Wendy Hunter’s troubles began her senior year of high school, when she began experiencing pangs in her joints and chest, and feeling tired all the time. The problems grew so severe that she had to drop out of class and be tutored at home.
Her doctor diagnosed her as having Lyme disease and treated her with intravenous antibiotics. But Hunter continued to suffer, so much so that she had to defer entering college.
Her physician could find nothing wrong with her, and, indeed, Hunter looked normal and healthy. Eventually he gave up on her case, launching her on a quest for relief. She dragged herself from doctor to doctor, only to be told that she really didn’t have a physical problem and what she actually needed was a psychiatrist. Friends deserted her.
“They didn’t know how to act around me,” says Hunter of the ordeal that began nine years ago. “I started to wish I had cancer or something to show for my symptoms.”
Finally, she landed in the office of a sympathetic physician who gave her a new diagnosis: fibromyalgia.
Fibromyalgia is the latest buzzword in the epidemic of chronic pain sweeping the nation.
More than a third of Americans will suffer from persistent pain at some point in their lives, studies suggest, and the United States now has close to 1,000 public and private centers dedicated to treating pain.
The financial toll is enormous as well. According to the National Institutes of Health, pain costs the U.S. economy more than $100 billion annually in health care and lost productivity.
Pain has always been an elusive phenomenon. It is the mind-body conundrum writ large, an amalgam of emotional perception and physical sensation. And no one knows where one leaves off and the other begins. That is especially evident in fibromyalgia, an enigmatic ailment with no known cause, no simple diagnostic test and no easy treatment or cure.
Its hallmark and only certainty is suffusing pain. “I hurt all over” is the common cry.
Complaints of such pain have been documented since Biblical days, and no doubt were voiced earlier. But it was not until the start of the 20th Century that the condition acquired a scientific label, “fibrositis,” when a Scottish pathologist claimed to have detected under the microscope signs of inflammation in fibrous tissue–muscles, ligaments and tendons–taken from the bodies of hurting patients.
The term stuck, even through other scientists failed to confirm the findings, and in the 1930s, it was joined by another similar term, “fibromyositis,” to describe generalized musculoskeletal pain. But interest in understanding the condition itself languished until 1977, when rheumatologist Hugh Smythe and psychologist Harvey Moldofsky published a seminal paper in the Bulletin of Rheumatic Diseases.
The pair, who are now affiliated with the Western Hospital in Toronto, Canada, detailed the painful condition and proposed a definitive set of diagnostic criteria.
Today, there is general agreement that, unlike other rheumatisms that it can mimic, the illness is not an inflammatory condition–hence the term “fibromyalgia,” which simply means pain in the body’s fibrous tissues.
It is an ailment known worldwide. Studies from diverse nations, including Norway, Germany and South Africa, put the number of the afflicted at between 3 percent and 10 percent of the general population, making fibromyalgia more common than rheumatoid arthritis. In the U.S., the American College of Rheumatology and the national Institute of Arthritis and Musculoskeletal and Skin Diseases estimate there are between 3 million and 6 million sufferers.
The medical establishment has tended to regard generalized pain with skepticism, especially in the absence of a physiological explanation. Another reason: The vast majority of complainants are women. In this country, where 85 percent of sufferers are female, doctors have sometimes dismissively termed the ailment “tender lady syndrome.”
That attitude is slowly changing, thanks to a cadre of researchers, ranging from psychologists to neurologists and rheumatologists who have launched intensive investigations into the condition.
However, it’s still easier to define what fibromyalgia is not than what it is: It is not a disease, it is not progressive, and it is not life-threatening. Medically, fibromyalgia is a syndrome (FMS), a collection of symptoms, including widespread pain, which can vary from one individual to the next in type and severity.
It’s a slippery syndrome with symptoms–headache, morning stiffness, numbness and tingling in the hands and feet, pain of the chest, lower back or jaw, insomnia, mental fuzziness–that are associated with a host of other ailments, including depression, lupus, rheumatoid arthritis, migraine and irritable bowel syndrome.
That makes diagnosis a confusing prospect. In fact, says a recent report in Arthritis and Rheumatism, patients typically suffer symptoms for nearly eight years before getting a diagnosis of FMS.
Without a CAT scan, blood measure or other conclusive laboratory test, physicians in making the diagnosis rely on a patient’s assessment of pain and their own observations during a physical examination. FMS patients tend to have an exaggerated pain reaction to pressure in certain parts of the body.
According to guidelines issued earlier this decade by the American College of Rheumatology and a world congress of specialists, there are 18 such tender points, nine on either side of the body, symmetrically paired. A patient meets the criteria for FMS if she or he has 11 tender points and also pain above and below the waist on either side of the body for longer than three months.
“What if the patient has 10, but not 11, of the identified tender points?” asks rheumatologist Dr. David S. Caldwell of Duke Medical Center in Durham, N.C. “Many of us feel that if you’ve excluded any other disease or explanation for the symptoms, and the patient describes pain and has the other frequently associated problems, like sleep disorder, migraine headaches and so on, then regardless of whether they have the prescribed number of tender points, the diagnosis is likely to be FMS.”
The big question, of course, is what triggers such sensitivity. Does FMS have a physiological basis, or is it a psychological disorder? Here, too, the picture is confusing.
Clearly, there is a strong emotional component. Dr. Frederick Wolfe of the University of Kansas, who chaired the ACR committee that drafted the FMS diagnostic criteria, calls it primarily a “distress disorder.”
“It’s hard to walk into the examining room and see a patient who looks at you with anger and despair,” he observes. “You know it’s another FMS patient. You say, `What’s the trouble?’
They say, `I hurt all over.’ When someone talks like that, you know the issues aren’t pain but unhappiness, like the single mother trapped in a menial job with kids to support.”
Yet Wolfe also sees patients who have no signs of emotional distress. Many researchers today suspect that the condition arises from a mix of factors, some of them physiological.
FMS seems to run in some families, leading scientists to speculate there may be an underlying genetic vulnerability, which might be set off by a traumatic event, like an auto accident, or a bacterial or viral infection. (Or the syndrome may be a learned way of coping with stress, passed from one generation to the next.)
Some research also indicates that childhood trauma or abuse may embed itself in the nervous system and make a person more susceptible to pain later on.
How do we register pain? The most widely accepted scientific explanation is the gate-control theory put forth in 1965 by Canadian psychologist Ronald Melzack and British physiologist Patrick Wall.
According to the pair, an area running along the top of the spinal cord, called the dorsal horn, is crucial to the transmission of pain signals from the site of an injury to the brain. The horn acts as a sort of hatchway, controlling the intensity of signals and sometimes even halting them altogether.
But that’s only half the story. The brain isn’t a passive receiver. It can initiate signals of its own and send them back through the gateway to the rest of the body.
“What’s going on in the brain is very important,” says Frank Keefe, a specialist in psychophysiology at Ohio University in Athens. “Thoughts and feelings can have a great impact on the pain experience.”
It is the brain that creates the perception of pain. Thus, though “it’s all in her head” is often applied derisively to FMS patients, the truth is that, to a great degree, all pain is in the head.
