Randy Wold, 58, was an auto mechanic, an excellent golfer, and a bowler who never scored below 200. Then, nearly 10 years ago, when he was suffering from intense chronic pain, he received a surprise diagnosis. His doctor told him he had fibromyalgia.
A disorder that causes chronic pain and fatigue, fibromyalgia strikes mostly women. Of the estimated 5 million adults with fibromyalgia in the U.S., as few as 10% are men. For that reason, the popular perception of it as a women's disease has persisted, even among fellow patients.
"When I first went to a support group meeting, it was all women," says Wold, who is now on the board of the National Fibromyalgia Association - and the only male board member with the disease. "Some didn't want me there."
A neurologist who Wold consulted wouldn't see him, discounting his diagnosis and accusing him of angling to get disability payments.
"It's a tough deal for a man to have fibromyalgia," says Wold, who is no longer able to work and can only occasionally hit the links or the lanes. "One of my best friends doesn't believe I have it," he says. "His wife, who is a doctor, told him men can't get it, that it is in my head. That kind of hurt."
It's uncertain what causes fibromyalgia or why so few men suffer from it. Certain types of viral infections, traumas such as car accidents, and emotional stress can trigger it. In some cases, though, it strikes without warning.
Whatever the cause, there are certain biological markers that those with the disorder frequently have in common. According to Muhammad B. Yunus, MD, a professor of medicine at the University of Illinois College of Medicine, fibromyalgia is characterized by an imbalance of chemicals in the brain.
"It is a neurochemical disease," says Yunus, who points out that people with fibromyalgia show a higher than average amount of substance P, a neurotransmitter that signals pain, and a lower than average amount of serotonin, a neurotransmitter that inhibits pain.
Genetics and hormones, says Yunus, also appear to play a role, both in causing the disease and in the gender discrepancy associated with it.
"There are genes that make people more susceptible to pain, and some are related to gender," he says. "And women are more susceptible to pain because estrogen reduces the pain threshold."
That heightened sensitivity to pain may give women higher odds of getting a diagnosis of fibromyalgia.
A common test that doctors perform is to apply a fixed amount of pressure to what are called "tender points": 18 specific points on the body, designated by the American College of Rheumatology, where even a light touch can cause pain.
At least 11 of those spots must produce a significant pain response in order to merit a diagnosis. But because men have a higher threshold for pain, they often don't meet the criteria.
"Women seem literally more tender than men," Yunus says.