How Debate Affects Care

As physicians debate whether a diagnosis of fibromyalgia is valid or useful, however, their patients are suffering real pain and often disability. Entering a medical arena where doctors doubt a patient's reality, dispute the findings of their colleagues or are simply unaware of the condition only augments the despair and frustration such patients feel.

Certainly that was the case for Sandra Levy, now 41, a marketing consultant in Long Beach, Calif., who began to have symptoms of fatigue and pain in her 20s. When she complained to her internist, he did multiple tests and couldn't find anything wrong. Finally he said, "I think it's depression."

"My feeling was that I'm so sore and tired – it makes sense that I'm depressed because of that," says Levy. "I was frustrated and mad. At that point I felt doctors dismissed women in general saying everything was depression. I felt it had to be something more."

In some cases, even when patients do receive a diagnosis, it sometimes arrives with a shrug of the physician's shoulder, a last-straw attempt to find a diagnostic label to offer a frustrated patient. "I have often seen patients pigeon-holed as having fibromyalgia when they don't quite fit the criteria," says Dr. Spiera. "I know patients don't like to hear, ‘I don't know what you have,' but I'm concerned about using the term too loosely for patients with aches, pains, fatigue and no laboratory evidence. It shouldn't be a wastebasket diagnosis."

For one thing, a tossed-off conclusion has its own dangers, especially if a more serious condition goes undiagnosed. Nor is it helpful to be diagnosed and sent home without treatment – as Maryrose Paxson, 61, of Allentown, Pa., found when her internist told her she had fibromyalgia.

"He gave me no encouragement, no medicine, no suggestions for a support group." Even when Paxson turned to a rheumatologist, the specialist said, 'If you're not getting better, it's something you're doing.'"

Paxson's case highlights another difficulty those with fibromyalgia face: the notion that they are difficult patients. In fact, when Arlene Ceglerski, 57, a medical office manager in Queensbury, N.Y., read an article written for doctors essentially identifying fibromyalgia patients as unappealing whiners, she was shocked. Ceglerski, diagnosed with fibromyalgia at 44, knows that's not the case. "People with fibromyalgia aren't unpleasant. They're frustrated people who have been to so many doctors. They're just at their wits' end."

Such stereotypes complicate the patient-doctor relationship as surely as the uncertainty that accompanies the diagnosis. "Fibromyalgia patients are great patients," says Dr. Barkhuizen. "But they take more time because they have so many complaints. They are sensitive to every [physical] stimulus and they worry that they have a bad disease. Their complaints sometimes overwhelm a doctor and he blows them off as a psychiatric case or says, ‘You just have fibromyalgia.'"

Further confounding the relationship is the skepticism a search-weary patient may bring to a new doctor. "Some patients come in defensive, a reaction that often has to do with months of trying to get a diagnosis," says Dr. Spiera. "But that skepticism has a negative effect on a doctor's ability to help them."

Of course skepticism works both ways, says Karen Moore Schaefer, an assistant professor of nursing at Temple University in Philadelphia, who herself has fibromyalgia. "People with fibromyalgia feel no one listens to them," she says. "So the trust in their health-care providers erodes."

For a fortunate few, the process of diagnosis isn't always a nightmare. At 40, Schaefer woke up one morning sore all over. She couldn't do the little things like mix chocolate chip cookies with a wooden spoon or push her vacuum across the floor. When she saw her internist he tested her for a number of conditions, ruling out lupus and rheumatoid arthritis. Equally important, he was a doctor she trusted, one who supported her situation and didn't let her doubt herself. "I was fortunate," says Schaefer. "Within two weeks I had a diagnosis of fibromyalgia."

Her doctor prescribed amitriptyline hydrochloride (Elavil) to improve the quality of her sleep and she felt better immediately. Schaefer felt relieved after she was diagnosed. "The label gives me something to work with," she says.

Schaefer maintains a strong relationship with her doctor and works closely with him on adjusting her medication to help her manage her symptoms. She's now enjoying life in the same ways she did before her diagnosis.