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 diagnosed.
Fibromyalgia in Children
It is estimated that one in six people who suffers with fibromyalgia is younger than 18. The encouraging news about childhood fibromyalgia is that children who develop the syndrome tend to have a better diagnosis than adults. Several studies report that more than 50 percent of children with fibromyalgia recover within two to three years of experiencing symptoms.
As in adults, among children fibromyalgia affects females more than males, and diagnosis is a challenge because the symptoms are often mistaken for those of other disorders and diseases. Fibromyalgia can have a major impact on a child's health and quality of life, because the symptoms can make it difficult for him or her to attend school, play with friends, and participate in routine childhood activities. Children who have a parent with fibromyalgia are more likely to develop the condition, as fibromyalgia has a genetic component. (In Chapter 10, see "Raising a Child Who Has Fibromyalgia.")
WHAT CAUSES FIBROMYALGIA?
This is a question that researchers would love to answer with confidence, but so far all they have are theories. For one thing, thus far no tests or physical examinations have indicated any major cause of the syndrome. For another, it affects a wide range of people: young, middle-aged, seniors, children, women, and men. Finding a clue to the cause of fibromyalgia among this immense population is a monumental task, but it is one that scientists are aggressively pursuing.
The Misfire Theory
The theory that has drawn a great deal of attention is that the brain's autonomic nervous system, which controls various bodily processes such as digestion, metabolism, and reaction to stress, misfires. Many researchers are focusing on the idea that problems with the neurotransmitters (chemicals in the brain that allow nerve cells to communicate with each other) and hormones used by the autonomic nervous system can cause certain bodily functions to malfunction, resulting in fibromyalgia symptoms.
For example, investigators have found elevated levels of a neurotransmitter called substance P in the spinal cord of patients with fibromyalgia. Substance P works as a pain messenger, and high levels of this neurotransmitter can cause pain messages to be sent to the brain even when there is no injury or illness that might cause pain.
Another neurotransmitter called serotonin exists in very low levels in fibromyalgia patients. Low levels of this chemical may explain why fibromyalgia patients experience chronic pain. Yet another neurotransmitter, tryptophan, is associated with sleep. Do you know why many people fall asleep easily after eating turkey on Thanksgiving? Because turkey contains high amounts of tryptophan, a chemical that promotes sleep. In people who have fibromyalgia, levels of this neurotransmitter are deficient, and this may explain why so many people with the syndrome have sleep difficulties.
The fact that fibromyalgia primarily strikes women most often suggests that hormones play a role in the syndrome. Symptoms of fibromyalgia tend to be more severe in women who have gone through menopause, and the syndrome often begins between the middle to late forties in women, which is around the time estrogen levels begin to decline and menopause is on the horizon. Coincidence? Researchers are exploring this possible cause as well.
Excess Phosphate Theory
An endocrinologist and assistant clinical professor at the University of California, Dr. R. Paul St. Amand, was one of the first scientists to suggest that excess phosphate is the cause of fibromyalgia. In fact, Dr. St. Amand developed an entire treatment regimen based on this theory, in which he uses low doses of a drug called guaifenesin to alleviate fibromyalgia pain and muscle tension. We discuss this treatment approach in Chapter 5.
DID YOU KNOW?
Scientists have been able to "see" fibromyalgia using single photon emission computed tomography (SPECT). In a study of 20 women diagnosed with fibromyalgia and 10 healthy women as a control group, researchers used SPECT and confirmed that the women with the syndrome showed brain perfusion (the amount of blood flowing through the brain) abnormalities in comparison with healthy volunteers. These abnormalities were directly correlated to the severity of the syndrome, and the perfusion abnormalities were discovered in the area of the brain known to discriminate pain intensity. In addition, a decrease in perfusion was seen in areas thought to be involved in emotional responses to pain.
Other Theories
Another theory involves the role of sleep. The majority of people with fibromyalgia have difficulty sleeping, and some experts suggest that rather than sleep problems being a symptom, perhaps they are a cause. The suggestion is that because fibromyalgia patients cannot get enough sleep, the body is not able to repair its injured muscles and nerves, resulting in serious pain.
The trauma theory is another idea. Many people with fibromyalgia have suffered serious injury or muscle trauma, often from an automobile accident, before the onset of their symptoms. Injury to the central nervous system can have an impact on how the brain functions and increase a person's sensitivity to pain, disturb their sleep patterns, and disrupt their cognitive thought processes. Thus, some scientists believe in the trauma/injury theory to explain fibromyalgia.
Infections that attack the central nervous system and inhibit the production of neurotransmitters is another possible cause. It is also possible for infections to cause damage to muscles, which can develop into chronic and widespread pain. Some experts suggest that fibromyalgia is the result of an overactive immune system: because it works so hard to protect the body against invading agents, severe inflammation and pain develop.
RISK FACTORS
There is often a fine line between a risk factor and a cause of a condition, and this is also true for fibromyalgia. However, we have separated out what are generally regarded as risk factors.
DID YOU KNOW?
In October 2009, preliminary research linked chronic fatigue syndrome to a retrovirus called XMRV, and according to unpublished data, possibly fibromyalgia as well. Scientists at Whittemore Peterson Institute discovered a retrovirus in the majority of chronic fatigue patients. When they tested some blood samples from people with fibromyalgia, they found a high prevalence in those samples as well. However, very little additional information is available at this time, and further research is needed to determine if there is a link between the retrovirus and fibromyalgia.
o Age. Fibromyalgia tends to develop during early and middle adulthood, but as we have already noted, it can also occur in children and in older adults.
o Sex. Females are more likely to develop fibromyalgia than males.
o Genetics/family history. You are more likely to develop fibromyalgia if you have a relative who also has the syndrome. One study found that 28 percent of the children of mothers with fibromyalgia also developed the syndrome. Another study reported that 66 percent of parents of children with fibromyalgia had some kind of chronic pain, and about 10 percent had fibromyalgia.
o Overweight/obesity. New research published in the May 2010 issue of Arthritis Care & Research reports that overweight and obese women, especially those who get one hour or less of exercise per week, are at higher risk for developing fibromyalgia.
o Rheumatic disease. People who have a rheumatic disease, such as rheumatoid arthritis, lupus, or ankylosing spondylitis may be more likely to develop fibromyalgia.
THE BOTTOM LINE
Fibromyalgia is a complex syndrome, and its causes are complex as well. Knowing what causes this syndrome would certainly help healthcare professionals develop more effective and sophisticated treatment plans. Until then, there are many options you can explore, as we discuss in the chapters that follow.
Copyright © 2011 by Lynn Sonberg Book Associates
