When Zane K. suspected he had fibromyalgia, he mentioned it to his doctor. The response: “He laughed,” Zane recalled in a Facebook post, “and said it was a women’s syndrome.” He had to find a new doctor, endure months of tests, and get a recommendation to see a rheumatologist before he was finally diagnosed with the condition. CreakyJoints member Carl H. had a similar experience: At 38, he felt exhausted and in constant pain. “Getting the doctors to admit I had fibromyalgia was very hard work,” he shared in a post. “I thought I was going mad and it was all in my head.” Fibromyalgia is a disorder characterized by widespread pain accompanied by fatigue, sleep, memory, and mood issues. It’s one of the most common chronic pain conditions, affecting about 4 million adults in the U.S., according to the U.S. Centers for Disease Control and Prevention. (The National Fibromyalgia Associationestimates that number to be higher, around 10 million.) It’s also one the most misunderstood, particularly for men. Some estimates say up to 90 percent of fibro patients are women, and therefore as few as 10 percent are men. That’s why fibromyalgia is often thought of as a disorder that almost exclusively affects women. While it’s true that fibromyalgia is more common in women, recent studies suggest the disparity may not be so great as previously thought. Research indicates that the prevalence of fibromyalgia is actually similar among males and females — it’s just that males are much less likely than females to identify symptoms and be diagnosed with the condition. And survey results published in the journal Arthritis Care & Research found 20 times more men reported fibromyalgia symptoms than had been diagnosed, compared to three times more women.
Why Fewer Men Are Diagnosed with Fibromyalgia
The cause of fibromyalgia is unknown: family history may play a role for some, as certain genes may make you more susceptible. Fibromyalgia may be triggered by physical trauma (like a car accident), emotional stress, or certain infections, according to the Mayo Clinic. And often, fibromyalgia symptoms gradually develop with no one triggering event. As to why fibromyalgia is sometimes overlooked in men, experts suspect a couple of reasons may factor in:
There’s no single test to detect fibromyalgia
To diagnose fibromyalgia, you have to experience widespread pain for more than three months — with no other underlying medical condition that could be causing the pain, according to the American College of Rheumatology. There are no lab tests to confirm a diagnosis, but your doctor may do blood tests and imaging to rule out other health problem that can be confused with fibromyalgia. Read more here about how fibromyalgia is diagnosed. Doctors will also screen for the severity and duration of other symptoms that point to fibromyalgia, such as fatigue, mood disorders, sleep issues, and cognitive problems. “These are all pretty constant,” explains Nilanjana Bose, MD, MBA, a rheumatologist at the Rheumatology Center of Houston in Texas. “It is unlikely or rare that someone has fibromyalgia and doesn’t have a mood or sleep disorder and just has fatigue.” When some doctors see male patients with aches and pains, however, they may not think to ask about other fibromyalgia symptoms as readily, simply because, historically, they were taught to see fibromyalgia more in women. “There could be an unconscious bias on the part of the health care provider,” explains Dr. Bose. In the past, diagnostic criteria for fibromyalgia included a “tender point” exam, where doctors would check 18 specific spots on a person’s body to see how many of them were painful when pressed firmly. To officially diagnose you with fibromyalgia, at least 11 of these 18 points had to test positive for tenderness. Though the criteria changed and tender points alone are no longer used to diagnose fibromyalgia, women in general tend to have more tender points than men, explains Rajat Bhatt, MD, rheumatologist at Prime Rheumatology PLLC in Richmond, Texas — so men have been less likely to pass this traditional test as well.
Gender stereotypes may play a role
While this isn’t true for everyone, in general, “men tend to be more stoic about their pain,” says Dr. Bhatt, “and less likely to express health concerns.” Dr. Bose agrees: Men may feel they’re “not supposed to complain about pain,” which may delay or prevent a diagnosis of fibromyalgia. A survey published in the American Journal of Men’s Health found that men were more likely to wait up to six months before going to their primary care doctor to discuss fibromyalgia. One flagged reason: a general societal belief that a man needs to seem strong and “tough it out.”
Fibromyalgia Symptoms in Men
The science is unclear on whether fibromyalgia symptoms appear differently in men versus in women. One study in the journal Pain Medicine, for example, found that women reported more pain sensitivity while men reported more disability and a longer duration of symptoms. Some research suggests that men have fewer and more mild symptoms than women, other studies suggest the opposite, and still others indicate little difference between genders. What we do know is that chronic, widespread pain is the chief fibro symptom — it’s often described as a constant dull ache that occurs on both sides of your body and above and below your waist. Chronic fatigue, sleep issues, and problems with memory or thinking clearly — often called “fibro fog” — are also common, as well as depression and headaches. The culmination of these symptoms can often be frustrating, and at times debilitating. Some days Harold P. can lift nearly 100 pounds; other days he has trouble lifting a gallon of milk, he shared in a CreakyJoints Facebook post. His memory issues can be crippling: “Did I really just take that med or not? Did I use shampoo or just wet my hair? I lose my train of thought as I am trying to figure things out,” he explains. He’s often in pain, which makes him short-tempered: “Even being touched can hurt.”
Fibromyalgia Stigma for Men
The impact of fibromyalgia on physical health is tough to handle, no matter your sex/gender. But research suggests that men with fibro also feel a heavy burden on their mental well-being, relationships, and careers — in part from social or cultural expectations. In a nationwide survey that included 800 men with fibromyalgia, nearly all said that depression was their top symptom. More than half of respondents (54 percent) reported negative impacts on relationships with both family and friends — saying that while those close to them usually tried to be supportive, oftentimes they would not understand the condition and its effects. Many CreakyJoints members report feeling the same way, sharing how employers did not support them or even their own family members thinking they were exaggerating symptoms. When Will L. was diagnosed with fibromyalgia at age 54, he felt let down: “I’m a big guy, 6’2” and 230 pounds, bearded. I look a lot stronger and healthier than I am,” he shared on Facebook. Because of his symptoms and the physical nature of his profession, Will can’t work the same way he used to and struggles not only with the potential of losing a successful career, but also with how others perceive him. “I fear being seen as lazy when on the outside I look fine,” he says. If someone asks him how he’s doing, he lies: “I’ve learned telling the truth makes them uncomfortable,” he explains. “I often feel shamed, judged, and dismissed.”
How Fibromyalgia is Treated
Treating fibromyalgia includes a mix of medication and self-care to help minimize symptoms and improve general health. No one treatment will work for all fibromyalgia symptoms, or for every person. “Treatment is based on the individual, rather than sex/gender,” says Dr. Bose. Talk to your health care provider to determine the best treatment plan for you. You can read more details here about fibromyalgia treatment, but it may include a combination of: Medication to help reduce pain and improve sleep, including:
- Over-the-counter or prescription pain relievers
- Antidepressants: medications such as duloxetine (Cymbalta) and milnacipran (Savella) may help ease the pain and fatigue associated with fibromyalgia.
- Anti-seizure drugs: Epilepsy medications may help reduce certain types of pain, such as gabapentin (Neurontin) to help ease fibromyalgia symptoms and pregabalin (Lyrica), which is FDA-approved to treat fibromyalgia
Physical therapy to help improve strength, flexibility, and stamina. Cognitive behavioral therapy (CBT) to treat underlying depression and address the impact that fibromyalgia is having on your quality of life. CBT is a type of talk therapy meant to change the way people act or think. Read more here about CBT and its use in chronic pain conditions. Lifestyle changes to help improve symptoms and everyday function. Some self-care tips include:
- Make time to relax every day. Deep-breathing exercises and meditation will help reduce the stress that can bring on symptoms, recommends the American College of Rheumatology.
- Get enough sleep. Go to bed and wake up at the same time each day and limit daytime napping. That will help set a regular sleep pattern so your body get the rest it needs to repair itself, physically and mentally.
- Stay active. Exercise may be tough at first, but start low and go slow, gradually adding daily fitness to your routine, like walking, swimming, or stretching. Regular exercise often reduces pain and fatigue. As fibromyalgia symptoms decrease, increase your exercise a little at a time.
- Know your limits. “Regardless of work or family you must be kind to yourself,” advises CreakyJoints member Paul G. “Men need to realize they can be open about the illness — and their limitations.” If you do too much on your good days, you may have more bad days. Keep your activity on an even level. Read more here about energy pacing with fibromyalgia.
For more advice to manage fibromyalgia, here are 18 survival tips from fellow fibro patients.
Track Your Fibromyalgia Symptoms with ArthritisPower
Join CreakyJoints’ patient-centered research registry and track symptoms like fatigue and pain. Learn more and sign up here.
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