On the Fringes: Men and Fibromyalgia

Reproduced with permission from The Fibromyalgia Connection, the newsletter of the Fibromyalgia Association of Houston, Inc.*

Although Fibromyalgia falls into a category of diseases and syndromes that disproportionately affect women, Fibromyalgia isn’t a woman’s disease.

One in eight FM patients is male. This number may not be a true reflection of how prevalent FM is in the male population because of the very nature of the syndrome. FM often goes undiagnosed for long periods of time, and some sufferers do not receive a proper diagnosis at all. This, coupled with the fact that men are less likely to seek medical help, means that it is possible that there are far more men with FM than reported.

[For example, the first-ever large population-based analysis of U.S. Fibromyalgia incidence, based on insurance claim records for a population of 62,000 adult enrollees from 1997 to 2002, indicates the female to male mix is about 1.64 to 1.00, or 62 percent/38 percent. Go to the ImmuneSupport.com archive for more information on this analysis, at www.immunesupport.com/library/showarticle.cfm/id/7183/]

Although not all men have difficulty getting the proper referral and diagnosis because they are men, the perception that Fibromyalgia is a disease that primarily affects women may also hinder men from receiving a proper diagnosis.

“It took 15 years, 12 doctors, and hearing over and over that there was nothing wrong with me. Two doctors said that if I were a woman, they would say it was FM. This was before a doctor actually diagnosed me with it officially,” says Michael Alsup, who began to experience FM symptoms in his early 20s.

Alsup also suffers from other illnesses including chronic fatigue, irritable bowel syndrome, Raynaud’s phenomenon, chronic insomnia, and a recurrent seizure disorder.

After getting diagnosed, accepting it as well as coping with it is the same for men as it is for women, but societal pressures and expectations of men present unique challenges. Even in the 21st century, men are judged by their ability to provide financially for their families.

Society’s masculine ideal continues to expect men to be physically active and hardworking. FM threatens all patients’ abilities to live up to these expectations, but its impact can be more difficult for men to cope with. Fibromyalgia can be debilitating, which can affect a person’s ability to work.

“Since the three accepted stereotypes for men are that they are athletes, intellects, or artists, I’m finding it difficult to maintain my self-image when I’m rarely able to participate on any of those points. Either I don’t have the energy or I can’t get the thought out before it’s gone,” says Dan Brooks, who began to experience FM-like symptoms as early as seven years old.

As with any chronic illness, relationships are affected especially because of the very nature of FM. Fatigue may cause patients to withdraw and become less physically active. Because there are no definitive laboratory tests to diagnose FM and no apparent physical signs of the disease, family and friends may be skeptical of an FM diagnosis.

“Others are mostly sympathetic, but many do not understand why I cannot work a regular job when I look healthy and can do so much on occasion,” says Alsup.

Like other FM sufferers, Alsup has had to deal with people’s perceptions of him based on their lack of understanding FM. Alsup says some people believe that something may be afflicting him but they believed that it is coupled with “a strong leaning toward just plain laziness and wimpiness.”

These perceptions, along with a change in lifestyle, can have a detrimental impact on FM sufferers.

“Most of my male friends have dropped by the wayside as I did less and less of the active, macho activity trips and adventures with them. Some members of my family have just given up on me,” says Alsup.

“I dread the person who mutters, ‘You’re no sicker than I am.’ Fortunately, that’s happened to me only once. I was on my best behavior, and replied, ‘I’m so sorry. Is there anything I can do to help?’ The stunned look was priceless,” says Brooks.

1. Do you need advice from other men? Go online.
Here are some online resources for men with Fibromyalgia.
n menwithfibro.com – It offers resources for men coping with Fibromyalgia. The Web site includes a section with men’s stories, a chat room, and a message forum. It also explores sexual issues as related to FM.
n FibroMenSupportGroup – The online support is part of Yahoo! Health support groups. It is a members-only group. To learn more, visit http://health.groups.yahoo.com/group/FibroMenSupportGroup
n The Men’s Zone – This site offers information and support for men with FM. Visit http://www.plaidrabbit.com/fms/menspage.htm
2. Go to a support group meeting. Although the women at support group meetings outnumber the men, men are most welcome. Woman are often happy to see men who can empathize at support group meetings. “In the Fibro community, however, we seem to be treated like gems – the rarest of the rare – a man who understands and sympathizes,” says Brooks.
3. You are not alone. Approximately one in eight FM patients is a man. “Find other male FM patients and forge friendships with them. They will be the ones who truly understand and will provide the companionship and friendships to replace those male friends who fade away when you can no longer share their pleasures,” says Alsup.
4. See your physician. He or she will be able to provide you with information about FM and your treatment options.
5. Educate yourself on FM.


* This article was first published in the January-April issue of The Fibromyalgia Connection, newsletter of the Fibromyalgia Association of Houston, Inc. To read this and other issues, visit the FMAH Web site at www.fmah.org/ Sheshe Giddens is the newsletter’s managing editor and graphic designer.

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