Mystery Maladies Pose Challenge for Doctors, Patients

From the WebMD Archives

Aug. 29, 2000 -- Whether it's a constant headache, fatigue, muscle aches, or stomach woes, many of us sometimes experience health problems that seem to have no medical explanation. And these unexplained illnesses, particularly if they're long-lasting, can deeply affect a sufferer's quality of life.

Just ask registered nurse Constance Scott, RN, CRRN, who found herself in near-constant pain after a fall on the job. It got so bad, says Scott, 54, that even her clothes hurt her. She could no longer work an eight-hour shift, and was in tears after three.

Her treatment experiences were also painful. Physical therapy only made things worse. She went to see a rheumatologist, whom she says "just poked" her in different places on her back and asked if it hurt. (It did.) And the doctor's suggestion to simply take pain pills wasn't good enough for her.

Eventually, she found relief through a program that incorporated aspects of alternative medicine. But dissatisfaction with initial care is hardly unusual among people with difficult-to-diagnose symptoms. Many primary care doctors need to learn how to better deal with unexplained symptoms to help improve their patients' lives, according to a study published in the journal General Hospital Psychiatry.

"Currently, the management of these symptoms is often unsatisfactory for both patient and physician," writes study author Arthur J. Hartz, MD, PhD, professor and research director of the department of family medicine at the University of Iowa College of Medicine in Iowa City.

Half of the more than 400 patients surveyed for the study reported having unexplained symptoms "usually" or "always," and 75% of these patients had sought help. While few said their physicians seemed completely unconcerned about their unexplained symptoms, 40% to 50% thought their doctors showed only moderate concern.

And among the nearly 300 primary care doctors polled, only 14% said they were highly satisfied with their management of their patients' unexplained symptoms, although some 25% said they had a "very good or excellent ability" to manage unexplained symptoms.

"Doctors have more of a medical model for treating strep throat or heart disease or other physical ailments, and they have some medical models for treating psychological problems like depression, but when it comes to unexplained illness or symptoms, they don't really have an approach that is as established," Hartz tells WebMD.

The study found that those doctors who felt best about treating and managing unexplained symptoms were more likely to be in a solo practice and to have practiced in the same location for at least five years -- situations that help them establish close relationships with patients.

"Having a consistent primary care physician has particular benefits for symptoms that are difficult to evaluate," Hartz says. He and his colleagues also say that specific treatments should be developed for various unexplained illnesses, and that primary care physicians should be informed about these treatments.

Kenneth Dardick, MD, a family physician in Storrs, Conn., agrees with the study's findings. "It is very challenging to understand the root of an ailment when there is no obvious cause," he tells WebMD.

The toughest symptoms to deal with are fatigue, dizziness, lack of energy, and poorly defined joint pain, he says. Often, these ailments are related to depression or stress, not to cancer, diabetes, or heart disease.

Some unexplained symptoms can be comfortably ignored, particularly if they are not persistent, he says.

"Having a long-term relationship with a doctor over time can help solve unexplained conditions, as can having a good sense of who you are and how your body works," he says. "The challenge for the doctor is to know which symptoms in which patients need to be investigated further."

For patients, the challenge may be to find a doctor and a treatment program that's right for them.

After her fall, Scott developed post-traumatic fibromyalgia, chronic fatigue syndrome, and an attitude. When her workers' compensation treatments ended, she joined a program of integrated medicine at Thomas Jefferson University Medical Center in Philadelphia. There, she found an approach that combined Western medicine and alternative therapies.

As a Native American, Scott found the holistic approach fit with her views on health. But most important, she found that people listened to her. "People really need to find that chemistry with that doctor or therapist," she says. "You need to think you are a partner with this. People have to listen to what the client is saying."

People with symptoms that doctors find difficult to diagnose must be proactive in seeking relief, says Paula Payne, who started a fibromyalgia support group and a "Living with Fibromyalgia" web site. Fibromyalgia is an often-puzzling condition that causes pain and stiffness in the muscles, tendons, and ligaments.

"Many of the people on the Internet tell me that they have gone from doctor to doctor with no idea of what is wrong," she says. "At some point, they hear about [fibromyalgia], they research it, and on their own they seek out a doctor that treats it in their area."

Payne knows that treating an illness like fibromyalgia can be troublesome for physicians, too.

"Many of us get worse as time goes by, and that is probably very frustrating for a doctor," she says. "This is when it is so important that the health care team that you have selected is interested in treating [fibromyalgia] and is willing to continue to try new things in hopes of someday finding a lasting treatment or a cure."