Pam, a short, pleasing looking woman in her early 50’s, has days when her body hurts so much that just arising from bed and going to the bathroom is an act of physical courage. “Some days are awful. Everything hurts. It always hurts but some days I cannot do anything at all.”
She is not alone. About 6 million Americans, the vast majority, about 90%, women, suffer from this chronic condition of unknown origin and with no cure. Its symptoms, mentioned as far back as the Old Testament, were first thought to be the result of inflammation of muscle or connective tissue. Over the years it has been variously referred to as chronic rheumatism, tension myalgia, or psychogenic tension. Because it produces pain (algia) in the body’s fibrous (fibro) ligaments and tendons and in the muscles (my), it was labeled fibromyalgia (FM) in 1976.
Generalized pain, aches, and stiffness are what characterize FM, but that’s not the full extent of the malady. Most people with FM also experience almost constant fatigue that can make just walking to the mailbox equivalent to running the Boston Marathon. This, in conjunction with its other common, yet diverse symptoms including, but not limited to, irritable bowel syndrome, trouble concentrating (called “fibro fog”), poor sleep, chronic low back pain, depression, anxiety, makes FM one of the most disabling and least understood illnesses.
Despite the comprehensiveness of “dis-ease” experienced by people with FM, it has, by and large, been viewed skeptically by the medical community. For in the clinic, FM cannot be detected or diagnosed by an objective test – there is no laboratory test to confirm its presence. As such, physicians, depending on their temperament, tolerance, and training can sometimes view persons presenting with this constellation of symptoms as crazy, lazy, or worse. It is common for persons with FM to spend years (one study says, on average, 7 years) going from physician to physician until they find one who finally makes the diagnosis – the glue that holds together the range of symptoms that plague their existence.
In 1990, the American College of Rheumatology developed diagnostic criteria for FM. They decided that FM is diagnosed by poking flesh. If the person reports having had widespread pain on the left and right and top and bottom of their body for at least three months you are almost there. However, you then, to “confirm it”; apply about 3kg of pressure (until your fingernail blanches) on 18 so-called tender points, insertion points where tendon attaches to muscle, and if the patient gives a definitive “Ouch, that hurts” to at least 11 of the 18 you can diagnose FM.
Imagine; modern medicine with its futuristic application of technology, with gadgets that can look inside the heart or the lungs or the colon, with surgeries where donor hearts and livers and kidneys can be implanted relying on someone to say “Ouch” 11 times to make a diagnosis. This is the crux of it, the reason more than a handful of physicians have such disdain for FM and its sufferers: they don’t know how to see it, how to measure it or how to effectively treat it. In short, FM is a mystery many physicians would rather not contemplate.
Professor Daniel Clauw, Executive Director of the Chronic Pain and Fatigue Research Center at the University of Michigan, thinks that pressing tender points to diagnose FM is not only ridiculous but counterproductive and disrespectful to patients. “There is nothing magical about pressing 18 stupid areas of the body.” He believes that tender points are often sensitive as a response to the psychological distress of having FM, not a means to actually diagnose it. He contends that, in fact, there is ample evidence that FM is real, not merely the subjective musings of the patient. “Whether it’s using functional imaging, such as functional MRI, evoked potentials, experimental pain testing, sensory testing – there is a tremendous amount of evidence suggesting that the pain in Fibromyalgia is very real and that it can be seen objectively. Essentially with the person with Fibromyalgia there is an increase in the volume setting in the pain processing such that they don’t have damage or inflammation in the muscles or joints or tissues in order to experience pain. It’s just that their volume control is turned up too loud.”
Among practicing physicians, however, the consensus still appears to be that FM is not a disease in the way that, for example, diabetes or arthritis are. This de-legitimization goes a long way toward explaining why many people with FM develop a penetrating aversion toward medicine and its practitioners.
As one particularly blunt woman from Texas said during a meeting of FM sufferers, “I’ve been treated like crap by doctors, like I’m some kind of nut because I have this. It’s like if they can’t figure out what’s wrong with you they have to label you as mental. It’s very discouraging”
Clauw believes, or at least hopes, that physician’s attitudes toward FM will change as genetic studies begin to identify people with polymorphisms that might affect sensory processing and as new treatments are developed that help “turn down” the ramped-up pain processing volume control, “As treatments have been developed that work fibromyalgia is being more widely accepted as a legitimate, scientifically credible disease.” In other words, FM might become increasingly viewed as legitimate because physicians are becoming better able to do something definitive to attenuate the suffering.
For many, like the lady from Texas, however, the damage might be irreversible. Having been thought of as mentally defective or a malingerer may forever sour her from seeking medical therapy and, as such, might compromise her ability to take advantage of improved treatments for FM that come down the pike.
Harris RE & Clauw DJ. How do we know that the pain in fibromyalgia is “real”? Current Pain and Headache Reports, 2006:10;403-407.