Fibromyalgia: The Misunderstood Disease

“I was told they didn’t know what was wrong with me; the blood tests came back good, x-rays came back clear,” she says. “They had no idea and they’d shuffle me to another doctor, another specialist.” She saw rheumatologists, neurologists, internists, and blood specialists, but there was still no answer.

After more than a year, she was finally diagnosed with fibromyalgia, a chronic and debilitating condition that causes severe pain throughout the body. Ongoing research at the University of Michigan is demonstrating that fibromyalgia may affect millions of Americans, and research using sophisticated imaging techniques is helping the medical community better understand this disease.

“Fibromyalgia is a condition that’s characterized by widespread pain involving the muscles, the joints, and in fact, any area of the body,” explains Daniel Clauw, M.D., director of the U-M Chronic Pain and Fatigue Research Center. “In addition to pain, individuals with fibromyalgia often experience sleep fatigue, difficulties with sleep, and difficulties with memory and concentration, among other symptoms.”

Josephine’s symptoms included extreme fatigue, recurring headaches, chest pains, stomach and intestinal problems, muscle fatigue and weakness, restricted mobility, and anxiety. At her worst point, Josephine was bed-ridden and medicated to the point that she wasn’t functioning due to the pain.

However, there is hope. “Fibromyalgia is gaining respect in both the scientific and the lay community because of all the research that’s been conducted – first, showing that it’s a real disease, and second, showing that there are drugs that specifically work to treat fibromyalgia,” Clauw says. “Our group and others at the University of Michigan have been very involved in looking at the underlying mechanisms of fibromyalgia.”

Clauw and his colleagues use a technique called functional imaging, which allows scientists to look at how different areas of the brain function when people are given painful stimuli. What they have found is that for the same amount of damage or inflammation in the peripheral tissues, a fibromyalgia patient would

feel significantly more pain than the average person. Patients with fibromyalgia can also experience pain throughout their entire body even without any damage or inflammation of the peripheral tissues.

“We think that one of the primary abnormalities in fibromyalgia is an imbalance between the levels of neurotransmitters in the brain that affect pain sensitivity,” Clauw says. With this knowledge, new treatments are being developed to combat the condition’s symptoms. “Although right now there are no drugs approved to treat fibromyalgia, within three years it its likely that there will be three, if not four, drugs specifically approved to treat the condition,” he says.

These drugs fall into two general classes. One class raises the levels of neurotransmitters that normally stop the spread of pain, while another class lowers the levels of neurotransmitters that normally increase the spread of pain.

The American College of Rheumatology estimates that about 3 percent of Americans suffer from fibromyalgia, but Clauw notes that this may not accurately reflect the number of people with this condition. “It’s widely agreed that their definition is very restrictive. In fact, it’s probably more like 5 or 6 percent of Americans,” he says.

There are other misunderstandings about fibromyalgia. Some physicians believe that its symptoms are all psychological. “The doctors say, ‘Well it’s all in your head, you just need to get some extra rest and you’ll be fine, toughen up,’” Josephine remembers. Another misconception about the disease is that it is caused by inflammation in the muscles. Doctors now know that neither of these theories is true. “This is not an inflammatory disorder and this is not a primary psychological condition,” Clauw clarifies. “Pain is always a subjective matter, but everything that we can measure about the pain in fibromyalgia shows that it is real.”

Unfortunately, patients are often misdiagnosed as having disorders such as rheumatoid arthritis, chronic fatigue syndrome, or irritable bowel syndrome. Fibromyalgia has no definitive diagnosis, so doctors must rely on a patient’s medical history and symptoms when diagnosing the illness, excluding conditions that might cause similar amounts of widespread pain.

The condition’s cause is still unknown, although it is probably a combination of genetics and environment. “A person is about eight times more likely to develop fibromyalgia if one of their relatives has it,” says Clauw. “But there are also certain environmental triggers. For example, people develop fibromyalgia after motor vehicle accidents, or after certain types of infections or biological stress,” he continues. Although the disease is more common in women, there are no real demographic factors that can predict its development.

Clauw recommends that anyone who experiences pain or fatigue that is severe enough to inhibit day to day functioning seek medical attention, even if the symptoms have only lasted a couple of days. “It’s better to get medical attention and appropriate treatment early for this condition,” he says.

As for Josephine, maintaining a positive attitude and acknowledging and accepting the disease has helped her live a more normal life. “I know that I will always have this disease, but now I see myself as a survivor,” she says.

* Not her real name