Thursday

Men with fibromyalgia

fibromyalgia in men
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. 

What Men with fibromyalgia say

"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."

Men with fibromyalgia quotes

"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. 

what men say about having fibromyalgia

"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.

fibromyalgia symptoms in men


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.


fibromyalgia in men and resources
Voices of Fibromyalgia

POSTS BY MEN ABOUT FIBROMYALGIA:
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 MenMen 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.

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

LINKED UP AT FIBRO FRIDAY
                                                                         
Men with Fibromyalgia

                                

9 comments:

  1. I have been enjoying this wonderful "Invisible Illness" for 12 years (diagnosed time) took a few years to get the diagnosis which I declared to be false! I joined a forum to learn more about it and was One of 4 men on a forum of 8,000 women. Great odds but to bad everyone was so sick and of course I am happily married :) Since then I have found thousands of other men like me. I think most men ignore the pain until it becomes impossible to. I even had surgery. they put a plate in my neck from c2-c5 to "fix" my shoulder and arm pain. It did not work but like most guys I thought it was a "real" problem not fibro. I was wrong, I finally admitted it, I had a "womens disease" then came osteo, followed by a thyroid failure..more womens diseases..but fact is Fibro is a MANS disease too. Thanks for posting this article. I think I shall steal it for my blog if I can find the energy.....Doc fibronews.com

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    1. Thanks Robert, it's great to hear your story and we need more guys to do this so it stops being considered a "women's disease". It's hard enough having it let alone all this extra concerns

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  2. So glad to see so resources for men with fibromyalgia. There are not many, so any is a relief to see!

    I found your post at the Fibro Friday at Fibro Blogger Directory.

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    1. Thanks Buba4Turtle for finding my fibro blog and taking the time to comment. You are 1 in a million.

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  3. Great post........Fibromyalgia is frequently associated with psychiatric conditions such as depression and anxiety and stress-related disorders such as posttraumatic stress
    disorder.Acupuncture in Ellicott City

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    1. Thanks for your input Fitz. Do you think men get these symptoms more than men? Do you know of any studies?

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  4. Valuable Post.
    It is helpful to fibromyalgia patient.
    Thanks for sharing !
    Fibromyalgia support groups

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    Replies
    1. Thanks for taking time to let me know.

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  5. Very important story to share. Good insight.

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Thanks for your input