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The Outsiders: Yes, the Pain & Fatigue of Fibromyalgia are Real. Now, What About the Diagnosis?

By Dorothy Foltz-Gray

Source: www.arthritis.org (the Arthritis Foundation)

Hearing that your debilitating pain and fatigue are neither real nor believable seems both unreal and unbelievable. Sounds crazy, yet it’s an all-too-familiar situation for people with fibromyalgia.

At 43, Cathy Wolfe was a go-getter. A marketing director for a medical equipment company in Irvine, Calif., she’d remarried two years earlier, and now she and her husband were raising four teenagers – her children and his. Life was full, stressful, joyous, exhausting. Wolfe felt splendid. And then she felt a kink in her back.

For most people, a back kink is hardly a signal that life is taking a turn. Wolfe, energetic as always, headed straight for a chiropractor. “He adjusted my back and it went into spasms that never stopped,” says Wolfe, now 46. Suddenly Wolfe had pain so unbearable that she couldn’t sit down. The pain lessened only if she lay perfectly still. “I would go into work and stand all day,” she says. “I needed my job.”

The pain launched Wolfe on an odyssey from doctor to doctor. She went to an orthopedist who put her on medications that hurt her stomach. She tried a less aggressive chiropractor. She circled back to two more orthopedic surgeons who took X-rays and MRIs (magnetic resonance images) and referred her to an acupuncturist. Worst of all, a pain specialist she consulted implied that it was her head that needed examining, not her back.

“He talked about people needing attention and not wanting to get better,” she says. “He suggested that I ask myself why this was happening to me. I was so angry. I didn’t know how to explain that I didn’t need this kind of attention.”

No one could help or even guess what was happening to her. Finally, after four months of spinning through the medical system, she took a leave from work. Her new job: a hunt for a diagnosis.

After six months, an endocrinologist diagnosed Wolfe with fibromyalgia. Sadly, her prolonged quest for answers is not an isolated one. Americans with fibromyalgia see an average of four doctors before they receive a diagnosis. While fibromyalgia isn’t the only condition difficult to diagnose – the same kinds of stories apply to those with autoimmune forms of arthritis, chronic fatigue syndrome, Lyme disease and lupus – it is one of the few that burdens the patient beyond the distress of physical symptoms with medical uncertainty, doctors’ judgments and varying opinions and, yes, sometimes stigma.

For Wolfe, for anyone who journeys from doctor to doctor, the time between symptoms and getting a diagnosis, and the implication that symptoms are all in your head are often as unbearable as the condition itself. And the uncertainty with which doctors sometimes do diagnose fibromyalgia can make the long-sought-after explanation seem shaky at best.

And the exasperation doesn’t end with a diagnosis – only a couple of pharmaceutical companies are developing drugs specifically for fibromyalgia and none have been approved specifically for the condition yet. Such obstacles further complicate both the physical condition and psychological well-being of these patients and muddy the relationships they have with their doctors. Most important, doubt, disbelief and debate stand between these patients and quality care and, perhaps, peace of mind. Yet addressing such issues isn’t simple – in part because their origins aren’t either

Fibro’s Elusive Diagnosis

Fibromyalgia is hard to pinpoint in part because the criteria defining it are fairly new – the medical establishment didn’t endorse those criteria until 1990 – and many doctors haven’t been trained to recognize them. The four criteria – widespread pain of three months duration, pain in all four quadrants of the body; pain in 11 of 18 specific tender points; and pain defined as discomfort when 8 pounds of pressure are applied to the tender point – do not have to be present at the same time in order for someone to have fibromyalgia, making diagnosis even more elusive.

First noted in 19th-century medical literature as “spinal irritation,” “Charcot’s hysteria,” or “morbid affection,” by the 1970s, doctors considered the condition to be “fibrositis” – a psychological phenomenon with physical symptoms that range from pain, fatigue, depression and sleep problems to headaches, irritable bowel syndrome and skin color changes.

Fibromyalgia, as it’s been called since 1990, is considered a cluster of symptoms, or a syndrome, because it lacks the clear markers of disease such as measurable changes on blood tests or X-rays. But, in fact, neuro-imaging – rarely done except for research purposes – does reveal physiological differences in the way those with fibromyalgia perceive pain, says Andre Barkhuizen, MD, assistant professor of medicine in rheumatology at Oregon Health and Science University in Portland.

The fact is, however, that fibromyalgia can be tough to identify because its calling card doesn’t pop up in a blood test or X-ray. “There’s no pathology that you can see in a microscope,” explains rheumatologist Muhammad B. Yunus, MD, professor of medicine at the University of Illinois College of Medicine in Peoria.

Further, as Wolfe’s case shows, not all fibromyalgia looks the same. Diagnosis is a process of exclusion in which test after test rules out other diseases and conditions. Most patients experience widespread pain and specific tender points, fatigue and poor sleep.

But in Wolfe’s case, she felt only back pain – or rather, that’s the major pain she focused on. Other aches and pains she’d had for years she’d dismissed as a by-product of an active life, a common story.

Philosophy’s Polarizing Role

But the difficulty with fibromyalgia diagnosis isn’t simply one of recognition. It’s also one of philosophy. Some doctors don’t find the diagnosis of fibromyalgia helpful or valid. One such doctor is rheumatologist Frederick Wolfe, MD, director of the Arthritis Research Center Foundation in Wichita, Kan.

Although Dr. Wolfe (no relation to Cathy Wolfe), a trailblazer, was instrumental in defining the cluster of symptoms known as fibromyalgia, he now feels that a diagnosis of fibromyalgia, in a sense, condemns patients to seeing themselves as ill, or perhaps debilitated for the rest of their lives. “A diagnosis doesn’t help at all,” says Dr. Wolfe. “Symptoms of fibromyalgia exist to varying degrees throughout the population. We’re simply identifying people at one extreme and saying they have an illness.”

Whether fibromyalgia is simply the extreme form of a normal, healthy state of being is certainly key in the medical debate. “Some doctors are saying, ‘I can’t buy into this concept that takes symptoms, which in many people are stress-related, and makes them into a disease,'” says Dr. Wolfe. “It isn’t that these people don’t hurt or have fatigue. It’s whether we say, ‘You have sufficient symptoms to be diseased,’ or whether we say, ‘Let’s try to get you over this and get you better.’ Physicians each approach it differently.”

Even doctors whose views differ from Dr. Wolfe’s worry that patients may see the diagnosis of fibromyalgia as a reason for limitation and disability, a label of who they are and will be for the rest of their lives. “A diagnosis is a two-edged sword,” says Robert Spiera, MD, director of rheumatology at Beth Israel Medical Center in New York City. “If someone seems to have fibromyalgia, it’s helpful to know partly so you understand what you don’t have. But it’s also important to communicate that having a diagnosis is no reason to go into a hole. Fibromyalgia should be a background issue. People who have fibromyalgia can get better and lead productive lives.”

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 diagnosed 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.”

About the author: Dorothy Foltz-Gray is a contributing editor to Arthritis Today. Her work has appeared in Health, Real Simple, Cooking Light, Good Housekeeping, Reader’s Digest and O. She is the author of The Arthritis Foundation’s Guide to Good Living With Fibromyalgia.

© 2003 The Arthritis Foundation.