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."
Fibromyalgia Rarer Among Men
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.
How Fibromyalgia Affects Men
Chronic pain may be its chief symptom, but fibromyalgia sometimes comes with additional complications. Chronic fatigue and difficulty sleeping are common complaints, as are headaches, irritable bowel syndrome, and restless legs syndrome. Memory problems and difficulty concentrating often come with the territory as well.
In general, Yunus says, men have fewer symptoms than women. They tend to have less from fatigue and they have pain in fewer places. "It's much less common for men to hurt all over," Yunus says. "But in many ways, men are more affected, more bothered by fibromyalgia."
The reason for that may be more sociological than biological.
"Men don't come to the doctor nearly as much as women," says Michael J. Pellegrino, MD, a fibromyalgia expert at Ohio Pain and Rehab Specialists and an expert on WebMD's Fibromyalgia Exchange. "Why? Gender stereotypes."
"Men tell themselves, ‘I'm not supposed to go to the doctor, I'm not supposed to complain.' So a lot of the men I see, their wives make them come," says Pellegrino, who estimates that up to 20% of men with the disorder are undiagnosed.
The longer men put off seeing the doctor, the more they put themselves at risk of developing complications that can affect their work, their hobbies, their relationships. Pellegrino, who has fibromyalgia himself, says that depression is not uncommon among men who have delayed getting a diagnosis.
"Men [with fibromyalgia] often feel broken, even suicidal," says Gavin Levy, an Austin, Texas-based writer who was diagnosed with fibromyalgia four years ago, at age 33. "We've all been there. It feels like your masculinity has been taken away to a degree. You are a provider and protector, then suddenly that role is reversed."
The most important thing a man with fibromyalgia can do, Pellegrino emphasizes, is to get diagnosed. The sooner that happens, the sooner he can start treatment.
Living With Fibromyalgia
"There is a clear relationship between overweight and pain and fatigue. Overweight is a risk factor for fibromyalgia," Yunus says. A recent study linked obesity and a greater chance of having fibromyalgia. That does not mean that everyone with fibromyalgia is overweight, or that extra pounds, by themselves, cause fibromyalgia.
Wold hits the treadmill for at least 10 to 15 minutes a day. He also does some light weightlifting to keep his strength up and his own weight down. He even gets out on the golf course once in a while, knowing that it will wear him out.
"When I'm done, it makes me feel better," he says. "It reminds me that a little of my old life is still there."