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    Do you have questions about celiac disease or the gluten-free diet?

Diane S

C.f.s./fibromyalgia

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Hi, anyone who is struggling with weight issues that also has either fibromyalgia or chronic fatigue syndrome? I was diagnosed two years ago with celiac and hoped it was the answer to all my health problems I'd dealt with for twenty years. The acute stomach pain went away and the twenty five pounds I'd lost while waiting to be diagnosed quickly came back on as I enjoyed food again. Since then I have gained another twenty five and can not find a program with gluten free food. Asked Jenny Craig, L.A. weight loss, Nutra system etc. I'm too tired to spend a lot of time cooking and haven't found the right exercise either that doesn't leave me in a lot of pain. Any suggestions I'd appreciate. Thanks, Diane

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Diane, I've had fibromyalgia from the age of three (or so we thought, after I was diagnosed with fibro six years ago, and knew I had symptoms from that age on). Now it is obvious, that I've always had celiac disease, and other severe food intolerances.

I've had terrible back pain from the age of 7 (eventually the doctors gave up on me, and declared it to be psychological), awful joint and muscle pain, I used to be as thin as a stick and severely underweight, until I started gaining weight when pregnant with my first child, and never stopped! Even though I didn't eat much (which nobody believed). I never had any energy, even as a child. I had severe asthma from the age of three as well. I'd get hives and psoriasis (now I look at pictures, and they looked an awful lot like DH). I had eight miscarriages, and very difficult pregnancies.

I was in such severe pain in my back, all joints and muscles, migraines that would last up to three weeks at a time, that I was on codeine 24 hours a day for nearly five years (and often had to take extra strength Tylenol on top of the codeine), until last October.

The celiac disease causes terrible stomach and bowel symptoms (alternating diarrhea and constipation, bowel and stomach cramps that are so bad, I want to die, rumbling, gas, bloating, acid reflux and more), irritability, fatigue, brain fog, joint pain and others.

At first, after eliminating gluten, my stomach and bowel problems cleared right up, the backache got so much better two days after starting the gluten-free diet, it was a miracle, and within two weeks I was off all painkillers. I had NEVER been in so little pain (it wasn't gone all the way, but I was able to cope without painkillers). Within two weeks of being on this site (in October of 2005) I saw a post with a link to the lectin site I am linking to in my signature. I read through the explanation for lectins, and what they are, and realised that I always had a problem with all of those. So, I eliminated them as well (and gluten is one of the lectins).

I lost 30 pounds, and started having some energy. But after three months, the pain came back. It was getting worse and worse!

After Christmas at first I thought that I had been wrong to suspect gluten, and purposely ate a couple of pieces of pizza. Not much happened that night (other than a stomach ache and heartburn). But by the next day I was feeling terrible, and got awful diarrhea.

Still, the pain in my muscles and the fatigue persisted. Then I saw a post by somebody who thought she might be intolerant to salicylates. I did some research, because her symptoms sounded much like mine. I found the other site I am linking to, and some articles by and about people who got cured of fibro by eliminating salicylates. I decided to try it (especially because I knew that I am intolerant to nightshades, and interestingly, they are high in both lectins and salicylates, and I knew berries gave me problems, and I've never liked using herbs, they never seemed to agree with me). Well, after eating a diet very low in salicylates, as well as gluten and lectin free for a couple of weeks, the pain went away again.

So, I thought maybe it's EITHER lectins, OR salicylates (I really didn't want to give up EVERYTHING!), and tested it. First I ate rice one night for supper. Within an hour terrible stomach ache, by the next day awful joint pain, joint buckling, extreme fatigue, diarrhea. I tried eggs a few days later, with much the same symptoms, plus sleeping for 17 hours straight, and still being tired!

A week later I tried the salicylates. I ate six chewable children's Aspirin, some grapes, a couple of almonds, a peppermint candy, an orange and a teaspoon of honey (all very high in salicylates, but of course, Aspirin is just salicylic acid, and the worst of those). That evening I didn't feel too bad, and felt rather foolish. But when I woke up the next morning I felt like I was on fire! I was hurting so badly for two days (even my skin was aching) that I had to go back on codeine for those days.

I find that I really can't tolerate any starches very well, including buckwheat, arrowroot, tapioca etc. I only bake for myself as a rare treat, when I really need to have something nice for fear of giving in and cheating (not on gluten, but other things). Starch makes me start gaining weight instantly.

Now, as long as I am 'good' and really adhering to my very restricted diet, I don't need painkillers, have much more energy (and getting better), my skin problems are slowly clearing up, I am slowly losing weight (I can finally handle being seen in a bathing suit again, after not going swimming for nearly ten years), my joints are working again, my eyesight is improving, my feet and hands aren't swollen any more, and a lot of others.

I believe that possibly up to 50% of people with fibromyalgia have it as a result of undiagnosed celiac disease (and other intolerances, also as a result of celiac disease). And the ones without celiac disease still would be helped by eliminating foods they're intolerant to (if only doctors weren't so lazy and ignorant, and would understand that, and wouldn't give up testing until they've exhausted EVERYTHING, before slapping a diagnosis of fibro, or IBS on people, and telling them that nothing can be done, or sending people to psychiatrists, because it's 'all in their heads'.......what an insult! I had to put up with that attitude for 52 years before figuring it out MYSELF).

Anyway, why don't you follow the links in my signature, and try eliminating things you think might be a problem, and see if you don't improve!

Sorry for this to be so long, but it isn't possible to explain all this and to be truly helpful otherwise.

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Guest Robbin

Ursula, THANK YOU SO MUCH FOR YOUR POST. I have been gluten-free since January and like you, at first lost weight, felt better and thought my fibro was going to go away, but not so lucky. Rice, corn, and tapioca are causing me a lot of problems. I think it is like peeling an onion, one layer of this crazy illness leads to other layers. I did lose the painful lumps from the myofacial pain syndrome that I have with the fibro. Has anyone else here had this with the fibro? I am so thankful that the link between these two conditions is recognized. Maybe those of us with long-standing fibro can look forward to a complete recovery someday. I wish you both many more pain-free days :) Diane, I too struggle with the weight and am probably going to go back to Adkins, since it was the only diet I ever lost weight on and felt decent. Just have to get a little stronger.

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I also have fibro and CFS along with hypothroid, so I'm VERY tired all day, but I find that working out helps my pain and energy levels.

I've been using a glider for about 5 years now, theres no impact on the body and my pain Dr thinks its the best machine I can use. I also lift weights 5 days per week, not heavy, only 12 lbs but start off light...remember..If You Rest You Rust lol

heres what my glider looks like, its fun too!!

hope this helps

http://cgi.ebay.com/XL-Glider-Exercise-Mac...1QQcmdZViewItem

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Robbin, I have had myofascial pain syndrome (maybe from a severe accident when I was 15?). And the painful lumps wouldn't go away. I am now going to massage therapy once a week, after I finally found a massage therapist who is knowledgable about this. Actually, she now works in my chiropractor's office (and the two girls he had before didn't understand those issues, so I didn't bother). She says I am the worst case she has ever worked on! But she is slowly but surely releasing those tender points, and it is getting much better.

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yes, massage really does help, My PT taught my hubby the correct way to work my back to relive pain in my back and legs, it makes a difference when I'm in need

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Robbin, I have had myofascial pain syndrome (maybe from a severe accident when I was 15?). And the painful lumps wouldn't go away. I am now going to massage therapy once a week, after I finally found a massage therapist who is knowledgable about this. Actually, she now works in my chiropractor's office (and the two girls he had before didn't understand those issues, so I didn't bother). She says I am the worst case she has ever worked on! But she is slowly but surely releasing those tender points, and it is getting much better.

Ursula-

I think I must have myofascial pain syndrome too, in addition to my FMS....

Mine started a few years ago...constantly sore, knotted muscles. I know this wouldn't be in the cards for some--but I have started Pilates--good combination of lengthening/stretching the muscles and also muscle building. Stretching is very important for FMS. I know you can buy stretching videos for FMS specifically. I've seen them if you are interested.

Have you tried magnesium/malic acid? That is one of the most successful pain management options for FMS.

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Ursula-

I think I must have myofascial pain syndrome too, in addition to my FMS....

Mine started a few years ago...constantly sore, knotted muscles. I know this wouldn't be in the cards for some--but I have started Pilates--good combination of lengthening/stretching the muscles and also muscle building. Stretching is very important for FMS. I know you can buy stretching videos for FMS specifically. I've seen them if you are interested.

Have you tried magnesium/malic acid? That is one of the most successful pain management options for FMS.

Thanks, Jen. I have a video tape for stretching, just always forget. The massage therapist gave me special stretching exercises specifically for those really bad areas.

Those knots in the muscles won't release on their own, even if you stretch. They need to be massaged and worked out by massage. They don't hurt any more, unless poked, and I'm off all pain medication now. Obviously all those issues were caused by food intolerances (and the massage therapist agrees with that). Once those knots are gone and I will be on a maintenance schedule (massage once a month, instead of every week), they shouldn't return.

Oh, and I am taking a magnesium/calcium/vitamin D supplement. But I think I was probably low in magnesium and calcium because my vitamin D was really low, and I am now taking cod liver oil and try to get outside to get sunshine more often.

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Thanks, Jen. I have a video tape for stretching, just always forget. The massage therapist gave me special stretching exercises specifically for those really bad areas.

Those knots in the muscles won't release on their own, even if you stretch. They need to be massaged and worked out by massage. They don't hurt any more, unless poked, and I'm off all pain medication now. Obviously all those issues were caused by food intolerances (and the massage therapist agrees with that). Once those knots are gone and I will be on a maintenance schedule (massage once a month, instead of every week), they shouldn't return.

Oh, and I am taking a magnesium/calcium/vitamin D supplement. But I think I was probably low in magnesium and calcium because my vitamin D was really low, and I am now taking cod liver oil and try to get outside to get sunshine more often.

Ever had myofascial stripping? Ugh--I had done every week for several months. This was prediagnosis--in desperation to figure out what was wrong with me :( My doc said it would break up the fascial adhesions I had (all over). Needless to say, I do think this works in certain cases, but it didn't for me this time around. I ended up no better and it was horribly painful at times--think tears in the doctors office !

You mentioned the poking--so true! Poking is what hurts most! If I am laying on the couch and my cat walks across my hips---ouch !! Massage therapy is definitely good. I try to go ever once in a while...but it just really expensive. I could try and look into getting it done thru my insurance though maybe--via physical therapy ? Interesting about the salicylates too... I am glad that diet has been a help to you! I hope that I just need some more time...we'll see...

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Does anyone know the stats on what percentage of fibromyalgia sufferers have celiac disease or gluten intolerance? My mother-in-law has fibro and EXTREME anxiety issues, so I wonder. But she also has a lot of weirdness around anorexia-type food issues, and my husband doesn't want me to even SUGGEST to her the possibility that there's another major food group that she shouldn't be eating.

Jeanne

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Hi, anyone who is struggling with weight issues that also has either fibromyalgia or chronic fatigue syndrome? I was diagnosed two years ago with celiac and hoped it was the answer to all my health problems I'd dealt with for twenty years. The acute stomach pain went away and the twenty five pounds I'd lost while waiting to be diagnosed quickly came back on as I enjoyed food again. Since then I have gained another twenty five and can not find a program with gluten free food. Asked Jenny Craig, L.A. weight loss, Nutra system etc. I'm too tired to spend a lot of time cooking and haven't found the right exercise either that doesn't leave me in a lot of pain. Any suggestions I'd appreciate. Thanks, Diane

Hi Diane,

I was diagnosed with CFS and Fibromyalgia about 10 years ago, and although I haven't been officially diagnosed with celiac, I now follow a gluten free diet as well.

Diet has been 'key' for me for dealing with fatigue and the pain of fibro, unfortunately that has meant a LOT of cooking, preparing each and every meal for the day and when you are so wiped out I know that is the last thing you want to do. I find that for me the pain of fibro sets in when I eat anything processed with a lot of chemical/synthetic/fake ingredients, high sugars or too much grain or starchy food, and full fat dairy. Basically I follow a whole foods diet 95% of the time and I have a few indulgences 5% of the time, eating a lot of fresh fruits, vegetables, good quality sources of proteins and fats, lots of filtered water. I also take magnesium and a multi vitamin. All of this has made a big difference in the way I feel and it also keeps my weight down.

As for exercise, the most I could manage during really bad times of fatigue was walking. I tried to get out everyday for as many minutes as I could to get some fresh air, sunlight, even if I couldn't walk fast just to get the blood pumping and the oxygen flowing in my body a little bit. A mini-trampoline is also a good option, you can turn on your favorite music and jump gently to receive a little benefit (gets the lymph system going). I currently do yoga and when I do a very gentle relaxing session it doesn't take too much out of me.

I know everyone is different but this is what has helped me.

Best of luck to you!!

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I have fibro too and have learned so much from Ursula and other kind souls here.

I have spent the last 6 months (and £ks..) on testing, doctors, vits and sups, hours online. I only realised the link to celiac when my daughter was dx last year and saw that so many of us here have FMS too. A great site for FMS/CFS

http://www.drmyhill.co.uk/article.cfm?id=73

The name of the illness

A recent report from the Royal College of Physicians tells me I have to call ME Chronic Fatigue Syndrome (CFS). There are lots of other names: fibromyalgia, post viral syndrome, neurasthenia. It is all the same thing. Whilst the experts argue about names, I am only interested in getting sufferers better. Actually, I see ME as a virally induced CFS, but CFS has many other causes. The problem with Western Medicine is that doctors do not diagnose any more. They treat symptoms with symptom suppressing drugs instead of getting to the root cause of disease. This arises as a result of original thinking in medicine being driven by the pharmaceutical companies. The best policy for drug company profits is to have a population of sick people requiring medication for life, so never diagnose and cure - that is bad for business. The multinational pharmaceuticals dictate to the doctors, medical journals and government, and treatment guidelines are set up accordingly.

There are some common associations that I see in patients with chronic fatigue syndrome between certain symptoms and their immediate causes.

Colicky as a baby, dry skin/eczema, sinusitis/catarrh -suspect allergy to dairy products. Try dairy free diet.

Fatigue/lethargy - suspect allergy to grains, hypothyroidism. Try grain free diet.

Cold hands and feet, muscle ache/spasm/cramp/ twitching - suspect magnesium deficiency.

Thirst - suspect lack of essential fatty acids, i.e. GLA and EPA (evening primrose/fish oil).

White flecks on the nails - suspect trace element imbalances, especially zinc deficiency.

Sugar craving/wind and bloating - suspect gut symptoms, hypoglycaemia. To test this, consider 'Gut fermentation profile.'

Headaches - suspect allergy to tea, coffee, caffeine, dairy products: try dairy free diet.

Natural addicts - some people get "hooked" easily on things such as sugar, caffeine, tobacco, alcohol, wheat, cheese, running, chewing gum etc. They tend to substitute one addiction for another. They often have allergy problems. See PIMS. ...........

http://www.stopthethyroidmadness.com for adrenal fatigue and thyroid links to fibro. good for suggesting self treatment or doctors who will actually listen.

I have been working my way down the list as most did apply to me :P

I hope that this is of some help and does not keep you up too late! I don't post much now as I'm supposed to be in bed by 10pm for my adrenal system to re-charge :P:P:P:P but I do drop in occasionally.

D

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Guest Robbin

Hi again everyone. I have been doing myofacial trigger point therapy for about 6 years, but the lumps and pain never completely went away. The really bad ones on my thighs and calves have gone and maybe a slight tenderness is there still, but the muscle wasting and fatique is what is so debilitating. I had surgery on one of my eyes a week and a half ago and I expected a full-blown fibro attack. I was surprised by the way I felt --not so sore, but so tired and muscles just plain weak. I have had fibro for 22 years (probably longer, just mis-dx'd) and coupled with the casein/gluten intolerance, I am a weakened mess. Interestingly, about 4 years ago, I had purchased a book about protein diets and it had a section on how to calculate your lean body mass. I had written down the numbers in the book and I had a lean body mass of 114. I recently re-calculated the numbers and I am now something like 80. That is scary, and I am hoping to lose the fat and get some kind of muscle tone. Is muscle easily replaced, or will the fibro prevent "rebuilding?" Has anyone had a good result/recovery from muscle wasting? Any help is greatly appreciated.

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I'm too tired to spend a lot of time cooking and haven't found the right exercise either that doesn't leave me in a lot of pain. Any suggestions I'd appreciate. Thanks, Diane

Hi Diane, have you considered tai chi, or Qigong, as a form of exercise? It's another option for a gentle non-impactive type of movement that you could look into.

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Hi,

I was looking at Lame Advertisement.com website

and they had some great info about fibromyalgia and other chronic illnesses.

Tons of info that was helpful for me!

Hope this helps.

Elizabeth :)

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Hi everyone especially Ursalla for all your suggestions. I have started eliminating the gluten free cookies and sticking to rice crackers. I've lost four pounds just by doing that. I've always had a big craving for sugar and as soon as a friend told me what candies were safe I have been buying them too much. There right at the checkstand and if I missed eating lunch I grab one. So that is my next task to talk myself out of doing that. I have tried tai chi a couple years ago but the instructor moved. All of us had cfs or fibro in the group so he was a great teacher. I just checked into a club fifty the other day. I understand it is like curves but for us older folks and they had several people with fibro going there. They have a diet program but when I asked about gluten they had to look it up first. It looks like it is mostly shakes which I don't know if I will do even if gluten free. I just started taking mangosteen juice which is supposed to help with fibro and sinusitis etc. I see a chiropractor often and he recommended the mangosteen. It's available at costco or on the internet. It's interesting how many of you mentioned facial pain. I've had T.M.J. since I was a teen and a few years ago spent oodles of money for veneers after being tired of all the dental appliances. But I still get headaches mostly around my sinuses but my x-rays always show no sinus infection. I haven't tried massage and I'm wondering if that is my next experiment. I will let you know if I do join club fifty and if I lose weight and can handle the exercise. When I walk too much which means just grocery shopping I'm in pain around my ankles and feet! I'm wondering if I'm still getting gluten in something I'm not aware of? Diane

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Guest Robbin
Hi everyone especially Ursalla for all your suggestions. I have started eliminating the gluten free cookies and sticking to rice crackers. I've lost four pounds just by doing that. I've always had a big craving for sugar and as soon as a friend told me what candies were safe I have been buying them too much. There right at the checkstand and if I missed eating lunch I grab one. So that is my next task to talk myself out of doing that. I have tried tai chi a couple years ago but the instructor moved. All of us had cfs or fibro in the group so he was a great teacher. I just checked into a club fifty the other day. I understand it is like curves but for us older folks and they had several people with fibro going there. They have a diet program but when I asked about gluten they had to look it up first. It looks like it is mostly shakes which I don't know if I will do even if gluten free. I just started taking mangosteen juice which is supposed to help with fibro and sinusitis etc. I see a chiropractor often and he recommended the mangosteen. It's available at costco or on the internet. It's interesting how many of you mentioned facial pain. I've had T.M.J. since I was a teen and a few years ago spent oodles of money for veneers after being tired of all the dental appliances. But I still get headaches mostly around my sinuses but my x-rays always show no sinus infection. I haven't tried massage and I'm wondering if that is my next experiment. I will let you know if I do join club fifty and if I lose weight and can handle the exercise. When I walk too much which means just grocery shopping I'm in pain around my ankles and feet! I'm wondering if I'm still getting gluten in something I'm not aware of? Diane

Diane, perhaps you have other intolerances that you haven't figured out yet. Many of us are discovering that there are other intolerances underlying the gluten intolerance. I think, for me at least, the gluten intolerance, coupled with the casein intolerance caused such an overload on my immune system or something that the fibromyalgia/myofacial pain syndrome/cfs took over. I know what you mean about the grocery shopping pain. I get so tired from the grocery store-yet on some days I can hike quite a lot. I figured it out that 1.) I am stressed usually at the grocery store-hate it 2.) I usually wear uncomfortable shoes to the store, like sandals 3.) I am standing in one position for an extended period of time-which is bad for fm --at the checkout. I have been trying to remember to put on comfortable shoes and use the easy pay checkout when possible so it will not be so bad. Some days grocery shopping is the only thing I can do and even the next day I am wiped out. Don't go on a rainy day either, it will make it 10x as bad. Have you checked out the omg...I might be... thread? There is a discussion on the "spoon " method. It was at the beginning of this week. FM sufferers know about this first-hand. Check it out. It has to do with how much energy you have to expend each day and how you conserve your strength. The author of the discussion uses spoons to represent units of energy so people can get a little understanding of how it is to live with a chronic illness that drains your energy. Take care and let us know how you are doing.

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Diane, perhaps you have other intolerances that you haven't figured out yet. Many of us are discovering that there are other intolerances underlying the gluten intolerance. I think, for me at least, the gluten intolerance, coupled with the casein intolerance caused such an overload on my immune system or something that the fibromyalgia/myofacial pain syndrome/cfs took over. I know what you mean about the grocery shopping pain. I get so tired from the grocery store-yet on some days I can hike quite a lot. I figured it out that 1.) I am stressed usually at the grocery store-hate it 2.) I usually wear uncomfortable shoes to the store, like sandals 3.) I am standing in one position for an extended period of time-which is bad for fm --at the checkout. I have been trying to remember to put on comfortable shoes and use the easy pay checkout when possible so it will not be so bad. Some days grocery shopping is the only thing I can do and even the next day I am wiped out. Don't go on a rainy day either, it will make it 10x as bad. Have you checked out the omg...I might be... thread? There is a discussion on the "spoon " method. It was at the beginning of this week. FM sufferers know about this first-hand. Check it out. It has to do with how much energy you have to expend each day and how you conserve your strength. The author of the discussion uses spoons to represent units of energy so people can get a little understanding of how it is to live with a chronic illness that drains your energy. Take care and let us know how you are doing.

hi, I'm still trying to get used to this forum thing. Not quite sure how to find the article you mentioned about the spoon method? Thanks for all your suggestions. I think when I'm finally out doing things I want to take care of it all in one day so I don't have to go out the next day. And then of course I'm in agony when I come home! Diane

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I was dxd with FMS 26 yrs ago. Found out in Aug 2000 that it was caused by Lyme disease. If there's any chance you FM and CFS'rs could have Lyme, you need to get tested through Igenex Labs in CA. It's just like in celiac disease........The right lab makes all the difference in the world.

I am MUCH better with MUCH less pain after many years of treatment. If you don't treat the CAUSE, the damage will continue.

Hope this helps! :)

www.igenex.com

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I have fibro too and have learned so much from Ursula and other kind souls here.

I have spent the last 6 months (and £ks..) on testing, doctors, vits and sups, hours online. I only realised the link to celiac when my daughter was dx last year and saw that so many of us here have FMS too. A great site for FMS/CFS

http://www.drmyhill.co.uk/article.cfm?id=73

The name of the illness

A recent report from the Royal College of Physicians tells me I have to call ME Chronic Fatigue Syndrome (CFS). There are lots of other names: fibromyalgia, post viral syndrome, neurasthenia. It is all the same thing. Whilst the experts argue about names, I am only interested in getting sufferers better. Actually, I see ME as a virally induced CFS, but CFS has many other causes. The problem with Western Medicine is that doctors do not diagnose any more. They treat symptoms with symptom suppressing drugs instead of getting to the root cause of disease. This arises as a result of original thinking in medicine being driven by the pharmaceutical companies. The best policy for drug company profits is to have a population of sick people requiring medication for life, so never diagnose and cure - that is bad for business. The multinational pharmaceuticals dictate to the doctors, medical journals and government, and treatment guidelines are set up accordingly.

There are some common associations that I see in patients with chronic fatigue syndrome between certain symptoms and their immediate causes.

Colicky as a baby, dry skin/eczema, sinusitis/catarrh -suspect allergy to dairy products. Try dairy free diet.

Fatigue/lethargy - suspect allergy to grains, hypothyroidism. Try grain free diet.

Cold hands and feet, muscle ache/spasm/cramp/ twitching - suspect magnesium deficiency.

Thirst - suspect lack of essential fatty acids, i.e. GLA and EPA (evening primrose/fish oil).

White flecks on the nails - suspect trace element imbalances, especially zinc deficiency.

Sugar craving/wind and bloating - suspect gut symptoms, hypoglycaemia. To test this, consider 'Gut fermentation profile.'

Headaches - suspect allergy to tea, coffee, caffeine, dairy products: try dairy free diet.

Natural addicts - some people get "hooked" easily on things such as sugar, caffeine, tobacco, alcohol, wheat, cheese, running, chewing gum etc. They tend to substitute one addiction for another. They often have allergy problems. See PIMS. ...........

http://www.stopthethyroidmadness.com for adrenal fatigue and thyroid links to fibro. good for suggesting self treatment or doctors who will actually listen.

I have been working my way down the list as most did apply to me :P

I hope that this is of some help and does not keep you up too late! I don't post much now as I'm supposed to be in bed by 10pm for my adrenal system to re-charge :P:P:P:P but I do drop in occasionally.

D

Thanks, this all is very informative. What is pims? LL

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I was dxd with FMS 26 yrs ago. Found out in Aug 2000 that it was caused by Lyme disease. If there's any chance you FM and CFS'rs could have Lyme, you need to get tested through Igenex Labs in CA. It's just like in celiac disease........The right lab makes all the difference in the world.

I am MUCH better with MUCH less pain after many years of treatment. If you don't treat the CAUSE, the damage will continue.

Hope this helps! :)

www.igenex.com

I was diagnosed with Lyme in 1989 about two years after the c.f.s. diagnosis. They treated it with antibiotics and the next test was negative. The doctor was puzzled that I didn't feel any better. People are also perplexed that my problems haven't gone away since being on a gluten-free diet. I do drink soy milk but will have to try getting rid of all dairy as have sinusitis too. Will there be anything left I can eat? The fibro was diagnosed in 1995 but I think it's all connected. As there are many in my support group who have been told they have fibro and c.f.s. Haven't found any that also have celiac or at least they don't know they do. I've advised them all to be tested. Apparently I'm more likely to get osteoporosis since I have celiac and had a total hysterectomy. Has anyone else been told that? My father died from non hodgkins lymphoma and complained about stomach problems for as far back as I can remember and now I know that is another thing that is linked. Diane

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Guest barbara3675

Another person checking in to say I have had TMJ, migraines, then diagnosed with fibromyalgia three years ago and a gluten intolerance two years ago (age 61 now). I carry a gene for the disease. The conventional doctors just don't seem to get the connection between all of these autoimmune diseases, but it is right there in black and white for them to see if they would just look. It will become more obvious to them if we just keep at them about it. I would like to find a good doctor that really gets it, but I have found the right regime of eating and medicine myself so I am getting along fine. I eat gluten-free, take magnesium with malic acid every day for the fibro and also a stong anti-imflammitory called Mobic, a prescription is needed. I get it from a pharmacy in New Zealand (after my rhumatologist prescribed it for me) it is cheaper there. I also take calcium, vitamin D and C, glucosamin, and Doxepin (a prescribed anti-depressant) for sleep disturbances. I cannot get a full night's sleep without it. On another thread today they are claiming that interstitial cyctytis and celiac go hand-in-hand. My mom has had terrible bouts with that over the years and we just recently got her on the gluten-free way of eating. She is 88. Barbara

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