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Published originally in Issues of Injury, Summer 1994.
By Sally James
Jeanne Willis used to have the professional outlook, as the rehabilitation manager for the state of Oregon's workers' compensation system, that often people claiming to have chronic pain syndromes were flakes. Then she was diagnosed with fibromyalgia (FM).
She fits the typical profile for the disorder, as a female in her 40s. The nightmare began for her with a case of the flu that never went away. Many fibromyalgia patients can point to an accident, injury or illness that begins their symptoms. Others report no special event.
In her occupation and her illness, Willis embodies the controversy that this article will explore. A self-described "Type A" person, Willis used to supervise 60 people. She went to graduate school while holding down a job and raising children.
"This can happen to people who don't hate their job," she explains. She knows that many believe FM could be just another manifestation of depression, or the mental disorder known as somatoform disorder, in which people exhibit physical symptoms for mental problems. She knows that claims managers often notice it is the unhappy employees who become disabled and can't return to work.
Knowing all that, it was downright "embarrassing" to get this diagnosis, Willis admits. She quit work after trying unsuccessfully to continue in spite of the pain and fatigue she felt. Her symptoms may never go away, according to her physician, a well-known author on FM, Robert Bennett, M.D., of the Oregon Health Sciences University.
Although experts disagree about the causes of fibromyalgia, most agree that there appears to be no cure for it. All the treatments known are aimed at controlling the sleep disturbance, pain, fatigue and other symptoms.
What is fibromyalgia?
There are many different theories and many arguments over this definition. There are some physicians who believe FM is a kind of social hysteria, a disease that gives credibility to people with mental problems who desire a physical explanation for symptoms. But, just last year, the World Health Organization finally distinguished FM from other rheumatic disorders and accepted the definition adopted by the American College of Rheumatology in 1990 and discussed in 1992 at what is called the Copenhagen conference.
To put it simply, a patient must present a picture of chronic generalized pain for more than three months and tell an examining physician of special pain when pressure is put on at least 11 of 18 specific tender points.
When this definition was first adopted in 1990, it allowed for a greater ability to compare research results and statistics on the problem. An explosion of research has put the subject in more than 100 published papers in the U.S. in one recent year. One of the Copenhagen conference participants hailed the World Health Organization decision as changing the climate for FM compensation. "These people will now have better chances that governments and insurance companies accept their condition," said Finn Kemper-Johansen, chair of the consensus panel, as quoted in an article in The Lancet, Sept. 1992.
If his comment proves true, it may create a financial nightmare. As it is currently defined, FM is a fairly common disorder. Estimates say 2 to 5 percent of the U.S. population has it, and that about 16 percent of all rheumatology visits in the U.S. are due to this problem. In a patient-oriented publication, Fibromyalgia Network, a physician said it costs the U.S. economy $9.2 million a year. (Dr. I. John Russell was lobbying Congress to appropriate more money for research when he made that estimate.) One Canadian life insurance company reported FM was responsible for 9 percent of all its disability payments.
Some patients have claimed workers' compensation for FM, claiming an accident at work or surgery for an injury was the "cause" of the FM. The work-relatedness of FM is in dispute. The editors of the Journal of Occupational Medicine wrote in 1992 that it is difficult to determine work relatedness. "A work association would be most likely in those individuals with a documented work-related trauma or surgery preceding the development of FM," they wrote.
Even as the diagnosis becomes acceptable in a political sense, it remains a medical controversy. There is no laboratory test that clearly distinguishes the FM sufferer from anyone else. While there are intriguing theories and lab results that point to possible causes, there is no proven cause. The familiar tangled web of chronic pain with psychological and social factors applies to disability from this disorder just as it does with many others.
In order to understand some of the intriguing research on FM, it is necessary to begin by understanding sleep. Sleep is complicated. It comes in different stages, and each of these appears to serve the body in different ways.
One of the characteristic symptoms of FM is sleep disturbance. Patients report being drowsy all the time, not getting enough sleep, or sleeping and waking up without feeling refreshed. In laboratory studies, it has been observed that FM patients have a greater than average amount of what is called a "non-restorative" sleep. What this means is that instead of falling into a deep sleep called stage 4, the FM patients seem to spend more time sleeping lightly. This disturbed sleep is defined and measurable by electroencephalogram.
There are many psychological effects from sleep deprivation, including depression and irritability, trouble with concentration and memory. All of these are often reported by FM patients, but it is difficult to distinguish whether the pain they are feeling is causing the disturbed sleep or the poor sleep itself is contributing to the pain.
On that score, there is recent research by Dr. Bennett suggesting some laboratory evidence that helps build a theory. During stage 4 sleep, a hormone called somatomedin C is released in the body. This hormone is useful to the body in many ways, and one of these is in repair of muscle tissue. His study showed that some FM patients have less somatomedin C in their bodies than healthy controls. (Arthritis and Rheumatism, Vol. 35, 1992.)
From all these results, and others, researchers have built a hypothesis. For reasons that are not clear, persons may be genetically predisposed, or through accident, or an acute illness, they may fall into a pattern of disturbed sleep and physical inactivity. Perhaps the lack of the compounds released during stage 4 sleep helps exacerbate problems with muscle tissue and results in the "tender points" that are so characteristic of the syndrome.
A mental model
While those searching for a physical cause of FM have proposed intriguing theories, they haven't yet proven a cause for the disorder.
In many studies of FM patients, they have been shown to suffer from heightened mood disturbances. However, the majority of FM patients do not meet the standard criteria for depression, according to Don Goldenberg, M.D., in his article "Fibromyalgia, chronic fatigue syndrome and myofascial pain syndrome." Some doctors have suggested that FM should be a newly defined form of depression. Others have suggested that depression itself can cause the body's immune response to be handicapped, and propose that this defect could play a role in the development of later disorders, such as FM.
What handicaps studies of the mental role in FM is that common sense informs us anyone with chronic pain is likely to be upset about it. Several research studies have therefore tried to compare FM patients with other chronically ill patients on mental health tests, such as the Minnesota Multiphasic Personality Inventory (MMPI). The results of at least one study showed the FM patients scoring no higher level of personality disorder on the MMPI than a comparable group of arthritis patients.
Another group of mental disorders is the somatoform disorders. These include several specific diagnoses, but generally they involve a patient reporting symptoms for which there is no known physiological mechanism. This is not malingering, according to the definition, because the patient is not intentionally causing the symptoms. Rather, the patient reacts to a psychological conflict or problem with a physical complaint.
Critics of the purely mental approach to FM point to the growing number of studies that show some subtle biochemical differences between FM patients and others. Some of these differences involve the complex pathways for experiencing pain, along what is called the psychoneuroendocrine axis. An FM patient may truly perceive pain differently, and thereby suffer more than a normal patient from the same injury.
"As with other pain syndromes, it appears most likely that fibromyalgia is a complex syndrome that will require input from both the medical and psychiatric models of symptom generation," wrote Dr. Bennett.
Nothing has been proven completely effective by many controlled trials in treating FM; however, many doctors prescribe antidepressants, especially amitriptyline. In some studies, amitriptyline has been shown to reduce some symptoms. It may help patients to sleep better, or to raise their threshold for pain so they don't perceive it as acutely.
While physical activity sometimes makes FM patients feel bad, one study suggests that aerobic exercise may help break the syndrome cycle that links inactivity with the deconditioning of muscles.
Several different articles suggest encouraging patients to pursue a gentle exercise program, and getting physical therapy advice on proper posture to avoid back and neck strain.
Almost all those writing about fibromyalgia agree that patients need reassurance, and that an important part of treatment is education. While much about the disorder remains in dispute, it is important for patients to know what FM is not: not life threatening, not damaging to internal organs, not crippling, and not necessarily disabling.
How this education is provided may have a financial as well as a clinical impact.
In Australia, there was an epidemic of repetitive strain injury (RSI), which included many cases of what was called occupational FM. The epidemic appeared to subside after political opinion swung against the diagnosis and compensation became more difficult.
One writer, Paul Reilly of England, wrote that doctors elsewhere in the world need to avoid "colluding unwittingly in the perpetuation of an Australian-type epidemic with its unfortunate effects on individuals in particular and society in general." He wrote in the Annals of the Rheumatic Diseases, 1993.
Several Australian doctors, reacting in a letter about Reilly's skepticism, wrote: "Those who act as agents for insurance companies should keep in mind that no demonstrable pathology doesn't mean no disorder or disability."
No doubt the controversy will continue well into the next decade over the real causes of fibromyalgia.
Is there a difference between chronic fatigue syndrome and fibromyalgia?
Rheumatologists distinguish between these two syndromes by saying that patients with FM have at least 11 of 18 tender points on their body, where an examining physician can put pressure and they will feel intense pain. Chronic fatigue patients don't reliably report these tender points, but in many other ways the disorders are indistinguishable. Both involve fatigue, sleep disturbance, headaches and pain in many different parts of the body, as well as numbness (paresthesias), irritable bowel syndrome, and often depression. The patient newsletter, Fibromyalgia Network, has this comment: "Several studies comparing FMS and CFS have failed to demonstrate any major differences. Therefore, these syndromes are treated in this newsletter as one and the same." One researcher proposed seeing CFS, FM and myofascial pain syndrome as "a spectrum of syndromes with overlapping features." (Don Goldenberg, M.D., Current Opinion in Rheumatology, 1991.)