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. From Confusion to Clarity Certainly pain and the journey through life with chronic pain changes people. Wolfe, for example, found the stress of an undiagnosed condition unbearable. She began to feel suicidal and sought help from a psychologist. But counseling only made her feel worse – as if she weren't being assertive enough about her own care. Still, when her second acupuncturist suggested she had fibromyalgia, she ignored him. "I had read about fibromyalgia and I thought it did not apply because I only had pain in my back." After a six-month whirlwind of doctor visits, Wolfe was considering back surgery. "At some point you think ‘I don't want to live like this.' I kept searching even though I had doctors saying 'I don't know what to tell you.'" The problem of living with such a question mark becomes circular, says Dr. Barkhuizen. "As the pain amplifies, it becomes distressing, and then the pain gets worse," he says. "And when you're in chronic pain, denied a diagnosis and you look normal, it becomes ingrained in your mind that you are a psychiatric case. But once you give fibromyalgia patients a diagnosis to hang their hats on, the reaction is, 'Wow, I'm not crazy.'" That was exactly Wolfe's reaction when an endocrinologist finally diag-nosed her condition as fibromyalgia. "He was so completely reassuring just by identifying my symptoms, by explaining what I had and how long it had been going on," says Wolfe. "He validated that I wasn't crazy." Sandra Levy felt that same sense of validation when she was diagnosed. "Learning I had fibromyalgia made me feel that I had something legitimate, that now I would take care of myself differently," she says. "It put a big punctuation mark at the end of my quest." Pushing for the Best Care One morning before her diagnosis, Wolfe called her mother, weeping, feeling helpless. "You are not the first person who has had to figure out what is wrong with you," said her mother. "Don't give up. You keep going." Wolfe realized her mother was right: She was the only person who could and would persist in solving her medical mystery. "You have to insist on the help you need," Wolfe advises anyone whose condition has not been diagnosed and treated. "If one doctor can't help you, move on." But don't arrive at the doctor's office empty handed. The better educated you are about fibromyalgia, the more able you are to educate your physician – and to evaluate his care. "The best way you can help a doctor is to give him information in a gentle manner," says Dr. Yunus. "Don't be combative, but let him know in a concrete way that this is not all in your head." Dr. Yunus suggests that patients find articles published by leaders in fibromyalgia research such as Robert Bennett, MD, Don Goldenberg, MD, and Daniel J. Clauw, MD. "Doctors are less likely to take Internet information seriously," he says. Schaefer agrees. "Even though this places an additional stress on you, you need to pull data together and inform your physicians and keep informing them," she says. "Keep a record of your experiences and show it to them." Another source of information and comfort is support groups. "You learn that you are not alone," says Schaefer. She also notes that group members can share information about treatments as well as impressions of various health providers, a good way to find sympathetic doctors. Many support groups also have a professional – a nurse, social worker, psychologist or physician – who serves as a consultant or frequent speaker. "That's a critical piece of successful support groups," says Schaefer. (For information about local support groups, contact your local Arthritis Foundation chapter, or local churches and hospitals, which often sponsor such groups.) Schaefer also recommends that those with fibromyalgia keep a journal recording their ups and downs. "You can reread the journal and perhaps rethink things and go on to see them in a different perspective," she says. And it helps identify what you are truly feeling. The other essential is optimism, says Dr. Yunus. "Think, 'This is not a disease that will cripple me or kill me. It is real, but I can do something about it.' A can-do attitude is the most important thing."