4. FACT: Fibromyalgia is not an autoimmune disease
That's true, even though "a lot of people with autoimmune diseases have fibromyalgia," says Roland Staud, M.D., professor of medicine at the University of Florida in Gainesville. Staud notes that researchers don't yet understand the overlap with diseases such as rheumatoid arthritis and lupus. Autoimmune diseases are conditions in which the immune system attacks the body.
5. FACT: Although fibromyalgia is more common among women, it affects men and children as well
Twice as many women as men suffer from the condition. No one knows exactly why.
"Women are more likely to develop chronic illnesses that overlap like migraines, irritable bowel syndrome and pain disorders," says Goldenberg. Researchers suspect that estrogen and other hormones may play a part, but so far no one has found clear biological reasons why women may be more susceptible. "We do know that women are more likely to complain of conditions and to go to physicians earlier than men do," he says.
Among children, it turns out, what used to be thought of as "growing pains" may in fact be undiagnosed fibromyalgia.
6. FACT: Fibromyalgia is not a psychological condition
"Depression and anxiety are about four to five times more common in people with fibromyalgia than in normal, healthy people," says Goldenberg. "But that doesn't mean that depression and anxiety are the same thing as fibromyalgia. Almost all pain disorders have links to depression and anxiety."
People with a genetic disposition to fibromyalgia likely have a predisposition to disorders such as depression as well, he adds.
7. FACT: Treatment involves antidepressants and antiseizure drugs
The notion that people with fibromyalgia have a predisposition to both pain and depression led to the idea that antidepressants might help. Antiseizure drugs are thought to improve brain neurotransmitter issues in fibromyalgia, Goldenberg says.
But opioids don't work, says Clauw: "The body's opioid system may be driving part of the underlying [development] of the disease, so giving patients opioids may make their fibromyalgia worse." In a 2013 Stanford study, when 31 women with fibromyalgia took low doses of naltrexone, a drug which blocks the body's opioids, they saw a 29 percent reduction in pain compared with an 18 percent reduction in those that took a placebo.
8. FACT: People with fibromyalgia need exercise — but not too much
"Exercise is the most effective 'drug' for fibromyalgia," Clauw says. "It works like the drugs for fibromyalgia, raising chemicals in the body that are connected to feeling good. But as with drugs, if you 'take' too much exercise, your fibromyalgia symptoms may become worse. Start at a low level of exercise and increase slowly."
Clauw's not suggesting that you sign up for sweating sessions in the gym. "Just get up and move, walk, take the stairs instead of the elevator. It will improve all your symptoms — pain, fatigue, sleeplessness — in part because it alters the levels of neurotransmitters that affect pain and mood."
Dorothy Foltz-Gray is a freelance writer.