Fibro Lads Mag — Special Issue

Fibro Lads Mag — Special Issue
October 2011
WSM Fibro Support Group
Men with Fibromyalgia - How Men Are Different
This Issue
As it’s fairly hard to access
info for men with fibro, I
decided to gather as
much as possible together
in one magazine!!
I hope this is of some use
to you!
I also hope you use some
of the website links I’ve
given you to find out
more.
While societal expectations are indeed changing, it
has long been perceived that the
male has unique
and different responsibilities,
within the family,
than does the female member.
For generations women had a tough time convincing doctors to take them seriously for
many medical conditions, especially Fibromyalgia. Women have been called hysterical
and told to curtail their active imaginations. However, men with Fibromyalgia are dealing
with an entirely different issue; they just don't talk about it. Can you blame men for not
coming forward with a women's disease when she is being told that it's all in her head?
Now, let me tell you a little about this serious syndrome for both men and woman. Not
necessarily the facts the doctors give you, but how the sufferers perceive it. Do you remember the flu that kept you from getting up out of bed for two weeks? Remember how
difficult it was getting up out of bed and going to the bathroom? You were tired, uncomfortable, and ached all over, so you took medication to sleep. Now, I want you to imagine two things. First, you have no medication to ease the flu symptoms and second, the
flu never goes away. In fact, Fibromyalgia does progress, not only does your pain and
fatigue increase, other symptoms start appearing, regardless of whether you are a man
or a woman.
With men, these flu-like symptoms manifest themselves a little differently at first because of gender roles and the physical differences between men and women. Men don't
go to doctors and often become stoic, hiding symptoms. Additionally, men have a tendency to isolate more than women and don't want to be seen as whiners. They often
wait until they can't function at all before seeking medical attention. Fibromyalgia is
sometimes called the invisible disability and for men this is especially true. I talked to
Ron Mesic, Michigan, who began suffering with fibromyalgia as a teen. Ron said, "I seriously suspect that when I started seeking help, the prevailing attitude of medical professionals was that men should be tough, and importantly - modern medicine doesn't cure
much, they just make the patient comfortable while the body cures itself."
Now, don't get me wrong, women will also push through the pain and fatigue to take
care of their jobs, family, and home, but they will also seek medical attention much earlier in the process. Gender roles may not be the only reason though since
insomnia manifests itself earlier in women. Ron also pointed out another difference,
"Men are also more difficult to diagnose, since the physical muscle structure of men is
different, they often don't have pain in the 18 pressure points that doctors often use to
diagnose fibromyalgia." Of course, as the syndrome progresses, men and women
quickly become equal.
So, whether you are a man or a woman, you need to go to the doctor, get diagnosed,
and stop suffering in silence. As more people are diagnosed, the more research the
pharmaceutical companies are willing to finance.
Fibro Joke
Two men had been friends for many decades and were long time suffers of Fibro. Over the
years, they had shared all kinds of activities and adventures. Lately, their activities had been
limited to meeting a few times a week to play cards.
One day, they were playing cards when one looked at the other and said, 'Now don't get mad
at me ... I know we've been friends for a long time, but I just can't think of your name! I've
thought and thought, but I can't remember it. Please tell me what your name is.’
His friend glared at him. For at least three minutes he just stared and glared at him. Finally
he said, 'How soon do you need to know?'
Page 2
Fibro Lads Mag —
The Paradox Of Pain: A Male Perspective
By Gavin Levy
As young boys growing up, we are taught by society not to cry when we
scrape our knee. If we bruised a knee when playing football, we learned
how to hold the sensation of pain on the inside. In England you’ll hear the
expression, ―Grin and bear it,‖ and this is just what we did. So it can certainly knock a man’s ego when you cannot ―grin and bear it.‖
When the cycle of pain goes on every day, week, month, year, it makes the
―If I just ignore it, it will go away‖ approach seem ridiculous. It is tempting
for a man who has fibromyalgia to see himself as inadequate or not manly
anymore. I am going to put it to you that we are the iron men of men, the
strongest of the strong, and I’m going to tell you why.
If we think about the toughest men in society, we might think of those in
the mafia, or boxers, or the Navy SEALs. These men know how to inflict
pain on others and endure large amounts of pain themselves. And yet, yet,
there is a reprieve from their pain. A boxer has to last the fight and can
then recuperate over the next days or weeks. A mobster may inflict a great
deal of pain on someone, but this is usually going to happen in an intense
period of minutes or perhaps hours. It is only perhaps the likes of a Navy
SEAL who will come close to our league by having to potentially endure the
torture of months or even years of pain.
This being said, men with fibromyalgia are keeping good company. The difference for many of us is that our pains have been unrelenting, unyielding,
uncompromising, ruthless in their execution, and for many of us a continual daily companion. And yet through it all, we manage to keep on smiling,
keep getting back up, and refusing to give up this dream called life.
It is also worth noting that we get no sympathy from those around us because most people have no concept of what we are living with. I have
found that I will get more sympathy from having a common cold than from
fibromyalgia. Remember, people can relate to a cold—they can see a cold—
but not the roaring tiger within us.
Of course, we are all working towards relieving our symptoms sooner
rather than later—only a true man could do that—and with new knowledge
comes new hope.
Only a man of iron strength could look pain in the eye each day and say,
―You will never conquer me, for I am stronger.‖
How many men could deal with the numerous challenges of this complex
condition? Perhaps only a certain type of man—a real man!
October 2011
Page 3
Men with Fibromyalgia (From menwithfibro.com website)
Several years ago, someone ask me what it is like to be a man, and have fibromyalgia. I said, ―Well, it
is like Samson, when Delilah cut off his hair.‖ Later on that night, I wrote this in my journal: (Journaling
is a good way to get emotions out, and to realize things, to accept, to understand....)
Surely, someone gave this disease to me. I know they did. If I ever find out who did this to me, I want to
make sure I pound them into the soil. Any more it seems like anger is all I can feel.
What happened to the other emotions? When did love and compassion get replaced with anger and
irritation? Who did this to me? Sometimes I get so irritable, I just know that hitting something would
help.
Hey, I am a man, the center of my universe, I am supposed to be able to do anything. The head of my
family, the warrior, the hunter, and the king of the hill. 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?
This pain, it never goes away. When does it end? Night and day, never ending, relentless in its endeavor to take me down. I thought at one time, I could take anything, I could fight anything, how can
you fight something that is all in your head? Or that is what the doctors say.
Why do the doctors treat me like I am almost some type of subhuman genetic freak of nature? And why
to they treat me like some drug addict, just trying to get more pain pills? I am not a drug addict, I am
not some piece of worthless flesh, bone, and blood. I am a human being, why, oh why, can’t the doctors and other people see this? Sometimes when the pain is so great, I lash out in anger and almost
hate, at the very people that are left that care about me. This is not me. What happened? And when
did it happen?
I used to have friends but now, it seems like I have said ―Well, I don’t feel good today, so I am going to
have to stay at home‖ one time to many. Everyone assumes I am ―sick― so they never call anymore. I
feel so alone, and at the same time I don’t want anyone around me.
Afraid? Yes, I am afraid. It is a word I never thought I would use, but I am afraid. I am afraid of being
alone, being forgotten, being unloved and unwanted, and I am terrified that I will never be needed
again, for anything. Work? That is almost funny. I’m losing one job after the other, because I can’t
seem to work eight hours a day any more. I am losing my ability to ―hunt‖ to bring home the food, the
act of contributing to anything anymore. I just can’t do much of anything that requires endurance. I
know someone did this to me. They had to. I don’t deserve to live like this.
After a while, it finally settled in. Now, in some demented way, I don’t know what life would be like without the pain. It has become some kind of companion, in a way. Something which I am accustomed to,
but willing to drop by the wayside in a heart beat. Now a degree of acceptance has set in, and I have
learned volumes about compassion. I still feel like no one but someone with fibromyalgia can understand the pain, but I am compassionate towards anyone’s illness now, regardless of what they have. I
realize people can struggle with pain in what seems like a lifetime, and it has only been one day. I accept that when I awaken the next day, I will get to do it all over again. I have understood now, that faith
in God, humor, good doctors, and renewing that ―hunter/warrior‖ instinct is the key to surviving fibromyalgia. And most of all, love of mankind.
Even though, I sometimes hang on to the belief that someone gave it to me, I don’t’ have to take it out
on the world any more. I can be a part of the world now, just more on my terms. I can say no, without
buying tons of guilt. I can be a part of anything I want, but now the part is smaller, and I can accomplish things. It just takes a little longer.
So I'll end this with one thing. Samson did grow his hair back.
menwithfibro.com
This is a brilliant site!!
Why don’t you take a look ...
It is essential that all
individuals with
Fibro, especially
males, must confront
their own
expectations of
themselves.
Page 4
Fibro Lads Mag —
Men with Fibromyalgia
by Elisabeth Deffner
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."
"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 apnoea. 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.'"
Page 5
October 2011
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."
SOURCE: Peter's Fibromyalgia & Personal Website
Fibro Joke
Three brothers, all with Fibro, live in a house together. One night the first brother draws a bath. He puts his foot in and pauses.
He yells to the other brothers, 'Was I getting in or out of the bath?' The second brother yells back, 'I don't know. I'll come up
and see.' He starts up the stairs and pauses, 'Was I going up the stairs or down? The third brother is sitting at the kitchen table
having tea listening to his brothers. He shakes his head and says, 'I sure hope I never have brain fog that bad, knock on
wood.' He then yells, 'I'll come up and help both of you as soon as I see who's at the door!'
Page 6
Fibro Lads Mag —
Those Who Can't Do...
By: Eric Vought
Reprinted from FMOnline
I am a man—an outdoorsman—with fibromyalgia: I love backpacking, wilderness survival, biking,
hunting, archery, farming, medieval re-enactment, forest management, building a home. Fibromyalgia has changed my life and identity; at the same time, it removed many of those things
which I formerly used to do to relieve stress and anxiety. Over time I have learned to redefine
myself and find new ways to feel useful and capable, but it has not been easy.
Pushing oneself
When I first started developing my condition, I did not know what it was. I just knew that I could
not do what I used to and it frightened me. I mentioned to a doctor that I was taking 2400 mg
of Ibuprofen a day to keep moving. She said, "Well, we all get older." "Ma'am, I'm twenty-two."
beyond the
physical limits will
typically result in
a relapse of the
condition thus
only placing the
individual deeper
and deeper into
the hole of
recovery and a
never ending
vicious cycle
begins.
I skipped most of high school, started my own business after graduating college early, worked
hard, played hard. Whenever I am not moving, ask me if I am okay. If anything, I was always pigheaded about pushing too hard. Finishing a five-mile run on a badly sprained ankle cost me
most of a season of track—but it just did not hurt that bad. When I am asking for help, warning
bells should ring; tell that to the doctors.
Once some of the more severe, visible effects started kicking in, it got easier. "My fingers are a
bit swollen today," I would say, and the doctor's eyes would bug out. Then they would listen next
time I said I was in pain. When they saw my blood pressure, normally a cool ninety over sixty, go
up and stay up during a flare, it got a bit more attention. Then, it was tests, tests, and more
tests.
After three years of testing, I got a diagnosis—if you could call it that. After eight years, maybe
twenty doctors, a broken marriage, a broken business, and a lost home, I am still just fighting a
holding action—slowly losing.
During a bad day in winter, I am bound to a wheelchair. On a good day in summer, I can sling
hay bales with the best of them. In fact, I have to. I know that the more I do in the summer, the
better I can cope with the winter; better muscle tone, cardiovascular fitness, higher morale,
means farther to slide when the weather turns cold.
How do I keep from going crazy the rest of the time? I teach. Handcrafts, herbology, archery,
survival skills. On bad days, I have people wheel me out to the archery range. I can't shoot, but I
can watch their form, hear the subtle twang of a misfire, or see an underspined arrow fishtail
as it leaves the bow. Some days I can shoot; other days I can help. I will tell you: it hurts. It hurts
to watch while someone does something you love and cannot do. But it beats sitting at home
and feeling sorry for yourself.
Many of the folks I have helped now shoot better than I will ever shoot again. I teach people
crafts at every opportunity. My (new) wife and I give talks at the church on disaster preparation
and on traditional skills. I write down everything I have learned. As my daughter gets older, I will
teach her everything I can. When I was well, one person did the things that I did. Now that I am
sick, I watch the skills multiply in others. My illness, in some slight, immeasurable way, has
made one small corner of the world better.
It still hurts, but pain with a reason is so much better than pain with none. I sleep a bit better.
My wife has to tell me to sit down a little less often. I am not frazzled and grumpy around my
young daughter. I still wish I could just pick up a bow or an axe, but I know I make a difference,
so I let it be… at least, until it gets a bit warmer.
Page 7
October 2011
It's a Guy Thing: Men with Fibromyalgia -By: Lisa Lorden
Reprinted from FMOnline
The relationship between fibromyalgia (FM) and gender has been a source of confusion and controversy among
researchers and patients alike. Although FM is clearly more prevalent among women, the illness does afflict men as
well.
Little research has been conducted that measures the prevalence of fibromyalgia, and estimates vary widely as to
the proportion of male versus female patients. A 1999 epidemiology study conducted in London found a female to
male ratio of roughly three to one. However, a 2001 review of the research literature in Current Rheumatology Reports stated the ratio was nine to one.
The gender gap goes beyond the numbers. Research has shown that FM symptoms differ between men and women.
A recent study in the Journal of Rheumatology found that men with fibromyalgia seem to have fewer and milder
symptoms than female patients, including number/severity of tender points, fatigue, and irritable bowel. However,
an Israeli study that compared 40 men and 40 women with FM, matched by age and educational status, found that
men reported more severe symptoms than women, in addition to decreased physical function and lower quality of
life.
It's clear that more study is needed before the true nature and prevalence of fibromyalgia in men will be known. But
what's a guy with this illness to do in the meantime? It seems obvious that a man's experience with this disease
would be quite different from that of a woman, if only because of the sheer numbers. One man with FM writes, "at
times I do feel isolated being the only male in most support groups. I try to keep my sense of humor."
It's A Man's World?
A common debate within FM discussion forums and support groups is whether male sufferers have it better or worse
than their female counterparts. On the one hand, men may have a more difficult time getting diagnosis or treatment
since FM is generally perceived as a "woman's disease." Balancing this, perhaps, is the widely publicized gender bias
in physician's attitudes toward their patients. A 1999 study in the New England Journal of Medicine found that
women complaining of chest pain are less likely than men to receive important cardiac testing. Research has also
shown that doctors perceive female patients as more likely to make excessive demands on their time, which may be
due to women's real tendency to voice more complaints and ask more questions than men do during a typical visit.
The same study also found that women's complaints were judged more likely to be influenced by emotional factors.
Still, while the loss of function and quality of life imposed by FM is devastating to both men and women, males with
this illness may face some additional burdens. Though gender roles are gradually changing somewhat, men have
long been expected to "feed and protect the family." Societal roles and expectations strongly influence perceptions
of success and self-worth. Many men may base their self-worth on their ability to work, their income potential, or
their employment position. Once afflicted with fibromyalgia, men often can't meet these expectations and must
suffer even greater feelings of failure.
Furthermore, males are socialized from a young age not to reveal or express their feelings and fears. The well-known
fact that men are less likely to seek counseling or attend support groups suggests that men may experience even
greater isolation. One young man with fibromyalgia explains, "I think it is important for people to know how hard it is
for men with FM. Growing up you are taught to be tough, have a job, support a wife and two kids which is very hard
to try to achieve. It is much more difficult for a man to maintain a relationship or explain his condition to friends."
Reaching Out Across Gender Lines
There is support out there for men and women alike. Online support venues may help in bridging the gender gap,
because the relative anonymity of online communication means that an individual's gender is not so readily apparent. In addition, men can more easily connect with other men like them, since they have access to the global community rather than just their local support group, where encountering another male may be less likely.
Most men seem to find that even though online support networks may consist predominantly of women, these
groups are extremely welcoming to members of both genders. Says one male patient, "All the women online readily
accept me and are amazed that I am 'brave' enough to openly speak with them and not be intimidated by being the
only male."
The society we live in tends to associate self-worth with an individual's ability to be "productive." As FM sufferers, our
old expectations simply become unrealistic. Continuing to judge ourselves and our lives by unrealistic standards can
only lead to discouragement and hopelessness. As with any major life challenge, we need to find new measures of
meaning and unique definitions of success. Managing our own and others' expectations is a challenge that everyone, with or without fibromyalgia, must face.
.
Adapted from material compiled by
Dr. Dennis G. Cowan, M.D.
Fibro Joke
A young man, recently diagnosed with Fibro and not taking it very well, was
running up and down the halls in the hospital. As he walked, he would flip up
the hem of him hospital gown and say 'Super sex.' He walked up to a young
woman and flipped his gown at her, and said, 'Super sex.'
The woman sat silently for a moment or two and finally answered, 'I'll take the
Soup.'
Dating back to the
Stone Age, males
were taught to
hunt, feed and
protect the family
from all outside
predators.
However, what if
the ―predator‖ is an
illness from within
which renders the
protector unable to
perform those
duties? Males are
often taught, at a
very young age,
that others will
have certain
expectations from
and for them, roles
to perform and they
are to never
relinquish such
regardless.
Fibro Lads Mag —
Page 8
WHY MEN ARE NEVER DEPRESSED
Men Are Just Happier People-What do you expect from such simple creatures? Your last name stays put.. The garage is all yours. Wedding
plans take care of themselves. Chocolate is just another snack. No periods. You can never be pregnant. No Hot
Flashes.
You can wear a white T-shirt to a water park You can wear NO shirt to a water park. Car mechanics tell you the
truth. The world is your urinal. You never have to drive to another gas station restroom because this one is just
too icky. You don't have to stop and think of which way to turn a nut on a bolt.
Same work, more pay. Wrinkles add character. Wedding dress $5,000 vs. Tux rental-$100.. People never stare
at your chest when you're talking to them. New shoes don't cut, blister, or mangle your feet. One mood all the
time.
Phone conversations are over in 30 seconds flat. You know stuff about tanks. A five-day vacation requires only
one suitcase . You can open all your own jars. You get extra credit for the slightest act of thoughtfulness. If someone forgets to invite you, he or she can still be your friend.
Contrary to popular
belief, Fibromyalgia in
men is also quite
common. Due to the
relatively fewer cases
of men with
Fibromyalgia, as
compared to women,
many people, even
medical practitioners
are led to falsely
believe that the
disease cannot strike
men.
Your underwear is $8.95 for a three-pack. Three pairs of shoes are more than enough. You almost never have
strap problems in public. You are unable to see wrinkles in your clothes. Everything on your face stays its original
color. The same hairstyle lasts for years, maybe decades. You only have to shave your face and neck.
You can play with toys all your life. One wallet and one pair of shoes -- one color for all seasons. You can wear
shorts no matter how your legs look. You can 'do' your nails with a pocket knife. You have freedom of choice
concerning growing a mustache.
You can do Christmas shopping for 25 relatives on December 24 in 25 minutes.
Tips for Men (and women, too)
For all individuals who suffer from fibromyalgia, but especially males, the following guidelines are helpful in managing the impact of chronic illness:
Do not attempt to push yourself beyond your present physical capacities. Accept and work within your
present realm of abilities.
Set immediate, realistic, and obtainable short-term goals which can be achieved on a daily basis.
Talk, talk, talk. Express your feelings and fears--allow others to assist you in seeing yourself from a more
realistic perspective.
Attend area support group meetings. Try to connect with other individuals that share your background or
unique concerns.
Throw out "old lessons" about expectations that one must meet in order to be of value. Write "new lessons"
for your life.
Realize that change does not necessarily produce negative results or consequences. Look for the gains
which can be achieved by and through the changes.
Accept that you may not be as powerless as you feel or fear. While you may not have power over your own
physical abilities now, or how others may perceive you, you always have absolute power and control over
how you view yourself.
How Vitamin B12 is Linked to Fibromyalgia
Nutritionally, there has been a strong link between vitamin B12 deficiency and fibromyalgia with numerous studies confirming the connection. B vitamins help to regulate the biochemical functions discussed earlier and as a
result can reduce stress. You may know that the B vitamins, particularly B3, B6, and B12 are known as stress
vitamins and a deficiency of these vitamins manifest in the same way as many FM symptoms, particularly:
Anxiety Nervousness Depression Exhaustion Insomnia Muscle soreness Numbness
Recommended dosages of B12 vary from individual to individual so it is best to have a doctor get a baseline
B12 measurement in order to find out what the level of deficiency is. Vitamin B12 can be administered by injection, pill or patch and, when taken as part of a holistic therapy for treatment of FM, it can be very effective in
addressing stress-related symptoms.
Page 9
October 2011
Fibromyalgia and Stress
Staying Positive
If you are a man suffering from fibromyalgia, it can be difficult to stay positive and deal with your syndrome. Here are
a few things that you can do to help deal with your fibromyalgia symptoms and get the treatment you deserve.
Keep Track of Your Symptoms:
Make a list of all the symptoms you are suffering from and how they are affecting your daily life. Bring this list to your
health care provider to show him just how much your fibromyalgia is impacting you. This can help you to get a proper
diagnosis and more effective treatments.
Join a Support Group:
Dealing with fibromyalgia on your own is very difficult. Everyone needs a little support now and again, especially if
your are suffering from a chronic illness. Just because you are a man, it doesn't mean that you have to suffer alone.
You deserve quality support like anyone else. There are many support groups designed just for men suffering from
fibromyalgia. Or you can join a group of both female and male sufferers. Contact your health care provider or local
fibromyalgia society for more information.
Set Realistic Goals:
Society often dictates that men set extremely challenging goals for themselves. Men are often expected to care
single-handedly for their partner, children, parents, and friends. This doesn't leave much time for taking care of yourself. Try to set small, attainable goals that will leave you feeling satisfied but not burned out.
How Does Stress Affect Fibromyalgia?
One of the precursors to fibromyalgia is stress. Although we say that stress can be a good thing, the fact for fibromyalgia sufferers is that stress is a trigger for the disorder. Muscle pain can be triggered by stress, as can headaches, nausea, and depression. The hormones that are released with stress interfere with pain receptors and end
up causing serious grief. It works like this:
· When a stressful event occurs the hypothalamus (part of the brain) becomes involved and releases a hormone
called corticotrophin releasing factor (CRF) that protects us from stress by enhancing our mood.
· The CRF then signals the pituitary gland to release another hormone called Adrenocorticotropic hormone corticotrophin (ACHT) which tells the adrenal glands to release cortisol. Cortisol speeds up the metabolism.
· At the same time that all of this is happening, the brain stem and spinal cord signal the adrenal glands to secrete
epinephrine, preparing the body for the flight or fight response. The heart rate, breathing and alertness pick up.
· The signal system goes back to the pituitary gland and the new stress level is assessed. If the stress is reduced the
process stops - otherwise it repeats itself. Extended over a long period of time, the cycle can have a negative effect
upon both mental and physical health.
If you have fibromyalgia, you must learn to deal with stress rather than live with it because it is stress that will exacerbate the symptoms of the condition. Stress causes muscle tightening, an increase in blood pressure and can trigger headaches, depression and other symptoms. Stress also causes extreme fatigue and affects perception of pain,
making FM sufferers more susceptible to pain than people who don't have the condition. It is possible to eliminate
certain stressful triggers with behavior modification and nutritional supplements.
5 Effective Ways to Deal with Stress
Loosening the grip of stress is often easier said than done, usually because people with FM tend to put themselves
and their self-care at the bottom on the list rather than at the top. Some simple lifestyle changes can make stress
levels subside considerably.
1. Biofeedback therapy can teach a person how to control stress in their lives.
2. Exercise promotes good health and releases endorphins, the body's natural pain killers and mood enhancers.
3. Ensuring good sleep is particularly important - even though sleeplessness is common with FM.
4. Relaxation therapy calms the body and the mind and can be very effective.
5. A warm bath or sitting in a hot tub or steam room decreases the secretion of stress hormones and raises the
levels of endorphins. An added bonus is that the moist heat relaxes muscles as well
As with the females
affected by Fibro, many
individuals can
experience some change
in weight as they no
longer possess the energy
to engage in physical
activities or exercise. The
loss of their physique is
often times extremely
difficult to face. Many
such individuals may fear
rejection by their loved
one due to their perceived
“non-attractiveness.” In
such cases, open
communication with the
loved one is often
recommended.
Fibro Lads Mag —
Page 10
Not Lazy--Not Crazy By: Russell Brooks
Reprinted from FMOnline
I'm a 44-year-old man, first diagnosed with fibromyalgia in 1988. While fibromyalgia presents a litany of problems for
all of us affected, as a man, the worst thing about it for me has been the criticisms I've received for "spending so
much time in bed."
"What's wrong with him?" has been a chant for years.
"Fibromyalgia," they say, "what's that?"
"Are there any tests?"
"Surely it's all in his head!"
Heretofore, for me, fibromyalgia has not been accepted as an excuse to be a bedridden man.
To all the nay-sayers, especially those in the medical community, I'd just like to say that at 44 years old, bedridden is
not what I want to be! There are entirely too many wonderful activities I'd like to participate in. More often than not, I
can't get out of bed—I just can't. I'm either in too much pain, or totally exhausted! So, outside of essential activities
that I must drag myself to, there are few other activities I can avail myself of. In many ways, this is not living—not living
at all.
After suffering seemingly alone for the last 18 years, it appears that things are changing fast. Just the fact that a
National Fibromyalgia Association now exists seems to have given pause to the nay-sayers. Having the Fibromyalgia
AWARE magazine on the coffee table seems to have provided further pause. I'm confident that through NFA's efforts,
the exact nature of fibromyalgia will soon be revealed—the marker(s) will be found, and we suffers will be vindicated. I
look forward to being up and around again, operating at the same frenetic pace that was once my hallmark.
Fibromyalgia symptoms are the antithesis of so many masculine attributes, strength, stamina, etc. Without strength
and stamina, it's been my experience that I'm seen of less than a man. I look forward to recapturing my strength and
stamina again. Through NFA's great efforts, I'm confident that I will. In addition to all the wonderful things it's doing,
NFA will, at the end of the day, help me once again be seen as a respectable man, not lazy, not crazy—just a man with
a real illness who wants to get better.
Fibromyalgia and Men by Annie
For many, a male
may base his selfworth on his
ability to perform,
to succeed and to
provide for the
family. Being
afflicted with
fibro, the male
cannot meet such
self-imposed and
societal
expectations.
Fibromyalgia breaks apart lives. This we know. The lives of men with Fibromyalgia are affected in a different, but
equally severe manner when compared to women with the syndrome. As an illness that affects less than 10% of men
in United States, Fibromyalgia leaves many males feeling especially inadequate about the state of their body and their
role in the world. Women can at least find a support group of other female sufferers (such as the ―spoonies‖ on Twitter
[which includes men but they are scarce!]), while men (including several in my family), get pushed to the side, as they
feel like they don’t belong, and never find reasonable treatment for their illness.
More women than men have Fibromyalgia, as having estrogen reduces the pain threshold (according to WebMD). But
men need to realize that this illness will benefit from their support. There is still a slanted bias that this illness is based
on mental health, which is partially true as it is neurochemical, but not necessarily associated with hysteria (at least
unwarranted hysteria haha). If more men took an active role in talking about this illness and looking for help, we could
likely have more research take place in order to bring in increasingly useful treatments.
It is likely many men are undiagnosed, as they are less apt to go to a doctor when they feel unwell. However, they are
more likely to develop suicidal tendencies (sadly, a common occurrence with this illness). It is however, much more
rare for men to get Fibromyalgia at the same severity seen in some women (due again to different hormonal and neurochemical levels).
If you are a man with Fibromyalgia, I recommend a forum like www.menwithfibro.com. The understanding that one can
get from meeting fellow people with the same symptoms is amazing. The National Fibromyalgia Association also has a
section of information for men with Fibromyalgia, found here: http://www.fmaware.org/site/PageServer?
pagename=topics_menWithFM. There are some wonderful testimonials.
Men with this illness – know that the females affected are here for you. Support can be found all around. One just has
to take the plunge.
Bits & Pieces
For many, a male may base his self-worth on For all, and especially males, afflicted with Fibro/CFS, the following
suggestions should be considered:
1. Do not attempt to push yourself beyond your present physical capacities. Accept and work within your present
realm of abilities.
2. Set immediate, realistic and obtainable short-term goals. Goals which can be achieved on a daily basis.
3. Talk, talk, talk. Express your feelings and fears — not for the purpose of having others refute your beliefs, but
rather to assist you in seeing yourself in a more realistic perspective.
4. Attend area support group meetings. Attend or develop a support group specifically designed to address the
unique issues directly related to males afflicted with Fibro/CFS.
5. Throw out “old lessons” of male roles: that is, roles which a male should or must meet in order to be of any value.
Write “new lessons” for your individual life.
6. Realize that change does not necessarily produce negative results or consequences. Look for the gains which can
be achieved by and through the changes.
7. Accept that you may not be as powerless as you feel or fear. While you may not have power over your own physical abilities now, or how others may perceive you, you always have absolute power and control over how you view
yourself.
October 2011
Page 11
Websites for Men with Fibromyalgia
"FibroMen Support Group"
http://health.groups.yahoo.com/group/FibroMenSupportGroup/
"Fibromyalgia In Men"
www.geocities.com/cfsdays/fmmen.htm
"Info for Men" , Portsmouth, Virginia, Fibromyalgia/CFIDS Support Group
http://pages.ivillage.com/kgil526693/portsmouthva_fms_cfidssupportgroup/id19.html
"It's a Guy Thing: Men with Fibromyalgia"
www.immunesupport.com/library/showarticle.cfm/ID/3466/e/1/T/CFIDS_FM/
"Managing My Fibromyalgia...Sharing Tips That May Help Fellow Sufferers"
www.managing-my-fibromyalgia.com
"Men & Fibromyalgia" , Fibromyalgia Support of Northern Ireland
www.fmsni.org.uk/men&FMS.html
"Men's Area" , Fibromyalgia And Caring Friends
http://members.tripod.com/~treasures/fmsmenarea.html
"Men's Corner", Our FM/CFS World, Inc.
www.ourfm-cfidsworld.org/html/men_s_corner.html
"The Men's Health Network ", A nonprofit organization of doctors, researchers, public health workers
and other health professionals.
www.menshealthnetwork.org
"Men Surviving FMS"
www.myfibrosite.com/users/dwaynebright/index_1.html
"Men With Fibromyalgia"
www.menwithfibro.com/home.html
"Men With Fibromyalgia", Fibromyalgia Syndrome Resource
www.fibromyalgia-symptoms.org/fibromyalgia_relieve.html
"Men With Fibromyalgia", Kealalaina's Fibromyalgia Information And Links For Patients And Family
www.fibrotalk.org/pages/fibromyalgia/men_with_fibromyalgia/
"Peter's Fibromyalgia & Personal Info Website"
www.merlinean.com
"Real Men, Real Depression" , NIH's National Institute of Mental Health
http://menanddepression.nimh.nih.gov/
"Rise Above!" , Mailing list co-founded by Donald "Skull" Powell and Bob Hall
http://www.menwithfibro.com/riseabove/rise_above_.html
Fibromyalgia: A Man's Perspective - Experiencing the Body as an Obstruction
Source: Meaning of Men's Lived Experiences of Living with Pain of Fibromyalgia Type, by Margareta Paulson, Ella Danielson, and Siv
Living with a reluctant body:
As a group, the men tended to feel that their body was sluggish as well as constantly achy, painful, and/or stiff. Of
great concern was that they were no longer able to participate in the same level of activities as they had before, and
they reported feeling restless and anxious. Most of the sample, who were unable to work full-time (if at all), felt especially anxious about finances. One man stated, "Sometimes I think about working full-time, but hell, it's not possible".
Living day by day with a body in pain:
The unpredictability of FM was a great frustration as it made the planning of daily life nearly impossible. Respondents reported that they now lived life one day at a time and sometimes minute-by-minute. During periods of severe
pain, the men indicated that even the simplest tasks were difficult, and as a result they tended to avoid social contact--even if it was just answering the telephone or the door.
Being a Different Man
Not being the same man as before: The men had typically been very active before getting ill and had often been
viewed by their peers as "cheerful and kind". After developing FM, however, they reported feeling "emptiness and
shyness". Illness-related changes that caused them particular sadness were: difficulties concentrating on even the
simplest tasks, meaningless (insulting) tasks that were given to those able to return to work, and difficulty controlling
their temper during times of increased pain. Although the men were bothered early on by what other people thought
of them and their situation, by the time of the interview they were much less concerned about others' demands on
them.
Not being really understood:
Although the men acknowledged that their friends and family members believed that they were experiencing pain,
they felt that this was not the same thing as understanding what they were going through. What gave them particular
grief, however, was knowing that their young children could not understand their illness and the reason why they
could not play rough or noisy games with them.
Striving to Endure
Living as normally as possible:
While the men felt it was important to maintain social contact with friends and relatives when symptoms weren't too
severe, they were reluctant to allow others to see them ill and worried that they might be called "whiners". Stoic
fathers or grandfathers who had "cheerfully" undergone suffering during their lives were often role models for the
respondents. The men reported that they typically accompanied their families on holiday outings/trips, even when
they knew it would be "torture" for them.
Searching for alleviation:
The men felt they would be more cheerful and productive if only they could decrease their level of pain. They also felt
that when pain was at its worst, they needed to be alone. Those who had been granted a disability pension described "feelings of finally gaining mental peace".
Having to nurture hope:
While the men as a group were pessimistic about any chance of a life without pain, they did admit that they hoped
their pain would not worsen. They spoke of the "necessity of never losing courage".
Often times, it is not
uncommon for the
individual to attempt to
push or fight to keep
himself functioning at his
pre-illness level. The goal
of such behaviours may be
to escape from the
feelings of being a failure
and of “letting others
down.
PCS
Helpline Number: 0844 8872359
11am—5pm
E-mail: fibrowsm@gmail.com
Website: www.fms-wsm.org
This would be a good place to insert a short paragraph about your organization. It might include the
purpose of the organization, its mission, founding
Primary Business Address
date, and a brief history. You could also include a
Your Address Line 2
brief list of the types of products, services, or proYour Address Line 3
Men
Confessing
grams your organization offers, the geographic area
Your Address Line 4
covered (for example, western U.S. or European marand ado,
profile
of copthe types of customers or memMen face many of the same challenges askets),
women
both
Phone: 555-555-5555
bers
served.
ing Fax:
with
the
pain
itself
as
well
as
the
problems
pain
brings
to
your
555-555-5555
work, relationships and past-times.
It would also be useful to include a contact name for
E-mail: someone@example.com
readers who want more information about the organi-
For some men - and while this may be a stereotype,
there’s a lot
zation.
of truth to it - there are some things that tend to be harder:
Your business tag line here.
* sharing feelings
* admitting to being scared or unsure
* needing assistance
* not being able to do so much anymore
* not being able to work
We’re on the Web!
* admitting to having trouble coping
example.com
* saying pain hurts
Men with FMS, Antidepressants and Sexual Issues
Some of the men who responded spoke about concerns they had in their sexual relationships.
Antidepressant medications can cause low sex drive in both sexes and can cause men to be nonejaculatory and women non-orgasmic. This was a concern for some of the men, but some were
looking for ways to improve this side effect by trying different medications.
Some had taken matters into their own hands and took "drug holidays" a day or two before intimacy, and that seemed to counteract this nasty side effect. Some men mentioned how they had to
be creative in finding positions that did not further stress an already painful body. These situations
call for communication between both partners, and some of the men mentioned that this subject
was an extremely difficult one to talk about at times. Several men mentioned the constant love
and devotion of their partners as being a major factor that keeps them going when trying to maintain this important aspect of their relationships.
I was honored by this man's openness:
"There is another problem that I've never talked at length about with anyone before - Sexual dysfunction. There is still a drive there. It just seems to be clouded over by this disease. I think it might
have something to do with the constant pain I'm in, at least in part. My poor wife has brought up
the subject many times. I can't seem to do anything but clam up and I usually can talk about most
any subject. I can't explain this reaction. I don't like it; it just is. Maybe it has something to do with
a feeling of failure; I don't know. I believe this, coupled with moodswings, etc. would have meant
the end of our marriage if we didn't have a deep commitment and love for each other that comes
from our love and faith in Jesus Christ. It goes far beyond a physical attraction."
Another man stated this about antidepressants:
"My rheumie put me on Elavil for sleeping first, and there went my sex life - no desire at all. A
friend that worked in a hospital pharmacy told me about trazodone. When I mentioned trazodone
to my rheumie, he grinned and said 'that causes erections in males'. So, if that could be called a
plus...the problem now is the positions available to my wife and I. Most of them cause pain."
Monthly Meetings
Meetings on the 2nd
Monday of each month
Between 2pm—4pm
The Purple Sheep Centre
Hughenden Road
Milton
WSM