CHAPTER ONE
 
An Introduction to Fibromyalgia
“I wish I didn’t feel so exhausted and in pain all the time.”
“It’s a struggle to even get out of bed in the morning. I have kids to take care of, but I can’t even get it together to make breakfast half the time.”
“I used to have a great job, and then I had to quit because the fatigue and the lack of concentration made it impossible for me to keep working.”
“I don’t know which is worse, the fatigue or the depression or the pain. All I know is, I’m sick and tired of feeling sick and tired.”
Do any of these statements describe you? If so, you may be one of the millions of people in the United States who is living with fibromyalgia. We say “millions” because it is difficult to obtain an accurate number of people who have fibromyalgia. Depending on the source, the numbers range from 6 to 12 million. According to the Mayo Clinic, for example, 2 percent of the American population has the syndrome, which places the figure at around 6 million. The National Fibromyalgia Association estimates the number to be 10 million in the United States and that this syndrome affects 3 to 6 percent of the world’s population. If you check with WebMD, a popular Web site among Internet surfers looking for health-related information, you will see the high figure of 12 million Americans.
Why is there such a large range in estimates? One reason is that fibromyalgia is difficult to diagnose; another is that it can take several years of going to doctors before an individual is finally given a diagnosis. Many cases are believed to go unreported or undocumented because some people just give up seeking a medical reason for their symptoms. Quite simply, they are sick and tired of being sick and tired, and that no one can seem to tell them why.
Then there is the controversy among some physicians: does fibromyalgia really exist? It would be hard to convince the millions of people who have it that it does not, and indeed there is plenty of evidence that it does exist. However, a few physicians still shake their heads whenever the topic comes up. On January 14, 2008, The New York Times had a front-page story entitled “Drug approved. Is disease real?” with the subtitle, “Some doctors dispute existence of pain.” The drug referred to was pregabalin (Lyrica), the first prescription medication approved by the Food and Drug Administration (FDA) for treatment of fibromyalgia—the “nonexistent” disease. (Actually, fibromyalgia is a syndrome and not a disease, but we explain that below.)
Although fibromyalgia is admittedly a challenge to diagnose and to treat, it is also a challenge to live with. We want to assist you in taking on these challenges and help you manage your “relationship” with this syndrome and with yourself.
So do not worry about the numbers: the number you should be concerned with is one, whether it is you or a loved one who has fibromyalgia or who is displaying symptoms. Regardless of how many millions of people are affected by fibromyalgia, the important thing for you to do is to gather all the information you can and seek help. And there’s no better time to begin than right now.
WHAT IS FIBROMYALGIA?
The word “fibromyalgia” comes from “fibro,” referring to fibrous tissue such as ligaments and tendons; “my” which refers to muscles; and “algia,” which means pain. Fibromyalgia is a common, chronic pain disorder that impacts an individual on every level: physical, mental, emotional, social, and spiritual. Along with the persistent pain, individuals with fibromyalgia experience fatigue that can often be overwhelming, and a multitude of other physical and psychological symptoms that can affect all the organ systems in the body.
Fibromyalgia is a syndrome, not a disease. A disease is defined as a medical condition for which there is a particular cause or causes and signs and symptoms that can be recognized. This differs from a syndrome, which is a collection of signs, symptoms, and medical problems that occur together but are not related to one specific, identifiable cause.
Fibromyalgia is generally accepted as a type of arthritis, but unlike most forms of arthritis, fibromyalgia primarily affects the muscles rather than the joints. Although fibromyalgia is a chronic condition, there are a few promising facts we can say about it. One, it is not a fatal condition, and the pain generally does not worsen over time. Two, remission can occur when individuals participate in therapy and healthful lifestyle choices.
Among all the challenges that fibromyalgia patients face, there is also the frustration factor. Few people understand the condition, and it can be very difficult for family members and friends to relate to what an individual with fibromyalgia experiences every day of her or his life. If you are a mother who has fibromyalgia, you may hear “Why is mommy so tired all the time?” Your symptoms may have caused you to quit your job, stop seeing friends or entertaining, and cancel travel plans. Sexual intimacy may seem impossible. You may be too tired or depressed or uncomfortable to care much about anything except wanting to feel better.
The second part of this book goes into detail about how you can manage your symptoms and deal with the emotional and social challenges of this syndrome. For now, let’s take a closer look at the syndrome itself.
WHO GETS FIBROMYALGIA?
Fibromyalgia is typically thought of as a woman’s disease. Indeed, research indicates that 70 to 90 percent of those affected by the syndrome are females, and that the diagnosis is usually made between the childbearing ages of 20 and 50. However, according to the American College of Rheumatology’s classification of fibromyalgia, about 8 percent of adults have the syndrome by age 80. Fibromyalgia is often seen in families, among siblings or mothers and their children. Men are also affected by the syndrome, as are children.
Men and Fibromyalgia
“How did I get a woman’s disease?” That is a common question among the men who are diagnosed with fibromyalgia. In fact, men often have a difficult time getting diagnosed properly—more so than women do. As a result, it is believed many men with fibromyalgia are undiagnosed and so their cases are unreported. This has led some experts to suggest that the number of men suffering from the syndrome could be closer to 30 percent of all sufferers.
Men and women may not experience fibromyalgia in the same way. Symptoms in men tend to be milder, and men also reportedly experience fewer of the common symptoms, including fatigue, morning stiffness, and irritable bowel syndrome. At least one study, however, reported that symptoms in men were actually more severe than those experienced by women.
It is difficult to get a clear picture of how fibromyalgia affects men for several reasons: the condition is largely viewed as a woman’s disease and so some doctors do not believe that men can get the syndrome; men are often reluctant to admit to severe pain or discomfort and so don’t seek help; and men generally are expected to bear pain quietly and so do not seek active treatment for fibromyalgia even if they do get...