Fibromyalgia can be especially hard on men.
“Men are expected to ‘suck it up and tough it out,’” one man noted in a survey on the ailment published earlier this month.
In fact, men may wait years, feeling increasingly worse, before they have a diagnosis.
Often men are treated for low back pain that doesn’t account for their other complaints, Daniel Clauw, a rheumatologist at the University of Michigan in Ann Arbor, told Healthline.
They end up getting “too much surgery.”
They also might end up with a prescription for opioids that make their condition worse.
Getting the right care requires risking embarrassment.
“As hard as it sometimes is for a woman to be believed, it’s typically harder for men, because many doctors, and others, still think of fibro as a woman’s disease.” writes Kevin P. White, a rheumatologist and author of “Breaking Thru the Fibro Fog: Scientific Proof Fibromyalgia Is Real.”
“Men with fibro, therefore, are often stigmatized as being wimpy, or whiney, or lazy and opportunistic.”
Difficulties with getting diagnosed
Fibromyalgia is most likely a disorder in the central nervous system that makes people experience pain from stimuli that normally wouldn’t be painful.
It’s estimated that as many as 4.8 percent of men worldwide have fibromyalgia.
However, men are less likely to see a doctor or report these symptoms at checkups.
They are also less likely to pass the traditional “tender points” test. This is when a doctor looks for pain in 11 of 18 points across the body to make the diagnosis.
Women tend to have more tender points than men, who still experience widespread pain that’s less localized.
In 2010, the American College of Rheumatology issued new criteria that were revised in 2011 and 2016, moving away from the tender points test.
About nine women are diagnosed for every man. But with current rules, there should be only about twice as many diagnosed female patients as male, Clauw told Healthline
In one study, a research team including Clauw used survey data to identify likely fibromyalgia sufferers in a county in Minnesota.
Twenty times more men reported symptoms than had a diagnosis, compared to three times more women.
Is your complaint dismissed?
Both men and women can have trouble getting support when they describe fibromyalgia symptoms.
Doctors usually haven’t experienced that sort of pain themselves, she notes, so they can’t relate.
“Bad sunburn pain, check. Ankle sprain, been there. Sore throat, yep, had one last month myself.… But come into the office trying to describe a deep, aching, burning muscle pain that is migrating throughout your body, and you will get blank stares,” she told Healthline. “I still remember the you-are-a-crazy-person look my doctor gave me in medical school when I tried to explain that it felt like my neck was tired of holding up my head.”
Doctors may be skeptical that the condition even exists, Clauw and co-authors noted in a December 2017 paper in Postgraduate Medicine.
That’s true of many illnesses, including asthma, before the cause is clear.
Too few doctors know about the “studies that show fibromyalgia to be a very real disease,” the researchers wrote.
There are a cluster of clues, including unusual connectivity among brain networks involved in pain and abnormal levels of glutamate, the main “excitatory” or stimulating neurotransmitter.
Fibromyalgia runs in families, and a genetic vulnerability may be one risk factor.
Often patients have a history of pain problems, such as headaches or abdominal or jaw pain, Clauw said.
The condition may be triggered by an episode of major stress such as a car accident or serious infection.
To pin down a diagnosis, doctors need to rule out a thyroid issue, lupus, and rheumatoid arthritis.
These doctors look for widespread pain lasting at least three months. A patient’s muscles may burn, twitch, or simply feel tight.
Or they may wake up unrested and feel fatigue through the day. Most fibromyalgia patients have trouble staying asleep through the night.
Another symptom is “fibro fog,” or difficulty concentrating. Anxiety and depression are more common among fibro patients than the general population, but most of them don’t have a mood disorder, according to a large Dutch study published in 2015.
These patients might have digestive issues — constipation, irritable bowel syndrome, queasiness.
The stigma for men
More than 800 men with fibromyalgia participated in a survey, either taken online or given through in-person interviews at community health events in Tennessee and the Washington, D.C., area, about how the illness affects them.
Nearly all of them reported depression as their top symptom.
“Fibromyalgia has changed my entire life and the lives of my family. Bluntly, it sucks,” said a 62-year-old man.
The researchers also gathered responses from 120 men who knew someone with fibromyalgia and 238 women who either had fibromyalgia or knew someone who did.
“One in ten of the respondents expressed that there is a stigma on this illness for men,” Daenuka Muraleetharan, who conducted the study for the national nonprofit Men’s Health Network, told Healthline. “We found that really interesting.”
Nearly 400 people said that social expectations for men led them to have a different experience than women.
“Men were told they didn’t have any condition,” Muraleetharan said.
But as the illness became worse, its impact couldn’t be missed.
In all, 92 people said they had lost their job because of fibromyalgia and 82 had enrolled in the Society Security Disability Insurance program because they could no longer work.
“Ten years ago I was… a rising star in a major IT company, a father of four kids…. Today, due to fibromyalgia, I am isolated, living on a disability pension, spending nearly all my time moving from one therapy to another or so tired I cannot function as a human being,” a 40-year-old man said.
Adjusting work tasks and hours early on could help keep men on the job, the authors of a Finnish study observed.
“But for some patients the experience of feeling healthy or pain free might be nothing but a fading memory,” they wrote.
If you have fibromyalgia, you might well do best with your own package of solutions. It helps to steer clear of standard mistakes — taking opioids or getting fruitless surgery.
Opioids don’t tend to work for fibromyalgia and may actually promote the underlying hypersensitivity and aggravate symptoms, noted researchers of the Postgraduate Medicine paper.
Similarly, there’s little evidence that NSAIDs such as naproxen work for this condition. Surgery and injections also aren’t likely to work.
All of these ineffective treatments carry risks of side effects. Opioids are addictive, NSAIDs are rough on the stomach, and surgery can lead to postsurgical pain.
Several medications have been approved for fibro and are a better bet.
However, it can be difficult to get relief. In one study, a third to nearly a half of fibromyalgia patients, depending on the medication, dropped their prescription within a year.
Aerobic exercise is recommended. But it’s not a cure-all.
According to a 2017 Cochrane Library review, exercise may not relieve symptoms such as fatigue and stiffness. There’s also not a strong case that it helps long term.
According to the National Center for Complementary and Integrative Health, if you’re short of vitamin D, a supplement may cut pain.
There’s also promising research on transcranial magnetic stimulation (TMS) for fibromyalgia symptoms, though TMS may trigger headaches.
Liptan points to evidence that fibromyalgia arises from inflammation in the brain, a theory that suggests new treatments.
She treats patients with low doses of naltrexone, a drug used in higher doses for alcohol and opiate withdrawal.
In addition, research is under way to pin down how the marijuana plant can best relieve fibromyalgia symptoms.
Research has lagged in this area, Liptan argues, explaining how the bias that labels fibromyalgia a “woman’s disease” has hurt women, too.
“If this illness primarily affected males, I think we would have a cure by now, or at the very least a well-funded governmental institute dedicated to finding a cure,” she said.