A Tough Diagnosis
Now that you know the guidelines for diagnosing fibromyalgia, you may be wondering why it's so hard to figure out whether someone has this perplexing condition. After all, no one would complain about widespread pain if they didn't have it, and tender points are so specific that it seems it should be easy to determine if someone has FMS. But in reality, there are several reasons why fibromyalgia is hard to diagnose.
The primary signs and symptoms of fibromyalgia are fairly specific, but the symptoms may crop up at varying times. It's quite possible for you to feel pain at numerous tender points at one doctor's visit and then experience relief at a follow-up appointment a month later. That's because the disease itself is characterized by periods of flareups and remission. In other words, the telltale signs and symptoms don't have to occur at the same time for you to have fibromyalgia.
People who have fibromyalgia look healthy. In fact, you may appear to be completely well, even when you're in the throes of mind-numbing pain. Fibromyalgia causes no outward deformities or changes in the joints and muscles, and people with fibro do not look sickly. About the only outward sign of poor health might be dark circles under your eyes, caused by the lack of sleep.
Even the nineteenth-century inventor and industrialist Alfred Bernhard Nobel had a hard time convincing people he was ill. But a 1996 review of his letters to his mistress showed that Nobel — the inventor of dynamite and creator of the prestigious prize for intellectual achievement — probably had fibromyalgia. He complained of sleep disorders, unrelenting pain, and paralyzing fatigue. His family thought he was a hypochondriac, and his letters suggest he could not find relief despite visits to elegant European spas.
While no one complains about looking good, some patients might consider their healthy appearance a source of frustration. Even close friends and family members may find it difficult to believe that you're sick. It's not uncommon to hear well-meaning friends say, “But you look great.” In fact, it's not uncommon for family, friends, bosses, and even some physicians to accuse fibromyalgia patients of faking their pain.
Sadly enough, there are those who do in fact fake fibromyalgia. Some people looking for drugs, sympathy, disability, and workman's compensation have unscrupulously pretended to have fibromyalgia. Unfortunately, since there is no test that can prove they
When it comes to fibromyalgia, no two patients are alike. Some may have only lower back pain and occasional bouts of insomnia. Others may be in such extreme pain that they are wheelchair-bound. Some people experience tender points in places other than the eighteen identified by the ACR. The fact that patients differ so widely in their symptoms only causes more confusion and makes it hard for doctors to determine whether someone has fibro.
Too Many Imitators
As you've already read in Chapter 3, fibro has many imitators. These fibro imitators can make it hard for doctors to figure out which condition you have and even whether you have more than one. Usually, physicians do rigorous testing to rule out other conditions before making a diagnosis of fibromyalgia. But even if you test positive for something else, it doesn't mean you don't have FMS. Fibromyalgia is not a diagnosis of exclusion.
With so many imitators, patients can spend as many as five years trying to track down a diagnosis. Others may spend years mistakenly believing they have something else. Consider the case of Nan.
For twenty years, Nan's doctors told her that she had rheumatoid arthritis. The diagnosis frightened her. She thought for sure that by the time she turned forty, her body would be wracked by deformities and that she'd be living in a wheelchair. But when doctors examined her after a car accident, Nan was told she had fibromyalgia. Nan found the news to be a great relief and now looks back on the car accident as a blessing. She has since been able to relieve her pain with yoga, tai chi, and meditation.
It's easy to attribute the symptoms of fibromyalgia to lifestyle factors. Chronic fatigue may simply be the product of too many late nights at the office. Your aches and pain might be the result of advancing age. Poor sleep and fatigue are likely byproducts of demanding responsibilities. None of these assumptions is unrealistic, and for millions of people, these symptoms really are a matter of lifestyle. But if your initial symptoms are mild, and you attribute them to lifestyle factors, you may wind up delaying a diagnosis and proper treatment.
Even with the support of prestigious medical groups such as the World Health Organization, the American Medical Association, and the ACR, too many doctors remain unconvinced that fibromyalgia is a real medical problem. They may believe the condition is the product of stressed-out patients who can't cope with the rigors of life. Or they think fibromyalgia is a psychosomatic disorder, the result of a person prone to depression, anxiety, and psychological distress.
Working with medical professionals who do not believe fibromyalgia exists is a major impediment to getting accurately diagnosed and treated. Of course, not all doctors will tell you that they don't believe in fibro. That's why it's important for you to be able to spot a nonbeliever and to then find a doctor who considers fibromyalgia a bona fide medical problem.
It's been a mere fifteen years since the diagnostic criteria for fibromyalgia were established by the ACR. That means some doctors still in practice today were never trained to spot the signs and symptoms of fibromyalgia. They also may not really understand the condition.