By Mirinda J. Kossoff, published on May 1, 1999 - last reviewed on June 9, 2016
"I hurt all over." That's the cry of millions of Americans who are afflicted with fibromyalgia, the latest buzz diagnosis in the epidemic of chronic pain sweeping the U.S. What do we know about this mysterious ailment—and how to control it?
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 U.S. 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 sufferers' common cry.
Complaints of diffuse pain have been documented since Biblical days and no doubts were voiced earlier. But it was not until the start of the 20th century that the condition acquired a scientific label, fibrositis, when a Scots 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 though 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% and 10% of the general population, making fibromyalgia more common than rheumatoid arthritis. In the U.S., estimate the American College of Rheumatology and the National Institute of Arthritis and Musculoskeletal and Skin Diseases, there are between three and six million sufferers.
The medical establishment has tended to regard generalized pain with skepticism, especially in the absence of a physiological explanation for the hurting. Another reason: the vast majority of complainants are women. In the U.S., where 85% of sufferers are female, doctors have sometimes dismissively termed the ailment "tender lady syndrome."
That attitude is now slowly changing, thanks to a cadre of researchers, ranging from psychologists to neurologists and rheumatologists, who have launched intensive investigations into the condition. As of now, 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 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 (ACR) 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 David S. Caldwell, M.D., of Duke Medical Center in Durham, North Carolina. "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, M.D., 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, Ph.D., 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.
What's more, evidence indicates that the brain changes with chronic pain. Indeed, say researchers, persistent pain can lead to a heightened sensitivity to pain that spreads far beyond the site of the original injury. In other words, pain can create its own feedback loop. Dr. I. Jon Russell of the University of Texas Health Sciences Center in San Antonio suspects that FMS patients exemplify this phenomenon. "In fibromyalgia, we don't see discernible tissue damage that would cause pain," says Russell, an M.D. and a Ph.D. in biochemistry. "It appears that within the central nervous system, something has happened to the pain perception process."
In studies with FMS patients, Russell and his colleagues have detected abnormal levels of several chemicals that relay signals around the nervous system. The most dramatic, says Russell, is an elevated level of the neurotransmitter, Substance P. High levels of Substance P, which is found only in the spinal fluid, apparently cause neurons to send pain messages to the brain, even without an injury to a peripheral part of the body. Concentrations of three other brain chemicals—dopamine, norepinephrine and serotonin, which helps regulate levels of Substance P—appear to be abnormally low in FMS patients.
Depressed levels of serotonin may also help explain why FMS is more prevalent in women than men. For as yet unexplained reasons, women naturally appear to produce less serotonin than men, notes Russell, which might account for the lower pain threshold in women.
Russell, like other scientists working in the field, predicts that fibromyalgia will follow the path of other mysterious ailments. In 1979, he notes, rheumatoid arthritis was considered a psychological illness, its symptoms exacerbated by stress and life changes. Today, we know that stress has nothing to do with it. "Fibromyalgia is undergoing the same transition," says Russell.
For FMS patients now struggling with debilitating symptoms, that may not be much comfort. As of now, there is no sure-fire treatment, much less a cure. Sufferers bounce from conventional doctors to alternative healers, from making lifestyle changes to ingesting dozens of drugs—spending hundreds, even thousands, of dollars in the search for relief.
When I was first diagnosed early in 1998, I launched into overdrive, trolling support groups, newsletters and the Internet, to learn everything I could about the illness and possible treatments. During the first month after my diagnosis, I tried physical therapy, chiropractic manipulation, herbal supplements, dietary changes, massage therapy, magnets and water aerobics.
FMS specialists urge patients to relieve stress by adopting relaxation techniques and getting regular exercise. As for drugs, experts recommend over-the-counter analgesics to relieve pain. To restore regular sleep, low doses of tricyclic antidepressants are sometimes prescribed.
A few clinicians offer extreme measures to desperate sufferers. Dr. Jay Goldstein of Anaheim Hills, California, rolls out an arsenal of 80 drugs, administering one after another, sometimes within the span of an hour, until a patient discovers one that works. Wendy Hunter, who spent a grueling week sampling 18 drugs, found relief with lamotrigine (Lamictal), a mild anticonvulsant normally used to treat seizure disorders. "It was like a vacation from my body," she recalls. But the prescription drug worked for just a month.
Because conventional medicine has so little to offer, many FMS patients turn to alternative therapies. One popular remedy is the dietary supplement CoQ10. The antioxidant reportedly helps clear "fibrofog," the mental fuzziness that often accompanies a flare-up. Another favored supplement is magnesium malate to control pain. FMS patients are also turning to magnet therapy, a remedy long popular in Japan, where magnets are embedded in mattresses, insoles, and wrist and knee wraps. The idea is that magnetic energy stimulates increased blood flow and oxygen to the painful site, relieving discomfort.
What's clear, say FMS sufferers and experts alike, is that the patients most successful in controlling their symptoms are those who take charge of their own care. Hunter, now relies on getting 10 hours of sleep a night, performing regular exercise and watching her diet—by eliminating caffeine and alcohol and eating smaller, more frequent meals. Says she: "I realize there is no magic cure and that I have to work at being fine again."
One of the thornier issues is whether FMS patients should qualify for Social Security disability payments. To date, the Social Security Administration has no listing for FMS, so in terms of a disability claim, the syndrome doesn't exist. FMS patients do, however, sometimes get disability payments by claiming mental impairment.
Attorney Jeff C. Mapes, of Scappoose, Oregon, who has won some disability cases for FMS patients, says Social Security Administration judges are skeptical of FMS for precisely the same reason that the medical community has problems with the ailment: the lack of objective proof.
"When I'm considering representing a client with FMS, I look for a Mother Teresa level of credibility," observes Mapes. "I look for someone who has historically been highly motivated, an achiever with an increasing level of frustration about not being able to function well. I look for indications that other aspects of the person's life have suffered, that the person can't go to church or to PTA meetings or participate in other activities he or she used to enjoy."
Some FMS experts aren't convinced that applying for disability is the wisest course in any event. "Disability doesn't provide enough financial support, and they'll hurt at home just as much as at work," says Dr. I. Jon Russell of the University of Texas Health Sciences Center in San Antonio. "I advise my patients to stay within the workforce and limit their hours."
The Fibromyalgia Network (P.O. Box 31750, Tucson, Arizona 85751; toll-free phone: 800-853-2929) publishes a quarterly newsletter ($28 annually) with the latest information on FMS and other related conditions. The Network also maintains a Web site with lists of resources and basic information: www.fmnetnews.com/
The Oregon Fibromyalgia Foundation (OFF) has a Web site written and maintained by researcher Robert M. Bennett, M.D., with articles on FMS and chronic pain: http://www.myalgia.com/
The Arthritis Foundation publishes the Fibromyalgia Wellness Letter six times a year with the latest research findings on FMS, tips on exercise and nutrition, mind-body techniques and advice on coping with FMS. The Foundation's toll free number is 800-933-0032.
There are also several on-line information and discussion groups, including CO-CURE: the Chronic Fatigue Syndrome and Fibromyalgia Information Exchange (http://www.co-cure.org/readfm.htm); FIBROM-L: Fibromyalgia Discussion Group (http://www.fmscommunity.org/); and FMS-CFS Friends International Online Support Group (http://www.fms-cfsfriends.com/).