learning Croatian). My husband spoils me but doesn't coddle me because I do not want him to. He is such a support it is unreal. He just holds me when I cry without saying a word. He has taken time off work many times because of my pain. Not any more! Why? I am coping and managing better.

Extremes in temp really hurt. This heat is causing serious spikes in pain.

I'd like to encourage you to learn to control your pain and not rely on meds. I was doing that for awhile but they didn't help, anyway. It is easier said than done. When my chiro first told me chronic pain is very mental as well and that I had to stop giving over to pain, I thought he was insane. Now I get it. It has turned my life around, actually. If you need to talk please PM me. I know what you are going through and how you feel. Some days are good, some are bad. All have pain. But I've kicked that pain to the curb! Well, mentally.

Oh, another thing that helps is not thinking ahead. I used to often think that if I am this bad when young, how the heck will I be when I am 50? 60? 70? That through me into a panic wondering what kind of life I would lead. But I travel to Europe (after praying for a miracle each time) which still amazes me because most Sundays I cannot even sit in church - I must stand, so sitting on planes? Wow. That causes excruciating pain. But I still do it because it gives me such a feeling of accomplishment.

I understand and am here for you. :)

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I forgot to mention..I'm taking one of these at bedtime: 100mg of 5-Hydroxytryptophan (Griffonia source). It really helps with your sleep. Got mine at the health food store.

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I forgot to mention..I'm taking one of these at bedtime: 100mg of 5-Hydroxytryptophan (Griffonia source). It really helps with your sleep. Got mine at the health food store.

You bring up a good point. Sleep is crucial. I rarely sleep well due to pain (must get up and walk around because the tenderness nearly drives me mad). I have been taking Zopiclone for years when I need to and thankfully have not grown dependent on them. I limit myself to once per week and try even less than that. Wonder if I should try 5-HTP.

Chronic pain doctor has me on magnesium glycinate, B12, B complex, D3 and Zinc.

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Certainly have no advice to give on Celiac and chronic pain, but have you been evaluated for other rheumatic diseases, Lyme disease, lupus, spinal arthritis, or Crohn's and ulcerative colitis which can and do present with musculoskeletal complications? Fibromyalgia, while there is a lot of evidence that it's a real disease, is a diagnosis of elimination, rather than inclusion. Wondering if you have all your chronic bases covered. =)

Thank you for your advice. I have been checked out for everything that is why we are at Fibromyalia. But I've heard hopeful stories that Celiac's often have the same type of pain that can go away with the gluten-free diet...

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Hi!

I've had some of the same problems. Back in January I started seeing one of the top Fibro docs in Calgary. She has it as well. The first thing she made me do was toss out all my toxic cleaning chemicals and personal care products. Anything with a fragrance was now off limits...even unscented because it was created to cover up chemical smells. She made me switch to fragrance free and all natural products like using Seventh Generation fragrance free detergent, fabric softener, dish detergent and using vinager for everything else. I found a gluten-free and fragrance free shampoo at the health food store and deodorant. Guess what? I started feeling better. From her experience the medications on the market may only work for a year or so. She wants to find out the why behind a person's symptoms. She also made me switch my table salt. Apparently, the one I was using contained a chemical which was grandfathered in and was never tested. It is toxic to humans. So read the label on the type of salt you buy. Pick one that says "Salt" only.

Next she took me off dairy. From her research 90% of her patients are intolerant to dairy. She was thrilled that I was already gluten-free. From my own experience getting off the dairy helped me with my stiffness (aprox. 50%), but when I took the "Now" Brand of Borage oil my stiffness in my hands and feet vanished. I take two of those a day. I also take a Caltrate. Gluten free only helped me a bit, but when I went gluten-free, Dairy Free and chemical and fragrance free...I noticed that I finally felt human for the first time in years. My doctor is a true healer, not a pill pusher.

I hope some of this information is helpful to you.

Many smiles,

Paula

Very interesting information, thank you. I'll try anything at this point. I own and run two stores and a design loft so I can't stop for pain, no matter how crippling. So that has resulted in pushing my body beyond the beyond. I have trouble staying on my feet (they really hurt) and I can't get into the shop until 11 in the morning because it takes so long to get my body going. I never do anything after work but go straight home. I never have food in the house because I'm too tired to shop. I will try all those ideas! Thanks again. Penny

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Ciao from a fellow chronic pain and FMS sufferer for 4.5 years. My chronic pain is so widespread, from my neck to my ankles. Always. No reprieve. Much of it is due to herniated discs, degenerative disc disease, myofascial syndrome and IT band syndrome as well as fibro. I feel like I have been beaten with an iron rod all over my body. It hurts to lie down. I can hardly sit. It hurts just to change my clothes and have a shower. So, I understand where you are coming from. I've been on Neurontin, Cymbalta, Lyrica and a host of painkillers and nothing has helped even a smidgen. I've had the shots as well with no relief. I go for weekly massage, have had physio, acupuncture, laser, etc.

I was diagnosed with celiac 15 months ago and have been strictly gluten free and to my knowledge have only been accidentally glutened once. Being gluten free has not helped my pain much, sadly. I've tried eliminating dairy (didn't help) and soy (also didn't help).

The only thing that does help me is that I completely changed the way I look at things. Pain used to have such a firm grip on me. Not only that but fear avoidance - what ifs. What if I go to my sister's and...what if I travel on a plane and... It was horrible. But now I control the pain and no longer plan according to it. I just go ahead and do whatever it is. The worst that can happen is more pain but I am used to pain. Distractions are huge with me. Thankfully my hobbies are many and varied. Though cooking, my favourite hobby other than travel, hurts I do it because I love it and it takes my mind off pain temporarily. I read about 250 books a year. I look for ways to constantly improve my brain function (right now I am learning Croatian). My husband spoils me but doesn't coddle me because I do not want him to. He is such a support it is unreal. He just holds me when I cry without saying a word. He has taken time off work many times because of my pain. Not any more! Why? I am coping and managing better.

Extremes in temp really hurt. This heat is causing serious spikes in pain.

I'd like to encourage you to learn to control your pain and not rely on meds. I was doing that for awhile but they didn't help, anyway. It is easier said than done. When my chiro first told me chronic pain is very mental as well and that I had to stop giving over to pain, I thought he was insane. Now I get it. It has turned my life around, actually. If you need to talk please PM me. I know what you are going through and how you feel. Some days are good, some are bad. All have pain. But I've kicked that pain to the curb! Well, mentally.

Oh, another thing that helps is not thinking ahead. I used to often think that if I am this bad when young, how the heck will I be when I am 50? 60? 70? That through me into a panic wondering what kind of life I would lead. But I travel to Europe (after praying for a miracle each time) which still amazes me because most Sundays I cannot even sit in church - I must stand, so sitting on planes? Wow. That causes excruciating pain. But I still do it because it gives me such a feeling of accomplishment.

I understand and am here for you. :)

You are wonderful to reach out, thank you. I have lived with pain most of my life but 4 years ago it became crippling. I push through because I have to but much of the time I'm too sore and tired!!! Fatigue is awful. I have absolutely no social life as I can't even imagine doing anything but go straight home to the couch after work. My life is severely limited. It is depressing and I try and fight that but I am, as they say, sick and tired of being sick and tired. The Celiac is the added bonus I got two months ago after being sick all winter. I hear the gluten-free diet can help all this pain but I hope to find someone who can attest to that. It was great to hear from you, I hope you feel better. Penny

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Penny - I lived with chronic fatigue and low grade pain, mainly in my back, for 25 years, following the sudden onset of what I now know to be celiac-like symptoms when I was a student. The doctor called it post viral fatigue, but with hindsight I doubt it was that. Over the years the pain worsened and I gradually developed chronic headache/migraines, severe neck, shoulder and back and hip pain.

18 months ago I developed systemic inflammation and I felt so stiff I could hardly move. I felt like the proverbial michelin man, unable to move in a large inflexible body suit. I had other symptoms too. I was so tired and ill-feeling I was struggling severely at work. I could hardly walk anywhere, let alone go to the gym, and was doing the bare minimum to get by at home.

I went gluten free nearly a year ago, and the worst of the pain disappeared quite quickly. The stiffness resolved, the migraines, neck, shoulder, back and hip pain went away, the tingly or sometimes numb arms and fingers normalised, and the generalised body aches reduced. The fatigue didn't go though. In fact it got much worse for a while, to the point I thought I might yet have to give up work. It did gradually get better, but it took over 6 months before I felt anything other than horrible on waking each morning, and being able to bounce up the stairs rather than stagger. The main recovery factors were probably just time and patience, but I think being as grain free as I could reasonably bear, avoiding processed foods, taking vitamins and probiotics, and being very vigilant about cross contamination helped speed things along.

Because I was still struggling with some abdominal symptoms, and to try to get a formal diagnosis via endoscopy etc, I did a gluten challenge of just 2 weeks about 2 months ago. It was really horrible, as the all the body pain, fatigue, migraines and abdominal pain came back with a vengeance. Since going gluten free again, my recovery pattern has been the same as before, and after 2 months I still have some minor residual pain, and am still significantly fatigued. Things are still improving slowly though.

I hope you feel better soon. From reading other people's stories here, I suspect my improvement was reasonably quick. I've seen some say it took a year or two to feel significantly better.

PS It's early days for you yet, but have you considered that other intolerances might also be contributing to your pain? For me dairy is a big no-no for abdominal symptoms, soy seems to be a trigger for body aches and migraine, and coconut gives me burning skin. I am trying to be vigilant for any other triggers, and remain suspicious of eggs and nuts.

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Love2travel - I admire your attitude so much. It takes great strength of mind to push severe pain to one side and get on with living life to the full. I am really sorry to hear that you still haven't experienced any improvement in your pain. For me, gluten seemed to cause systemic inflammation which then squeezed any weak or damaged areas of my body (I have some dodgy discs and had widespread soft tissue damage to my neck and spine after a car accident some years ago). Removing the gluten reduced the inflammation, which in turn reduced the pain hugely. Improving the flexibility of my spine and the strength of my core neck, spinal and abdominal muscles via therapist-guided pilates also made a massive difference. I had to stop my "maintenance" routine when I fell ill (I was so sore and stiff, it just stopped working!), and haven't got back to it yet, but I hope to so soon, to complete my recovery.

I have a colleague who suffers in a similar way to you, and who has a similar tough "mind over matter" attitude to her pain. She smiles and jokes while walking slowly and stiffly with a cane. You can see the pain in her eyes, but she ignores it. I do wonder if removing gluten from her diet might help reduce her pain at least a little, particularly as she has a son who seems to have classic celiac symptoms. I have talked to her about the effect of gluten on my less severe pain, and she is interested, but hasn't as yet pursued it.

I met a young girl and her mother at a youth event recently. The girl had started using a wheelchair 6 months earlier, and the mother was frantic trying to find out why. Her doctors (from a major hospital) were clueless. Apparently she could just about move her legs, but it was extremely painful for her to do so. I asked her Mum if she had been tested for celiac. The Mum said no, she hadn't thought her symptoms could be celiac-related, but that her other daughter had celiac...... Neither the Mum nor the girl's doctors seemed to have any idea that gluten could cause anything other than abdominal symptoms. I gave her references to a few medical papers to show the doctors, to try to hurry along an appropriate referral for investigation. Apparently she is following them up.

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Love2travel - I admire your attitude so much. It takes great strength of mind to push severe pain to one side and get on with living life to the full. I am really sorry to hear that you still haven't experienced any improvement in your pain. For me, gluten seemed to cause systemic inflammation which then squeezed any weak or damaged areas of my body (I have some dodgy discs and had widespread soft tissue damage to my neck and spine after a car accident some years ago). Removing the gluten reduced the inflammation, which in turn reduced the pain hugely. Improving the flexibility of my spine and the strength of my core neck, spinal and abdominal muscles via therapist-guided pilates also made a massive difference. I had to stop my "maintenance" routine when I fell ill (I was so sore and stiff, it just stopped working!), and haven't got back to it yet, but I hope to so soon, to complete my recovery.

I have a colleague who suffers in a similar way to you, and who has a similar tough "mind over matter" attitude to her pain. She smiles and jokes while walking slowly and stiffly with a cane. You can see the pain in her eyes, but she ignores it. I do wonder if removing gluten from her diet might help reduce her pain at least a little, particularly as she has a son who seems to have classic celiac symptoms. I have talked to her about the effect of gluten on my less severe pain, and she is interested, but hasn't as yet pursued it.

I met a young girl and her mother at a youth event recently. The girl had started using a wheelchair 6 months earlier, and the mother was frantic trying to find out why. Her doctors (from a major hospital) were clueless. Apparently she could just about move her legs, but it was extremely painful for her to do so. I asked her Mum if she had been tested for celiac. The Mum said no, she hadn't thought her symptoms could be celiac-related, but that her other daughter had celiac...... Neither the Mum nor the girl's doctors seemed to have any idea that gluten could cause anything other than abdominal symptoms. I gave her references to a few medical papers to show the doctors, to try to hurry along an appropriate referral for investigation. Apparently she is following them up.

It's so good to hear that someone has had success with gluten-free and chronic pain. Your pain areas sound so much like mine. Going gluten-free is really my last hope right now. If I have full-blown Fibro AND Celiac, that will really through me. Here's hoping!

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It might just take more time than you think. When I saw a rheumatologist I think he was minded to diagnose fibromyalgia, as I leapt in the air when he tested the fibro sensitive points, all of them. I think he saw that I was underwhelmed by this idea. Ditto IBS with a gastroenterologist. Apparently I don't have celiac....They were both right that I dislike both these diagnoses in anyone, as they are just a label to show that doctors understand that there is a significant problem, but don't know what is causing it, or suggest a decent treatment. If I hadn't had the confidence to insist that gluten was quite likely to be the enemy thanks to a strong familial history of confirmed celiacs, I would still be eating gluten, still be sick, still using expensive healthcare resources, and probably wouldn't be working either. Anyway, both doctors were happy to accept that I am gluten sensitive as my inflammatory markers and some minor antibody tests and nutritional deficiencies normalised on going gluten free and my response was confirmed by elimination/challenge diet.

You might also want to look at Irishheart's content as she deals with major neurological pain, but is improving slowly.

Good luck!

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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