Men with fibromyalgia

Fibro EA

Here I am trying to shed some light on what it is like to be a man with fibromyalgia. I have used comments from guys with the condition and the few studies I could find. 

"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." 

"As well as being physically difficult, it’s emotionally draining. It feels like you are grieving for a lost life. Over time it takes its toll." says Rob Bimbler a UK blogger diagnosed with fibromyalgia.

"As a man living with Fibromyalgia, it strips me of my masculinity. I want to be the strength, dare I say the hero. But, I’m neither and it hurts me to my core."

"This condition is in no way an attempt to avoid yard work or similar household chores." says Peter, a US blogger living with fibromyalgia. "C’mon, only girls get this, right? Not me, right?"

"People used to respect me, and now, how can anyone respect what I have become? Weak, frail, in pain night and day, tired all of the time, and not enough energy to do anything.  Who could respect anything like that?  Who could love anyone like that?" Male with fibro. 

"I could not believe it. Nice having an answer, but come on… a women’s disease! One with no cure, poor prognosis, multiple medication failures." said Bob about receiving a diagnosis of fibromyalgia. " I was sent into an emotional downward spiral. This was a disease that you did not want to tell others that you had, they would not believe it was a disease anyway. I Looked fine!"

For men, fibromyalgia has an impact on physical health, and also largely on mental well-being, as well as relationships, and careers. We can see from these comments that there is a stigma attached to fibromyalgia for men regarding their feelings of masculinity, their abilities to continue working and the fact that fibro is considered a female condition. Many men feel extra stress due to the stigma of fibromyalgia being perceived as a women’s disease. Nearly 400 men in a Finnish study said that social expectations for men led them to have a different experience than women. 

What does the research about men with fibromyalgia have to say?

Recent studies indicate that the prevalence of fibromyalgia is increasing worldwide even though a 2012 study suggested that fibromyalgia is underdiagnosed in general, and even more underdiagnosed in men. The results suggest that patients, particularly men, who meet the fibromyalgia research survey criteria are unlikely to have been given a diagnosis of fibromyalgia.

Anyone can develop fibromyalgia but it is most common in adults with the highest rate in women. Men do get fibromyalgia and the ratio is reported at 9:1 that is 9 women for every man. Researchers are not clear why women have higher rates of diagnosis but I believe that it could be that men are either not reporting their symptoms or not being diagnosed with fibromyalgia as many people, doctors included, still believe that fibro is universally a syndrome that women get.

Do men and women have the same fibromyalgia symptoms?
Men seem to have some different symptoms than women according to a 2012 study. 
Men with fibro demonstrate a lower pain severity than women but a longer duration of symptoms and disability. Men have a higher pressure pain threshold (PPT) over the 18 tender points and over the second metacarpal and tibialis anterior muscle than women. the metacarpal is in the hand (see diagram) and the tibialis anterior muscle is in the (see diagram)

Palmer view of the left hand (second metacarpal shown in yellow).

 

Tibialis anterior muscle is in red

In men, the intensity of ongoing pain was associated to a more intense painful response over the neck. This study proposes that there may be a different observable type of fibromyalgia in women and men and confirms that women exhibit lower PPT than men.

In a 2018 survey, with more than 800 male participants with fibromyalgia, the top symptom experienced by the men was depression. 

“I have dealt with depression, anger issues, continual pain, inability to walk, think clearly, and unable to do many activities I previously could do. Many people shy away from me, as they don’t understand the concept of nonstop pain.” (41-year-old male)

Some of the participants talked about fibromyalgia leading to the onset or aggravation of mental health issue including depression, anxiety, post traumatic stress disorder and bipolar disorder. 

What men with fibromyalgia should do

Some of the men, included in this article, also expressed that they felt a relief after talking to other guys with fibromyalgia. So besides following the treatment options presented by your medical professionals we strongly suggest finding a fibromyalgia group for men or one that has men included. 

"Contact with others, some of them men, helped me to understand what I was dealing with and that I was not alone in this." said Doc from FibroNews. 

If you have any more information about fibromyalgia in men or some links you would like to be included please comment below. We would love to hear from you as we found the information to be very scarce.



Voices of Fibromyalgia

POSTS BY MEN ABOUT FIBROMYALGIA:

• What Fibromyalgia is Like for Me? by Rob Bimbler
• Fibromyalgia In Men – Effects Beyond the Symptoms by Dan Neuffer
• Fibromyalgia - Peter's journey

OTHER RESOURCES FOR MEN: 

PINTEREST Board Men with Fibromyalgia

Men with Fibromyalgia has a forum
FibroNews by Doc @Fibromen (twitter)
Facebook groups:
Men with Fibromyalgia (over 1000 members)
Fibro For Men (over 5,000 members)
Fibro Support for Men ( over 1,500 members)

FIBRO CONNECT private facebook group has men and women members.

ARTICLES:
Men with Fibromyalgia at National Fibromyalgia & Chronic Pain Association. (NFMCPA)
How Fibromyalgia Affects Men: Men With Fibromyalgia Talk About Their Symptoms, Diagnosis, and Dealing With Other People's Reactions at WebMD

SOURCES FOR THIS ARTICLE:

Understanding the Impact of Fibromyalgia on Men: Findings From a Nationwide Survey.

Daenuka Muraleetharan, MS, Ana Fadich, MPH, CHES, Colin Stephenson, 

Whitney Garney, PhD, MPH

Fibromyalgia, diagnosis and prevalence. Are gender differences explainable? Bartels, E., Jacobsen, S., Jesperson, A., et al. (2009).

Prevalence of fibromyalgia: a population-based study in Olmsted County, Minnesota, utilizing the Rochester Epidemiology Project.Vincent A, Lahr BD, Wolfe F, Clauw DJ, Whipple MO, Oh TH, Barton DL, St Sauver J.

Gender differences in pain severity, disability, depression, and widespread pressure pain sensitivity in patients with fibromyalgia syndrome without comorbid conditions.

Castro-Sánchez AM, Matarán-Peñarrocha GA, López-Rodríguez MM, Lara-Palomo IC, Arendt-Nielsen L, Fernández-de-las-Peñas C

How Fibromyalgia Affects Men Article at WebMD

PubMed: Fibromyalgia in men and women: comparison of the main clinical symptoms

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