If you are one of the many who suffer from fibromyalgia, you know the feelings well: pain which moves from joint to muscle to bone to back to head. If pain were the only problem, perhaps you could handle it better, but factor in the fatigue, lethargy, tingling and confusion, and your life can seem like a living 'death' sentence.
Fibromyalgia occurs predominantly in women, with the female-to-male ratio reported to be about 20 to 1, and afflicts an estimated seven to ten million Americans. Even more impressive are the estimates that fibromyalgia generates between twenty to thirty million physician visits a year in the United States alone. But it's not a condition unique to Americans. This "unexplained pain" syndrome has been reported in almost every part of the world.
Fibromyalgia has been defined by experts as a syndrome of episodes characterized by diffuse body pain and the appearance of at least 11 'tender points' out of a possible total of 18. However, to sufferers of fibromyalgia, the syndrome consists of much more than mere tender points.
Migraine headache, Irritable Bowel Syndrome, Pelvic Pain Syndrome, sleep disturbances, restless leg syndrome, premenstrual syndrome, Raynaud's Syndrome (spasm of blood vessels in the fingertips and toes), extreme sensitivity to cold and generalized body stiffness all afflict the sufferer of fibromyalgia.
Women make up over 95% of those diagnosed with "fibro." This complicates the diagnosis and treatment of the disorder more than it should, because of the conventional medical world's historical bias toward women. That bias is evident not only in terms of diagnosis and treatment, but also in the lesser quality and quantity of basic research into those afflictions which are predominantly female-oriented.
The question I have always had to deal with, and not without some degree of medical embarrassment, is "how did I get this?" and "what caused it?" The honest answer is that we don't know what causes fibromyalgia. We do know that it is not new, but has gone by many different names in recent medical history. Terms such as "neurasthenia", "fibrositis", or my favorite "non-articular (joint related) rheumatism" have been used to describe the same constellation of symptoms. During the 1960's and 1970's, 'hypoglycemia' was often the diagnosis given for the same disorder which we know now as fibromyalgia.
Many hypotheses exist as to the cause of fibromyalgia, and many of them are quite elegant. Unfortunately for the typical woman who goes to the doctor for these symptoms, she will hear a less than elegant explanation.
"Maybe your husband isn't paying enough attention to you," quips one physician, while another answers "Why don't you get a life? You spend too much time at home with your children." Or you could go to the specialist which these doctors recommend and hear, "Depression is common among women of your age/race/racial/economic/weight/educational/marital status. By treating your depression, we'll be able to make the pain go away".
The worst case, and a too frequent scenario: the physician pronounces that: "You're a drug addict and you need professional help (meaning a 30 day inpatient stay in a psychiatric hospital, at about $20,000US)."
Because of the male bias in medical research (female physiology is taught as a deviance of "normal" male physiology), relatively little is known about the etiology and pathophysiology of fibromyalgia. But there are some things we do know.
Studies done at the University of Alabama using PET scan technology have demonstrated that there are differences in the area of the Limbic System (or emotional brain) between women with and without fibromyalgia. There seems to be a higher level of activity in that system in those afflicted with the disease. There are significantly fewer endorphins (naturally occurring morphine-like chemicals) in the brains of women with fibromyalgia. Also, EEG (electroencephalogram) studies show dysfunction in the right brain hemispheres of women with fibromyalgia and a similar syndrome known as the 'chronic fatigue immune deficiency syndrome'. The right hemisphere is generally responsible for the emotional and integrative functions in the brain.
Most intriguing is the estimate that up to 90% of women with fibromyalgia have an history of either sexual, physical or emotional abuse during childhood, adolescence or early adulthood. The changes seen in the PET, endorphin and EEG studies could easily be associated with the long term effects of psychological trauma. Perhaps this is what leads some doctors to discount the condition as "psychosomatic." Yet the real significance of these studies is the proof that fibromyalgia is marked by very real physiological differences.
Treatment for fibromyalgia is a trial and error process. Generalist physicians will prescribe amitriptyline (a tricyclic antidepressant). Most do this because they have heard that it's the right thing to do, although some, with less noble motives, do it because they know the side effects are so intolerable that the patient will stop the medication and not return for a second visit. This is a common ploy among many pain clinic physicians who view fibromyalgia patients as a source of annoyance and frustration, and somehow less deserving of their time and attention than those whose pain they consider more "real."
Among physicians who do attempt to help patients with fibromyalgia, medications from the antidepressant, anticonvulsant, anti-inflammatory, steroid, and opiate classes are typically tried. Trigger point injections, in which the 'tender points' are injected with a local anesthetic, are often recommended. They occasionally lead to temporary relief, but seldom provide long lasting benefit.
The best treatment has yet to be defined. During three years of neurology practice specializing in pain management, I saw hundreds of women with fibromyalgia. Many had been told by other doctors that their symptoms were "all in their heads," but my opinion is that this is a disease of the "heart" (limbic system, or emotional part of the brain). We do not yet know what the exact neurochemical changes are, but knowing that they are there is very important. Especially to all the women who have essentially been brainwashed into believing they're "crazy." They're not – but it's sometimes easier for the "all knowing" medical establishment to put that label on patients than to admit to its own ignorance.
The answer to the mystery of fibromyalgia probably lies in the field of neurobiology, the study of the nervous system and its interactions with the rest of the body. Until physicians can be persuaded to take the condition seriously, to stop ignoring the medical evidence, and stop dismissing it as "just another woman's thing," all we will be able to do is treat the symptoms. Too many doctors decline to do even that.
Copyright © 1998 Thomas W. Shinder, MD. All rights reserved.
W. Shinder, MD,
is a neurologist-turned-network systems engineer
who practiced medicine in Texas, Oregon and Arkansas before moving to his
present home in the Dallas-Ft. Worth TX metropolitan area.