By Kelli Whitlock

When Sandy Williams describes the symptoms of her disease, she does not use medical terms, refer to test results or rattle off percentages and statistics. She details her symptoms in a language easily understood by any working woman with an active lifes tyle, a husband, two adult children and two grandchildren.

She changed jobs two years ago to reduce work-related stress. She tires after only 30 minutes of light yardwork. She can't lift her 1-year-old granddaughter.

A doctor might describe her symptoms quite differently, perhaps suggesting that she experiences headaches aggravated by stress, fatigue, muscle aches and dizziness.

Williams offers a self-diagnosis of a health condition that has required lifestyle changes. Her doctor of fers a diagnosis of fibromyalgia.

"My life in the last year has changed tremendously because of this," says Williams, a 46-year-old Athens resident who was diagnosed eight years ago with a disease that afflicts more than 6 million Americans.

Fibromyalgia is a rheumatic disease with no known cause or cure. Its symptoms include widespread pain, muscle tenderness, headaches, fatigue, memory or concentration problems, and a host of other disorders. It is a chronic disease people with fibromyal gia feel pain or discomfort much of the time. Conventional treatments have shown limited success, leaving many people unable to function efficiently at home or work.

As with many chronic pain disorders, scientists and physicians studying fibromyalgia continually face the obstacle of trying to develop appropriate treatments for a disease that is poorly understood. Some of the symptoms can be treated with medication, but doctors are finding the type and severity of pain is different in each patien t, meaning a standard treatment regimen is unlikely.

"I think that historically, doctors have tried to understand pain as a simple sensory experience that is directly proportional to tissue damage. But in my experience, that doesn't hold up," says Francis Keefe, a professor of health psychology at Ohio University.

< /table> Keefe is one of several Ohio University faculty and researchers engaged in the study of chronic pain disorders such as fibromyalgia, arthritis, chronic tension headaches and migraines. Keefe is leading a three-year, $1.1 million project to study fibromyalgia, an effort supported by the National Institutes of Health (NIH). His collaborators include the Duke University Medical Center and Ohio State University. The project, involving fibromyalgia patients in Athens and the surrounding area, Nort h Carolina and Columbus, is one of the first large controlled studies to examine how coping skills training and exercise training can help patients with fibromyalgia.

Since Williams first read about the study on a flier in her doctor's office, she has welcomed the information and connections to other patients her participation in the project has brought her. She has learned of a fellow church member with fibromyalgia and a support group offered by OU's College of Osteopathic Medicine for people with the disease. More importantly, Williams has discovered new information about the disease and found resources to help her in the daily struggle of living with a chronic illness.

"When my chiropractor first told me he thought this was what I had, he warned me that any other doctor would tell me he was crazy," she recalls. "He told me I probably wouldn't be able to find anyone who could help, and he was right."

For years, Williams coped with the changes the disease brought to her body. F ibromyalgia is characterized by pain in 11 of 18 standard tender points on the body, sleep problems, numbness and tingling, fluid retention, crampy abdominal or pelvic pain, diarrhea, and several other symptoms.

The onset of the disease typically occurs between age 20 and 50, but the illness also can affect children. Fibromyalgia is more common in women and about 20 percent of fibromyalgia patients experience remission, but it's not known if remission is permanent.

Williams is one of severa l people enrolled in Keefe's NIH study. Participants are randomly assigned to one of four protocols when they sign up for the program. In the waiting list/control group, which includes Williams, patients keep daily diaries for 16 weeks describing their normal activities and experiences with pain and other disease symptoms. Participants in the coping skills training group attend 14 weekly group sessions at which they are taught to control their pain and other symptoms through relaxation methods, goal se tting, imagery and relapse prevention techniques.

The physical exercise training regimen is a supervised exercise program that meets three times a week for 16 weeks. Another protocol offers a combination of these two training programs for a 16-week period.

"We're hoping to determine how effective these treatments are and what type of symptoms respond best to these treatments," Keefe says. Researchers also hope to learn more about individual response to pain, the factor that makes treatme nt of fibromyalgia and other chronic pain disorders so difficult.

"What is striking to me is the incredible individual differences in how people respond to the experience of pain," says Keefe, who has studied chronic pain disorders for more than 20 years. "If you have two people with moderate arthritic damage to a joint, one person may have very severe pain and say that they can't go on with this pain. But another person will report very little pain and be very active and be optimistic about the future."

Keefe has conducted many studies designed to explore the ways in which different people respond to pain. One study that attracted much media attention earlier this year looked at how men and women cope with pain. The findings, presented in April at an NIH conference on pain research, suggest that women are more likely than men to use coping strategies such as relaxation to deal with arthritic pain. The study also found that, although women reported more pain than men, they were better a t decreasing the emotional impact of severe pain on their lives.

"The study suggests women may be better at regulating the emotional aspect of pain and therefore able to limit its emotional consequences," Keefe says. "Certainly, in our society, we're taught to act in certain ways. Men don't show their feelings and don't seek out assistance as readily as women. That may very well be what's going on in this case."

Part of the many aspects of the fibromyalgia study, which got under way in Ohio this spring, will be to examine individual responses such as these in the hopes that the information will help physicians prescribe more appropriate treatment for their fibromyalgia patients.

It will be at least another two years before the researchers begin analyzing their findings. But for people like Williams, who have been waiting nearly a decade for some good news, the promise of hope and a less painful life is worth the wait.

"There have been many times I've wanted to give up," s he says, as she glances toward the photos of her granddaughters that cover a wall in her office. "But you just have to keep going."

Kelli Whitlock is a science writer in University News Services and Periodicals and editor of Perspectives, Ohio University's biannual magazine of research and scholarly activity.

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Francis Keefe Photo: Rick Fatica