After eight years and 10 doctors, Becky Heiman of Lacon, Ill., finally learned what her problem was. Best of all, she learned what it wasn't: It wasn't fatal. And it wasn't mental.
Plagued by widespread aches and pains - sometimes agonizing, always worse in cold weather -- the 36-year-old mother of two sought a doctor's help. He told her she had neuritis.
His was one of many misdiagnoses. Another doctor saw her symptoms as indications of multiple sclerosis. They weren't. Nor were they, as other physicians had said, "housewife's syndrome," "just nerves," or "all in your head."
She knows now that she has fibromyalgia - a common disease, commonly undiagnosed. Once it is recognized, the key to relief lies in getting the patient's muscles to relax.
The muscles have become too tight in response to pain. Dr. Louis A. Healey, clinical professor of medicine at the University of Washington, illustrates this. He will ask a patient to clench a fist tightly and keep it clenched. Within about a minute, pain begins to spread up the arm.
In fibromyalgia, Dr. Healey says, pain intensity is often greatest in certain locations, including the bundle of muscles in back of the neck and shoulders, as well as at the sides of the breastbone and at bony points of the elbows and hips. These sites can act as tender points, starting the pain. A vicious cycle may develop: The original pain, starting in a tender point, causes muscles to tense in an effort to protect the painful area. The resulting muscle spasm then becomes a source of pain as well. Physical and emotional fatigue set in. And anxiety and a depressed feeling can make the pain seem worse.
Treatment, depending on the individual's needs and responses, ranges from a program of exercise and proper rest to physical therapy, heat, massage, swimming, shower massage, biofeedback, yoga and medication. Perhaps the strongest restorative of all, however, is acknowledgement from a doctor that the disease is physical, not emotional.
Says Dr. John J. Calabro, professor of pediatrics and medicine at the University of Massachusetts, "Fibromyalgia affects 10 million Americans, most of them women. And it has been misdiagnosed 95 percent of the time."
It is, Dr. Calabro adds, a rheumatoid condition that affects the soft tissues around the joints, unlike arthritis, which affects the joints themselves. Says Dr. Healey, "It is by far the most common musculoskeletal problem in relatively young people. Above 50, osteoarthritis - wear-and-tear arthritis - leads. But below that age, it's fibromyalgia, which is many times more common than rheumatoid arthritis."
In January (no date on this article), the Arthritis Foundation called fibromyalgia "a very common ailment" surrounded by "a great deal of confusion."
The confusion is understandable. The typical sufferer simultaneously experiences chronic aches, pains and stiffness in many areas of the body - muscles, ligaments, tendons, in and around joints. There's often poor sleep and fatigue. Sometimes symptoms are worse on waking but, in most cases, discomfort increases as the day goes on. And symptoms usually are aggravated by cold weather, humid weather, inactivity or too much activity.
It's all too easy to dismiss anyone with so many scattered complaints as neurotic, depressed, a "psychogenic rheumatic."
Even another name applied to the syndrome - fibrositis - has added to the confusion. The suffix "itis" always means inflammation. So fibrositis means inflammation of fibrous tissue. But there is no evidence of such inflammation in fibromyalgia.
Its symptoms occur in otherwise healthy people and in those with such problems as rheumatoid arthritis, osteo-arthritis, or an underfunctioning thyroid gland. Though their other problems may be treated effectively, the patients are left with symptoms of the undiagnosed fibromyalgia.
Lab tests can't detect fibromyalgia. They show "normal" results, say Dr. Robert M. Bennett, head of the University of Oregon's rheumatology section. This, combined with "no well-defined cause," he adds, has led many physicians "to regard the condition as purely emotional" or "a form of malingering."
It has taken a long time, but the pieces of the puzzle have been coming together. One man instrumental in putting them into place has been Dr. Calabro - and for a very special reason.
Some years ago, Calabro was asked to see a young woman who later would become his wife. The future Josephine Calabro then was 25 and working at the United Nations in New York when her troubles began. First came the muscle aches in her upper and lower back, then in her elbows, shoulders, hips and knees. She had seen many physicians. Most worrisome was one diagnosis: rheumatoid arthritis. It left her fearing possible future crippling.
When Calabro examined Josephine, he could find no inflammation, no indication of rheumatoid arthritis. There were no joint swellings, no abnormalities in laboratory tests. But he did detect "tender points" - small sites of excessive local tenderness - six pairs of them, one of a pair on one side of the body, the other on the opposite side.
She had, he was convinced, fibrositis - or fibromyalgia, as he and other physicians prefer to call it.
"I promised my wife soon after we were married," says Calabro, "that I would really make a thorough study of fibromyalgia." He did, with the aid of a growing corps of colleagues that included Dr. Healey and Drs. Muhammad B. Yunus and Alfonse T. Masi at the University of Illinois College of Medicine in Peoria. They found that if doctors are alert to its symptoms, fibromyalgia is frequently identified. In 1979, of 285 new patients seen at the University of Illinois rheumatology clinic, 20 percent were diagnosed as having fibromyalgia, compared to a previous 6 percent.
"One of our patients," notes a report by Drs. Yunus and Masi, "was refused a scholarship from the Air Force. The physician involved in certification of medical fitness had never heard of fibromyalgia. Despite explanation of the disorder, the physician was unconvinced that fibromyalgia was not a crippling condition." By mid-1981, guidelines for the diagnosis of fibromyalgia were being reported by Yunus and other physicians and published (American Family Physician, May 1982; Seminars in Arthritis and Rheumatism, August 1981) to alert doctors and, often, patients to suspect the disorder.
Aches and pains or stiffness in three or more body sites for at least three months. These occur even though (1) there is no indication of injury and (2) laboratory tests and x-rays reveal neither infection nor a rheumatic disease. All fibromyalgia patients experience the presence of tender points, which can be extremely painful when pressed. Usually five or more sets can be detected.
Much can be done for victims, but most important, says Yunus, is the reassurance that fibromyalgia is controllable and NOT imaginary.
Medication may be prescribed to easy pain. In Calabro's experience, the drug ibuprofen has often provided dramatic relief; so, too, have such painkillers as fenoprofen and naproxen. In some cases, injections of a local anesthetic or steroids into tender points result in major improvement. (Once the pain is relieved, the muscles relax and the condition eases.)
The importance of rest for fibromyalgia patients has been underscored by two Canadian physicians, Dr. Harvey Moldotsky, professor of psychiatry at the University of Toronto, and Dr. Hugh Smythe, chief of rheumatology at The Wellesley Hospital in Toronto.
Studying fibromyalgia patients in a sleep laboratory, they found that a failure to get normal amounts of deep, non-dreaming sleep was characteristic. The doctors then studied healthy volunteers - six men aged 19 to 24 - who, for three nights in the sleep lab, were subjected to periods of noise just loud enough to disturb their deep sleep but not loud enough to wake them. Strikingly, all of the men temporarily developed the aching, stiffness and fatigue of patients with fibromyalgia.
"I encourage patients to get into fitness programs," says Dr. Moldofsky. "Exercise has been shown to help deep sleep." To promote better sleep for those with fibromyalgia, Drs. Smythe and Moldofsky - and now other physicians as well - sometimes prescribe a small bedtime dose of an antidepressant. "These drugs," emphasizes Moldofsky, "aren't just antidepressants; they also have helpful effects on pain and seem to on sleep. Patients taking them - in much lower doses than those used for mental depression - say their sleep is more restful, deeper, and when they get up in the morning they feel energetic and often feel no aches and pains."
Awareness of fibromyalgia - of what it is, how common it is, and what can be done to combat it - is beginning to percolate through the medical profession. But there are physicians who lack the awareness.
Urges Dr. Yunus, "If you suspect you have fibromyalgia, by all means see a doctor. But if he tells you that it's all in your head, discard that advice and go to somebody else."
Any comments? Send them to Bill Jackson at firstname.lastname@example.org
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