“I’m not confused, I’m just well mixed”, Robert Frost
How sad it is that this invisible dis-ease that affects primarily women (although many more men and children are reported to be experiencing FMS than before) has led to so much continued confusion about causation. The theories about the cause of fibromyalgia have preoccupied researchers for the past several decades, partcularly as the numbers of reported cases have risen dramatically.
I will admit to my own theoretical belief up front by stating that I write as though it is an accepted fact that it s a central nervous system disorder, caused by a hyper-aroused nervous system of a highly sensitive person and is NOT a disease (See the article by Sue Cartledge, May 26, 2008 , womenshealth.suite101.com/article.cfm/fibromyalgia_and_ultrasensitivity) However, there are others who are as firm as I, who maintain another perspective. My theory is speculative and perhaps even un-testable which is even more problematic. However, the perceived causes are so diverse than one can be left in a state of perpetual confusion. Let me list a few, then briefly outline my own position. For the interested I have dedicated an entire chapter on differing perspectives in my book, but for now a brief summary of just a few more popular ones will suffice, to add to a previous blog about this same issue. However, I could not begin to list here all the possible speculated about causes of this challenging condition.
There are many who believe that fibromyalgia is caused by hypermobility (HMS)of joints. This view is usually supported by a mode of history taking whereby the person is asked about her life long sports and mobility history or injuries, along with any sign of ‘double jointedness’ and other kinds of unusual joint movement. While this is only a brief overview of the hypermobility theory, it is more usually common among some physical therapists and a few orthopedic type professionals. However, unlike many other perspectives, this approach does not suggest medications as a treatment modality. The physical therapist I saw in Tucson was rather adamant that this was indeed the cause of FMS.
There are others who maintain that FMS is caused by bacteria overgrowth in the small intestines (SIBO). While I have tried to find the precise claim that the drug Xifaxin used primarily for Irritable Bowel Syndrome (IBS) actually can cure FMS, as some suggest, nonetheless I have not found that proof. Not all FMS sufferers have irritable bowel syndrome. The above mentioned drug has been used for ‘traveller’s diarrhea’ and IBS, but the linkage to FMS has not, to my knowledge, been proven, nor greatly accepted by the scientific community, even though there are those who do believe in the bacteria causation. Furthermore, someone does believe that taking this specific medication can cure FMS, as suggested to me recently.
In the 1990s it was somewhat popular to suggest that Biophysical Semeiotics could find the answer to the FMS cause. While I am not a math expert, I am married to a retired math professor and we have had several discussions about ‘chaos theory’. I must admit that it is somewhat beyond me to fully understand the ways in which a physician can utilize this approach to allow him/her to recognize clinically the cause of FMS. However, it is a concept proposed by a few as a means of employing chaos to show physiological processes and, it has been suggested that this would show the cause of FMS. This approach does not seem to have been very successful among many researchers.
Endocrinology/Bio-identical Hormone Replacement Therapy/ Auto Immune Disease categories seem to fit together. The thyroid gland produces a hormone, and a disorder of the thyroid gland (as an auto immune disease), shows that the body is attacking itself. The idea that FMS is an auto immune disease related to the thyroid gland has been around for quite some time. However, years of research has shown that FMS is not an auto immune disease like arthritis, multiple sclerosis or lupus. I have interviewed very many people with FMS and none have said they have a thyroid disorder (I have been the exception). I believe that since FMS is more common among middle-aged women after menopause that there has been a dubious relationship sought by many to link the thyroid with fibromyalgia.
Ah! Now there are the virus theorists. They are of the ilk that FMS/CFS are caused by viruses. Their primary view is that many developed FMS/CFS after a bout of flu or some other virus. But, many came to fibromyalgia after an accident, surgery, a traumatic life event or after prolonged stress just as frequently as those who had just been exposed to a virus. We are still waiting for this virus to be named.
Let me see now… how about the Alkalyzing and balancing theory that suggests we need to increase our oxygen intake so that we can better absorb minerals, or the Ayurvedic view of pathogens that need to be sucked out of the body, or the yeast (candidiasis) problem, or parasites, or hypothalamitis ? Need I go on? The list is never ending. We are still left confused and waiting for that accepted cause that all can agree upon and can be scientifically ‘proven’.
Well, I don’t think it is coming. I believe we are going to remain uncertain for quite some time. So, my theory takes another quite different approach than the medical model of disease. I believe that it is a condition of people who are highly sensitive, canaries in a coal mine (to coin author Elaine Aron, The Highly Sensitive Person), who develop an overwhelming empathy with others, who are high energy, highly intuitive, and who have withstood great emotional stresses in their lives. We (they) are now living with chronic anxiety.
Why is this condition reaching such great proportions of late? Watch the news! One either can become immune to the fear and anxiety that pervades our everyday lives or succumb to it. The result of these characteristics of the highly sensitive person ? An ultra aroused nervous system… a ‘dis-ease’, so to speak. Furthermore, I believe that it is a societal cause and problem, particularly as it seems to affect primarily women, or it it that women report the characteristics of this syndrome more frequently? But… I give away too much. My book defends this position more fully than I can do here. While I cannot ‘prove’ such a theory, I am not willing to give up on this speculative cause; my 40+ years of living with and researching fibromyalgia gives me that right.