In the late winter or early spring of 2003, I was asked (along with a number of other guys) to be interviewed by Elisabeth Deffner for an article she was writing about men with fibromyalgia which was to be published in the Fibromyalgia Aware magazine. After an hour long phone interview, my thoughts were given one paragraph (3rd from the bottom 
). But thats okay. I must have been having a real bad day because according to copies of emails in my "email archive" ... the day after the phone interview I could not remember anything about it or even if it had happened. So as far as I know ... during the conversation I could have had 30 seconds of printable input ... and the rest was just mindless drivel hahaha.
To the best of my knowledge, the article was published and available via the magazine in June 2003. The following is a copy of the article, which was emailed to me by the author. Copyrights for this article are by Elisabeth Deffner and Fibromyalgia Aware
Men with Fibromyalgia
by Elisabeth Deffner
"I just felt like I had the flu all the time. I just hurt all over. I kept going to the doctor for the flu, and he kept putting me on antibiotics. Finally I found a doctor that realized what I had."
Sound familiar?
In many ways, this fibromyalgia patient's experience is typical: chronic pain, sleeping trouble, irritable bowel syndrome, a willingness to try alternative treatments and therapies, difficulty in getting a correct diagnosis.
But in one very important way, Bob Hall, 52, is not typical. He is one of the estimated five percent of fibromyalgia patients that is male. Where fibromyalgia is concerned, gender difference is more than Y chromosome versus X, or how the thought patterns of people from Mars vary from those of people from Venus. Men react differently to the knowledge that they have fibromyalgia than women do, and other people react differently to male fibromyalgia patients than they do to female patients.
"If you're a man and you have fibromyalgia, [people say] you're lazy; you're shiftless; all you have to do is go out in the yard and shake it off; that's all in the world that's wrong with you, you just have to work 24 hours a day," says Duncan, Oklahoma resident Hall.
"Men are not supposed to hurt, and men are not supposed to get sick."
"A lot of times when [men] walk into a doctor's office and say, 'I have fibromyalgia,' the doctor raises an eyebrow," agrees Dr. Michael McNett, medical director of Chicago's Paragon Clinic, which serves 1000 fibromyalgia and myofascial pain patients. "It doesn't take a whole lot to open that wound up for guys." Anyone's world would be rocked by a diagnosis of fibromyalgia-but for men, the situation is exacerbated by the fact that their self-image is challenged by the very nature of the disease. Once the breadwinners for their families, men with fibromyalgia may have difficulty getting to a job every day, and finally end up staying home while their partners support the family. Their physical strength and stamina diminish, and their sex drive lessens (becoming almost eradicated by some treatments, like antidepressants). And then there's the label that fibromyalgia sometimes erroneously carries: "the woman's disease."
"Sometimes I just feel like we've been stripped of everything," says Hall, "by the doctors, by the medical community, by our families." Mark Ostermiller, 34, is a handyman who does everything from set up swimming pools to remodel homes
to support his family (Ostermiller is married and the father of five children). He does it all through chronic pain, intense irritable bowel syndrome, incredible amounts of fatigue, and sleep apnea. There are days he has to tell his customers he can't keep an appointment. "Generally they understand," says the south Oregon resident. "I have a lot of repeat customers that are really understanding and nice people."
Getting his family to understand what he's going through isn't as easy.
"I have a hard time getting empathy or sympathy from the wife because she's heard 'I hurt' so many times that it doesn't mean anything," he says flatly. "Last week was a really bad week," he continues. "My back is popping in and out with every step I take; my insurance has dropped my chiropractic coverage and ability to pay for prescriptions." When his wife reminded him that he'd promised to visit her parents with her that weekend, he told her he would rather stay home and rest.
"She got mad," he says. "I went anyway, of course." That's another effect of fibromyalgia, says McNett: it polarizes relationships. One partner's fibromyalgia can expand fissures that had been almost invisible; but sometimes the diagnosis can bring couples closer together. For Larry "Sparky" Sparks, the diagnosis of fibromyalgia was not detrimental to his marriage. Separated from his wife when he received his diagnosis four years ago, he didn't call to tell her about it right away - though he did tell his boss at the credit card processing company where he worked. "I couldn't even hold the tears back," recalls Sparks, 55. "I couldn't see myself as a little old humpbacked man sitting in the corner in a wheelchair - and that's the image I got of myself immediately."
Things haven't turned out the way he envisioned in those first shocked moments. "I'm not in a wheelchair yet," he says, "and I'm not looking for one." Though he does take Vicodin to take the edge of the pain, most of his treatments are natural. He takes
additional vitamins and calcium supplements with vitamin D-and he keeps himself moving. He has his mail sent to a post office box so he has to leave home to retrieve it; his living quarters are on the second floor of his house, but he put his computer in a
first-floor room so he has to walk upstairs and down all day. And a year ago August he and his wife of 35 years renewed their wedding vows. "She's been extremely supportive of me," says Sparks, who lives north of Omaha, Nebraska. "She's been there when I couldn't do anything but sit there and cry about it."
Like most fibromyalgia patients, men with fibromyalgia can find comfort and support in their families as well as in groups of other fibromyalgia patients-but even the search for a support group is complicated by gender differences. Sparks remembers the time he visited a local support group and found himself the only man in the room. "It was such a downer for me," he recalls. "They were friendly, but they were discussing some of their [gender-specific] problems like men discuss some of their problems. I was having a hard time relating to a 'bad month.'"
He doesn't suffer from a lack of support, though. Sparks found an online group just for men with fibromyalgia and their partners. He now moderates the group, where men can discuss the issues that are unique to their experiences as fibromyalgia patients.
Hall, too, found support online (he also moderates a support group in his Oklahoma hometown). Actually, he didn't find support-he created it by launching a website, menwithfibro.com. Growth was slow at first, but now his site gets 40,000 unique hits every month from people craving information and understanding "listeners." The site includes information about recent studies, Hall's personal experiences, and a series of forums on topics like working at home, sexuality, and medical issues (McNett moderates that forum).
"Sometimes no one but another man can really understand what [a man with fibromyalgia] is going through. If he's in a support group with another woman, they can really have a good conversation about the disease itself, but [not] as far as the other
emotions-the stress of being a man with fibro," says Hall. In a forum filled with other men and their sympathetic partners, a man with fibromyalgia can securely confide
very personal issues, ranging from the sexual to the purely medical, from tense family dynamics to frustrating doctor responses.
David Squires, president of Arizona-based To Your Health, a company that sells natural remedies to assuage fibromyalgia symptoms, knows that from experience; that's why he organized the first all-male fibromyalgia workshop in 1994. Squires began experiencing fibromyalgia symptoms when he was just 15, though he wasn't diagnosed until many years later. He had a wife, two children, and his own tool-and-die shop by age 29, but as his fibromyalgia symptoms worsened he lost his family and the business.
He describes his life as a miracle-he runs a successful business and remarried 17 years ago-but he hasn't forgotten his early struggles dealing with his diagnosis. "Men can't say, 'I can't mow the lawn. I can't go to work,'" he says. "It's very difficult for men, because they have a hard time expressing [what they're feeling]. [Men with fibromyalgia] don't fit into society anymore. They're totally lost."
"Emotionally and psychologically, it does affect men far more dramatically than women understand," says Peter Horan. The Ontario, Canada resident, 50, was diagnosed in 1996. "Women say the doctors don't understand them, they don't believe them, and all the rest of it. Maybe the guys do have an easier time with the doctors - but the guys certainly don't have an easier time with the general population. Maybe the doctors accept what we're telling them as truth ... but the general population says, 'Aw, ya wuss. Suck it up and move on.'"
From childhood men are trained to "suck it up," to put on a brave face, says McNett. There has been some speculation that this is why so few men are believed to have fibromyalgia; trying to tough it out, they don't visit a doctor and so don't get a diagnosis. If this is the case, men may form a far higher percentage of fibromyalgia patients than it seems.
"Society has taught us that men are supposed to be strong. Men don't cry," says Oregon resident David Kauke, whose fibromyalgia symptoms began in childhood.
"I tend to challenge all those preconceived notions." Hall phrases it more strongly.
"There's just a tremendous amount of persecution," he says. "There's no wounds, no sores, there's no anything for [other people] to see that anything's wrong with you, because fibromyalgia is the invisible disease."
You can find more information about men with
fibromyalgia at these sites:
www.menwithfibro.com
http://groups.yahoo.com/group/FibroMenSupportGroup
Apparently, after I received a copy of the article they chose to also provide a link to my website. I am assuming this because a few people have told me they found my site listed in a magazine ... and this is the only magazine I think it might have been
