Mark Maginn had excruciating pain all over his back, hips, and neck for 15 years before a doctor finally gave his problem a namefibromyalgia. "I was fully prepared to live my life in excruciating pain," says Maginn, 61, a former psychotherapist living in San Francisco. "I was relieved that there was a diagnosis, but it's more than a little disconcerting [when] you realize you've got this thing that's going to be with you forever."
Fibromyalgia can take years to diagnosethree to five years on averagebut Maginn's situation may have been complicated by that fact that he's a man. Fibromyalgia is diagnosed in 2% to 4% of the population but is about nine times more common in women than men.
The lower numbers mean that doctors are less likely to consider the diagnosis in the first place, and, what's more, fibromyalgia may look slightly different in men than women. The condition may be milder in men, who may also have fewer symptoms. Some research has suggested that men tend to have less frequent flare-ups of their symptoms, which also are likely to last for shorter periods of time.
However, one Israeli study found that men with fibromyalgia actually had more severe symptoms, decreased physical function, and lower quality of life than women the same age with fibromyalgia.
Maginn, a volunteer advocate for the American Pain Foundation, has been able to tame about 60% to 70% of his symptoms with the help of the drug Lyrica, although he says he still has "days when [that pain] is so lousy that even the drug doesn't have any effect on it."
Part of the reason men are less likely to be diagnosed may be due to deeply ingrained social norms that teach men to hide their feelings, making them less likely to seek help for something that could be viewed as a weakness, like body pain.
"Doctors need to question their male patients about pain to get their patients to talk, [because we] are sometimes reluctant to talk about it," says Maginn.
Unfortunately, fibromyalgia still has a serious credibility problem. Even if men are willing to talk, not all doctors believe what they are hearing. "When people can't see what the trouble is, they have a tendency not to believe in the trouble," says Maginn. "Pain is invisible."
Doctors both before and after Maginn's diagnosis doubted his fibromyalgia was real, he says. "I had one doctor suggest that I see a psychotherapist or psychiatrist because the pain was probably all in my head. That infuriated me."
He's certainly not alone. In a 2007 survey, more than 25% of the 2,000 fibromyalgia patients questioned reported that their doctors did not view fibromyalgia as a "very legitimate" disorder. For Maginn, this process grew frustrating, as he continued to meet with doctors who didn't believe him enough to look for answers. "It didn't prevent me from seeking out help, but it made the search for help more fraught with difficulty," he says. "If I had been somebody [else], I could see where I would have just given up trying to work with doctors."
Maginn says he wasn't reluctant to talk to his doctor about his symptoms, but isn't immune to all the stigma surrounding fibromyalgia in men. He is not able to stand for long periods of time and was forced to leave work on disability, which made him vulnerable.
"I'm sensitive to not being the breadwinner, a traditional male role," he says. "Since I'm not and my wife is, I'm sensitive to people looking at me and wondering what's wrong because they can't see anything."
Fortunately for patients, the U.S. Food and Drug Administration's approval of three drugsCymbalta, Lyrica, and Savellafor fibromyalgia has helped to bring the condition out of the closet, says Patrick Wood, MD, a member of the medical advisory board of the National Fibromyalgia Association. "With the release of recent medications, there's been a greater orientation to the reality of this disorder and emphasis to make it something that's treated as a legitimate condition."
But in addition to disbelief and social norms, there are also some physical variations that make fibromyalgia different in men. The current guidelines for diagnosing fibromyalgia include feeling pain at 11 or more of 18 common tender points. But because the average woman is more sensitive to pain than the average man, women score higher on this diagnostic test and, therefore, meet the criteria for fibromyalgia more frequently than men, explains Daniel Clauw, MD, the director of the Chronic Pain and Fatigue Research Center at the University of Michigan, in Ann Arbor.
Dr. Clauw supports the burgeoning movement to eliminate the tender points test from fibromyalgia diagnoses because of this bias toward women. "Using [tender points] criteria, fibromyalgia is about 95% female," he says. "That will probably go down to about 65% because chronic, widespread pain is only about 1.5 times greater in women than in men."
Another deviation may be chemical imbalances in the brain. Dr. Wood suggests hormones may play a role. "With the dopamine system, in particular, there are gender differences as to how the brain responds to situations," he says, pointing particularly to stress. "Estrogen is very excitatory to the central nervous system, [while] progesterone is very calming." Greater attention to hormonal imbalances may lead to gender-specific treatment in the future, he adds.
Dr. Clauw is not convinced that estrogen is the culprit. "Pregnancy and menopause [cause great changes in estrogen] and neither of those are associated with changes in pain in women," he says. "We simply don't know why women have more pain than men." Until the condition is more deeply understood, managing the pain is any patient's best plan of attack.
Part of that plan may be turning to fellow patients. Support groups can be helpful, although Maginn says being the only man led to an unsatisfying experience. Looking for a better option, he and his wife scoured stores for self-help books but found little. To fill the void, he's busy writing the first draft of a memoir about his experiences with fibromyalgia and other illnesses; he hopes it will help men like him.
(Today, greater options exist for men, particularly online. There's the Yahoo-based FibroMenSupportGroup with nearly 400 members, and plenty of sites offer information and chat forums, like MenWithFibro.com.)
Despite the gender imbalance, advice for thriving with fibromyalgia is gender neutral. Both men and women can benefit from scaling back on activities, allowing themselves to do less, attending support group meetings, and taking medications or adopting lifestyle changes that ease the pain.
"Menand womendeserve to have their pain treated," says Maginn. "There is hope for us."