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12 Replies
freckle - August 29

I was diagnosed twelve years ago, I have done tons of research, the symptoms of food allergies can be the same as fibro, some meds side effects can be the same as fibro, the long list of stress ansd anxiety synptoms I found was identical, there has to be a common factor that the doctors are not aware of but that we may get to the bottom of should we put our heads together, I think that we are the only people that might ever find the cause, problem is I do not know how to go about it, right now I am in a bad flare, what makes it that eases off at times, what I am changing in my diet or in my life? what brings it back? is anyone interested in comparing lifestyle, for instance my daughter in law had a brain tumor, she lives on diet pop, there are numerous study pointing the connection between diet soda and brain tumor, what is our connection? if anyone wants to contact me in the hope that we find some answers my email is the may not get back to you until next week as I am expecting my sister and her husband for the long week-end, still don't know how I will be able to entertain them as I am in agony, anyhow I will respond to everyone who writes.
Also does anyone know a fibro doctor in Ontario?
Regards to all,


JJ1 - August 29

Could it also be that a myriad of problems/illnesses are all being lumped under one label - fibromyalgia? My symptoms certainly aren't classical FMS - my fibrofog gets bad but my aches and pains are short lived and rarely severe. I have a friend who thinks many with FMS diagnoses may really have Lyme Disease. I know some think it is due to hard to detect malfunctioning thyroid. Allergic reactions can also contribute to symptoms. ......... Regarding diet soda, I have never drank it regularly and don't use any artificial sweeteners.


freckle - August 30

I suspect that in my case, msg is a big contributor, seing that it comes under twenty differents names it is quite difficult to avoid, the food industry has found a way to be able to quote no msg on thir products by adding natural and articicial flavors, I just know that certain foods can send me in a flare. I am told that a lot of people do not have the necessary enzimes to digest a great majority of carbs, as for lyme disease, my cousin who is a nurse by profession was near her death bed by the time she was diagnosed with Llyme, the usual testing is not very accurate for long standing lyme, there are a few labs who have a new more reliable way of detection, my cousin was borned and raised in northern Ontario where lyme disease was unheard of until recently, as for the anxiety one wonders about the chicken and the egg theory, fibro is unduly stressfull yet the majority of us have been struck with this horrible disease shortly after a life trama, the symptoms are the same so one wonders if the anxiety is treated properly will the fibro disappear


JJ1 - August 31

Relieving stress certainly relieves my symptoms. Sometimes that is hard to do. Work was a major stressor for me and I went on part time which seems to help but can't handle the lack of $$ so going back full time next week. :-(


javabean - August 31

I bet there are many misdiagnosis. FMS has so many varied symptoms, and there is no "sure" way to diagnosis it. And it also has many similar symptoms to other conditons (Lupus, Lyme, CFS, MS, B12 deficiency....) most of these conditions are also lacking sure methods of diagnosis. That is what is making this so difficult and certainly a frustrating experience for all of us ! At least FMS has gained much attention over the past couple years. I am hopeful there will be progress in understanding the syndrome soon.......


islandguy - August 31

I agree with javabean in as much as the misdiagnosis. At one time I think that if a doctor could not give a diagnosis he threw it into the fibromyalgia hat so that the patient would go away with something! For the first time ever I have found a pain specialist that acutally listens and sincerely cares.
Everybody knows somebody that has been diagnosed with fibro years ago and they are better. We must remember there is no cure for fibro. The pain can be controlled with drugs but beyond that there isn't much they can do.
It irates me when someone comes up to me and says "you have fibro,,,,I had that years ago and my doctor cured it with anti-i. inflammatory drugs or whatever. If your fibro was cured with anti- inflammatory did not have fibro but the doctors put it in the same pot......
You are right about the misdiagnosis....If a general practioner told you that you have fibromyalgia.....I would strongly suggest that you visit a rheumatologist and get the real diagnosis.
There are certain pressure points to qualify you for the syndrome even before they start to attempt to give you some relief. I wonder how many people with fibro would react to the pressure points should they be tested today....


rcrchick29 - September 5

I definately agree with misdiagnosis, but also with islandguy, if you have not had the pressure point test done then i would get a second opinion before i agreed with a fibro diagnosis, i went to the doctor for 6 years, long long years, of being told it was in my head, or that i was depressed, etc, etc, then i got referred to a doctor that read my records, did the pressure points test, i didnt realize i had all of the 18, and he sat down and talked to me and said you have fibro, finally someone that knew what they were doing!!!! massage therapy helps alot if you can find someone that is knowlegable about fibro and knows the pressure points, but it is expensive and of course most insurances wont pay, so i have only had a few when i was in a bad flare up, but it does help if you ever feel like you are at wits end, go get a massage!!


Bridget B - September 8

My fibro is going away and I do this:

-eat 100% organic foods.
-take activive,enzymes,omega-3,teen vitamin( whole food supplement), melatonin before bed, glucosamine sulfate, vitamin D3 and B-complex.
-shop at a health food store
-avoid restaurants entirely
-spread the word!


Robin1237 - September 20

Well, I think all this is Lyme disease. My fibro of 25 years turned out to be Lyme. I was bitten by a tick on my foot in 1981. Had no symptoms at the time; they developed slowly. I got tested for Lyme last year, came back positive, went on clindamycin antibiotic 150 mg 4x/day and the fibro pain went to zero in one week. The folks at are great. -- helping everyone with their symptoms, how to find a knowledgeable doctor, what tests to do, which labs to use, discussing various treatments, etc.


Robin1237 - September 20

Micheline -- just read your post again -- the web site you should go to is -- that's Canada's Lyme site. And what you will need is to ask about a Lyme/coinfection treating doctor. Some Canadians do come to the US for treatment. By the way, the disease is erratic because the bacteria are erratic. That's why our symptoms fluctuate.


nburnett5 - September 20

Micheline, Wish u well with ur family weekend visit.
Take it with some ease and let them know right away that u r moving at a slower pase and Im sure that they'll help u. don't feel the need to do it all as most gracious hosts do.
Less stress = Less pain!
Nburnett5 =)


megh - October 4

I am very frustrated that there is not more advocay for us. CFS was able to get listed in SS impairments yet Fibro is not. I have gone from a very good income to nothing. I am very grateful that I have a supportive family but what about those of us who are alone. I can trace my Fibro back to exactly when I got it. I was sick with a flu like virus. I am emailing you a paper I found on the net I haven't had a chance to check it out yet but it sounds legit to me.


Robin1237 - October 20

Megh, I think fibro is actually Lyme disease, a bacterial infection. Symptoms often start with a flu-like response. Go read at



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