"I Hurt All Over"

Oh, the chronic pain of fibromyalgia. Millions of Americans suffer from it. But who knows the causes? Or if there is even a cure.

By Mirinda J. Kossoff, published on May 01, 1999 - last reviewed on July 20, 2009

"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.