What is Fibromyalgia
Fibromyalgia (FM or FMS or Fibro) is a debilitating chronic syndrome (constellation of signs and symptoms) characterized by diffuse or specific muscle, joint, or bone pain, fatigue...
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I would like to talk about a few things that are interesting to me. First, do you think Fibromyalgia is an auto immune disease? I had one doctor tell me he thought it was, but most stuff online says it is not. I have found some researchers online that say they believe it is though. Second, how many of you have more than one auto immune disease (that is if you consider fibro to be one)? Third, do you have a history of auto immune diseases in your family?
I tend to consider Fibro to be an auto immune disease personally. That would mean that I have 4 auto immune diseases, maybe 5. I think I still have Lupus even though the first test was negative. They include Fibromyalgia, Hashimoto's Autoimmune Thyroid disease (HAIT), Chronic Fatigue Syndrome, and Lupus Anticoagulant Disorder (blood clotting disorder). The LA caused me to almost die of bilateral blood clots in my lungs (pulmonary embolisms) back in April. This article does not talk about the Lupus Anticoagulant though. The symptoms in 3 of these are VERY similar. Various Symptoms Seen in CFS, FMS & HAIT: Widespread pain Fatigue Feeling run down, sluggish Muscle cramps and pains Unexplained or excessive weight gain Inability to lose weight Gastrointestinal problems Irritable bowel syndrome Poor sleeping Headaches and migraines Constipation Exhaustion Depression Low exercise tolerance Rashes Concentration difficulties Feeling cold. Cold in extremities Dry, coarse and/or itchy skin Dry, coarse and/or thinning hair Increased menstrual flow More frequent periods Infertility Difficulty breastfeeding Recurrent miscarriage Swollen glands Low grade fever Slowed thinking, mental fog Husky voice Eczema, acne, rashes Swelling and fluid retention Carpal tunnel syndrome Numbness and tingling in extremities Raynaud's Syndrome Reduced sexual interest and ability More frequent infections Worsening of allergies and asthmatic reactions Chemical sensitivities Difficulty getting a full breath More frequent yeast infections Slow pulse Puffiness around the eyes Low blood pressure Neck pain/neck aches/ Chest pain Researchers found that defects in the hypothalamus-pituitary-adrenal axis have been observed in AUTOIMMUNE DISEASES such as thyroid disease, rheumatic diseases, chronic inflammatory disease, chronic fatigue syndrome AND fibromyalgia. They also found that levels of thyroid hormone are decreased during severe inflammatory disease. Dr. John C. Lowe, one of the nation's pioneers in fibromylagia research, has, in a 1997 research study reported in the Clinical Bulletin, that he found clear relationships between thyroid function and fibromyalgia, and believes that some form of hypometabolism, including thyroid dysfunction, may in part explain FMS. In studying patients with diagnosed fibromyalgia, Dr. Lowe ran thyroid function tests on each patient. Those with elevated TSH levels (indicating hypothyroidism) did not undergo TRH stimulation tests. Those who had normal TSH levels were subsequently also given a TRH stimulation test. Of the patients studied: * 10.5% had primary hypothyroidism. * 36.8% were diagnosed as euthyroid (in normal thyroid state) * 52.6% had results, via the TRH test, that were consistent with central hypothyroidism. Overall, the results of this analysis suggest that approximately 64% of fibromyalgia patients had thyroid hormone deficiencies. And interestingly, the level of primary hypothyroidism found among FMS patients is 10.5 TIMES HIGHER than what you'd expect to find in the general population. I got all this from an article called "Chronic Fatigue Syndrome, Fibromyalgia, and Autoimmune Thyroid Disease". I also have a sister that has 2 auto immune diseases. Chronic fatigue syndrome, and Myasthenia Gravis (very debilitating neuromuscular disorder). I am also pretty sure that my mom has Lupus Anticoagulant disorder as I do since she had 5 miscarriages. Just a thought. I know this was long. I applaud you if you got to the end! I look forward to your thoughts on this. There was a lot more on this article, but I didn't want to overuse it. It was interesting as I have all 3 disorders listed. Thanks all! Posted on 12/19/09, 03:41 pm |
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It's not a question of opinion - the auto-immune theory was heavily researched and discarded some time ago. The big difference between fibro and ALL auto-immune disorders is that ALL auto-immune disorders do damage to organs and tissue - fibro does not.
I've discussed the many "theories" concerning fibro with doctors involved in current research, and this is what I've found - something that was researched as long ago as the 80s - and conclusively discarded as a path of research. The current research is all neurological - central nervous system - central sensitivity - pain pathways - all based in the brain and central nervous system. No one is sure yet what it IS, but they are definite about what it is NOT. 
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Peace is correct, although there is much discrepancy still regarding this issue. This is the latest link and research involving Dr. Eric Guedj.
http://latimesblogs.latimes.com/bo... If you have problems with this link, just google his name, Dr. Eric Guedj and this newest study proving scientifically that our illness is a central nervous system disorder. This explanation alone is not cut and dried, as there are hormonal inbalances also in relation to our condition. For example, we have higher levels of Substance P in our system, which causes our pain levels to escalate which I am sure is related to the CNS as well. (central nervous system) so when ppl say, oh its all in your head YUP thats where our brains are lol!
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The endocrine system is another place they look, but it all seems to originate in the CNS. From the number of people, including myself, who have reported exacerbated symptoms during their menstrual cycle, it's almost impossible to ignore the hormonal issues, but still it's all chemical, probably all originating in the CNS which is the "control switch" for pretty much everything.
The symptom overlap with so many other conditions has some significance, but only in the sense that they may also have a basis in the CNS, or in hormonal imbalances. It's important to remember that correlation is not causation - something researchers are prone to overlook if they go in with a prejudice toward a particular outcome. I have found that some practitioners cling to the autoimmune thing, in the face of all the science to the contrary, probably because it gives them something they feel they can treat. I have met a number of chiros who still insist on the autoimmune causation, as well as fibro being an inflammatory condition, both of which are old science, long since discarded. I feel it's because, without those connections, they don't have a "tool" to work with fibro. My own chiro is one of those who cling to this - we just don't talk about it any more. She's also a friend and I value the friendship so stay away from that place where we seriously disagree - kind of like politics and religion :)
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Cool. That is what I have heard in the past and had accepted it but keep reading other things so I wasn't sure what to believe. Thanks for the corrections! One question though. What is it that causes the rashes and hives that I get that is said to be caused from the Fibro? Is that not considered damage to tissue or just a reaction? I think I just answered my own question, but a reaction to what? I have had a rash for 5 months. Is this the central sensitivity? What does that mean? I am sensitive to something? I guess one of the hardest things for me to understand is this horrible embarrassing rash all over my neck. Thanks!
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Everybody has the right to believe what they want to about this disease for themselves and to form their own opinions. Nothing is written in stone and even research opinions have changed from believing it's an arthritis, to auto immune to brain signals or nerve synapse. The fastest way for them to cure it is to find out what causes it. I believe for now it's an auto immune disease because I also have so many other auto immune diseases, but I'm no scientist. I think my body is attacking its self because it overreacts to stimulus. Just as allergies, asthma, arthritis or GERD do. Our senses overeact to light, sound, smells and touch. I figure the inside of our bodies must be over reacting too. This is simply my opinion and I love hearing what everyone else thinks too. I reserve the right to change my opinion at any time and probably will in the next ten years or so. I know I have changed my way of thinking about many things over the last decade and want to keep my mind open to all possiblilities.
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Everybody has an absolute right to believe whatever they believe about ANYTHING - just don't confuse beliefs and opinions with facts, which are not subject to opinion or belief.
Some people don't like to be confused with facts when they would require a change in what they believe.
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Just my opinion but I think one of the causes of fibro is going to be this link to the XMRV virus. Viruses have been known to attack the brain, maybe this is why they are finding problems with the brain and central nervous system. It has been shown how this virus enters the cell and becomes part of the DNA of the cell, maybe altering the way the cell is suppose to act.
Also because a theory may have been discarded does not mean that it has been disproven. We still have no cause for fibro so no theroy has been proven or disproven. And there could be several causes. Also some doctors do believe that fibro has some inflammatory symptons as part of the illness.
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Beliefs & Opinions do not equate to facts. I rely on science, and I use the word "discarded" interchangably with "disproven" which is what I meant, and what the researcher means who keeps me up to date.
I just discovered a flaw in the "ignore" button - the messages still come to your email even though they don't show up in the thread. Going to have to ask about that.
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whatever word you choose discarded or disproven doesn't matter most research is stopped because of three things funds ran out or they were not able to prove what they intended or they were attacked by other organizations. Not being able to prove something is not the same thing as disproving something. Most people who go into research are not researching to disprove something so I find it hard to believe that someone can say they disproved someting the only thing they can say is that they did not prove it. Big difference.
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This was taken from oslersweb site. The research was in CFS but it makes you wonder how many other research projects were not funded as a result of the CDC and other organizations.
We’ve known since early 1996, when Osler’s Web was published, about the CDC’s fiscal malfeasance and lies to the Congress and, in partnership with the organization CAA, to the public, as regards this disease. We’ve monitored the agency's willful ignorance of—indeed, their extreme hostility to—the science in this field. We’ve recognized their propagandistic agenda. We’ve never lost sight of their bio-ethical failures. But if it turns out their failure to replicate Elaine DeFreitas’s findings of a novel retrovirus in this disease, followed by their attempt to destroy her professional reputation, was purposeful, or even incompetent, then the multi-billion dollar complex of buildings in Atlanta known as the CDC is as much a crime scene as it is a federal science agency. The XMRV virus linked to CFS/ME is the results of privately funded research would we even know about this if the government were involved. Oh they weren't funding this type of research might be why other research in this area and other areas were discarded.
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