By Ginevra Liptan, MD
Fibromyalgia is much more common in men than previously thought. Historically it has been considered a disease that mostly affects women, with men thought to represent only about 10 percent of fibromyalgia cases. However, newer studies suggest it may be three times higher than that, with males making up at least 30 percent of all fibromyalgia sufferers.
One high profile patient is actor Morgan Freeman, who has said, "I only get one life, and I will not let fibromyalgia take the joy from living it."
Based on what I see in my fibromyalgia clinic, I think this higher percentage likely is true. Which begs the question: Why have we vastly underestimated how many men have fibromyalgia? It turns out the way we have been diagnosing it since 1990—a tender point exam—is not as accurate in men. To be diagnosed with fibromyalgia from a tender point exam requires tenderness in at least 11 of 18 specific muscle areas. But this test was developed from studying women! Newer research shows that the men with fibromyalgia tend to have less tender points than women, and require much more pressure to elicit a pain response. This means the tender point exam is often going to miss the diagnosis in a man.
In 2010, a new way to diagnose fibromyalgia was developed that eliminated the tender point exam completely and was instead based on symptoms. These symptoms include widespread pain, fatigue, waking unrefreshed from sleep, and brain fog. Hopefully these newer criteria will give us better tools to diagnose fibromyalgia in all genders.
In addition to these missed diagnoses, there are other areas where medicine has fallen short for men with fibromyalgia. Most fibromyalgia research studies have excluded male subjects (so there is more uniformity among studies)—there may be treatments that work better or differently in males, but we just don’t know.
But in light of these newer studies that men might represent a full one third of all fibromyalgia patients, it is time to change our thinking. The stigma associated with having fibromyalgia is real—that is why I half-jokingly call it the F-word of medicine. But for men with fibromyalgia that feel they have a “women’s” disease, this only adds to their suffering.
Let me tell you about one of my patients, a quiet, thoughtful man in his late forties that I will call Kevin. He spent much of his adulthood in the military and was deployed several times. Around age 30 he began dealing with persistent fatigue, muscle pain, and depression, and was ultimately diagnosed with fibromyalgia. His wife is frustrated he can’t work or do more around the house and struggles to accept his illness. It is an ongoing battle for him to have his illness included in his Veterans Affairs Health Benefits. He and I repeatedly have had to argue with them that he does indeed meet a diagnosis of fibromyalgia and that it was likely triggered by his combat experiences. In fact, fibromyalgia is very common in combat veterans. In one study almost half of the male patients with combat-related PTSD also had fibromyalgia.
Along with being aware of the diagnostic difficulties, as a provider caring for male fibromyalgia patients there are a few other key factors to keep in mind. Nearly half of male patients with fibromyalgia also have obstructive sleep apnea, a common sleep disorder caused when the soft tissue in the back of the throat collapses and blocks the airway, stopping your breathing. Because this is so common in men with fibromyalgia symptoms, I refer nearly every male patient for a sleep study to look for it.
It is also useful to check a man’s testosterone level, particularly if he is taking high daily doses of opiate pain medications. For men with fibromyalgia, low testosterone levels will exacerbate their symptoms, and unfortunately long-term use of high doses of opiate-based pain medications can suppress testosterone production.
One study found that 74 percent of men on high-dose opioids had low levels of the hormone. And if testosterone is low, it is worth considering hormone replacement as it can really improve symptoms of fatigue and muscle weakness that are worsened by low testosterone.
One last point: We need to get away from thinking of fibromyalgia as a women's disease, as that only compounds the problem. And as further medications and treatments are being tested, it is time to start including men in the trials.