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Welcome to The Brand New Home of
Portsmouth Va. Fibromyalgia/CFIDS Support Group
MEN CAN HAVE FIBROMYALGIA AND CFIDS TOO!!!
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Men and Fibromyalgia
By Bob Hall
Michael J. Fox became a "one of a kind" type of guy because he stepped forward, and let the world know about his disease. He gained national attention, and received national compassion and sympathy because of his plight with disease. I applaud him for his courage to "take a stand" and bring awareness to a disease, and to get attention for Parkinson's and much needed research. But, he is a celebrity, and his job was fairly easy.
What about Jim? Jim has fibromyalgia. He is not famous, and not many people will know anything about the disease he struggles with on a day-to-day basis. Jim lives in constant pain, he fears losing his wife because he is no longer capable of "being a man." He fears his grandchildren fading away from him, because "Grandpa" can't do "Grandpa" things any more. His friends don't call anymore because he has been "sick" one time too many.
What about Chuck? Chuck has fibromyalgia. He is not famous, and not many people will know of his disease either. Chuck's wife has already left him. His doctors still think it is all in his head, and there is really nothing wrong with him. He suffered from a car accident, and as a result he ended up with a diagnosis of fibromyalgia. The "invisible disease." One of his doctors treats him like he is nothing more than a drug addict just wanting drugs. Yes, he does want drugs. He wants treatment for his chronic pain.
What about Dave? Dave has fibromyalgia too. Dave is one of those that people will never know he has fibromyalgia. Dave has trouble showing his pain, his feelings, and is afraid people will shun him because of his disease. He is afraid to let anyone know he is suffering. Dave is known to do things, to go overboard, and end up in bed for days, just to keep anyone from knowing he is in pain. Dave has a lot of anger, a lot of frustration, and a lot of pain.
What about Joe? Joe suffers from fibromyalgia. Joe is a trooper when it comes to his pain and disease. He never gives up, encourages others with the disease, and rarely displays a bad attitude. He has his good days, and his bad days, but is ever hopeful for a cure some day. He has a supportive spouse, and a close-knit family. He did however, lose his job due to the disease, and had to go on disability. Joe is active in his local support group, and is known to help others cope with the disease. Joe is the kind of person you would like to know even if you didn't have fibromyalgia.
What about Greg? Greg has fibromyalgia. His is so severe he is confined to a wheelchair, and rarely gets out of his home. He has very little quality life, and not much to look forward to anymore, just the chronic pain. He suffers now from panic attacks, from irritable bowel syndrome, chronic sleeping disorders, shortness of breath, and several other "cousins" of fibromyalgia. He depends on others to help him on a day-to-day basis. Most of his friends are on the internet, and talk to him from afar, only when he feels up to getting on the computer and chatting.
What about Bill? Bill has fibromyalgia. Bill is still trying to work and hold down a full time job. He is starting to have to call in sick more and more. His boss is putting more and more pressure on him to be on time, and not to call in sick. He really can't help it, as there are days when he just cannot work. His medical bills are mounting, his financial condition is falling, and his family is starting to suffer from his illness. His doctor says he needs to reduce the amount of stress, as stress makes fibromyalgia worse. On his way out of the doctors’ office, the receptionist tells him they need a payment. This is a vicious circle. His medication bills are growing daily, along with other financial burdens.
You have just been introduced to a few of the men who frequent the menwithfibro.com website. The names have been changed, but they are all there. There isn't much on the Internet about men dealing with fibromyalgia, and that was the reason www.menwithfibro.com began. It began as a central point for men to come, to share, to learn, and to grow with the disease. Traditionally, more women have the disease than men, but the number of men with fibromyalgia is growing steadily. Part of the reason more men are not diagnosed is that men are just plain stubborn sometimes. And when it comes to going to the doctor, they are VERY stubborn as a general rule.
Men are raised to believe that men don’t cry. They are told to "shake it off” and to "take it like a man." Men fix things, men are the hunters, men are supposed to be the breadwinners, the head of the household. Men are inundated with these concepts from a very early age. Showing pain is showing weakness to so many men. Fibromyalgia does not shake off. Fibromyalgia does not give up. It does not stop for anyone, or anything.
Hopefully the www.menwithfibro.com website will be stomping grounds for some of the men with fibro, and for women as well. The site is not just for men, but devoted primarily to men and how they choose to deal with fibromyalgia. Anyone is welcome to the site.
The site has a forum and the response there has been well received. Dr. Michael McNett from the Paragon Clinic in Chicago hosts one of the forums and discusses fibromyalgia openly. He has been a great asset and has been well received by all of the people coming to the sites. There is also a chat program available on the site.
The response to the website has been very good. Many say it is something that has been needed for a long time. Maybe it will be like a "Cheers" on the internet – a stopping place for men and women to grow as individuals, and share one with another. That is our goal and hope.
When a debilitating chronic illness strikes, every individual, including those around the person, is effected. Each individual is effected differently based upon the role which they serve in the family and the expectations they place upon themselves as well as the expectations which others may place upon them. Such a case is true with Chronic Fatigue Syndrome.
Chronic Fatigue Syndrome (CFS) is an illness of unknown origin whose primary symptom is of extreme fatigue and flu-like symptoms. As published in the ANNALS OF INTERNAL MEDICINE in 1988, the Centers for Disease Control has developed a case definition for Chronic Fatigue Syndrome which includes:
I. New onset of persistent or relapsing fatigue, with at least 50% reduction of activity level for at least 6 months.
II. Exclusion of other conditions through History, Physical examination and Laboratory Examination.
III. 6 of the following 11 symptoms:
Mild fever
Sore throat
Painful lymph nodes
Muscle weakness
Muscle pain
Prolonged fatigue after exercise
Headaches
Joint pain
Neuropsychologic complaints
Sleep disturbance
Acute onset of symptoms
And 2 of 3 signs on physical examination:
Low grade fever
Throat inflammation
Palpable or tender lymph nodes
IV. OR 8 of the 11 symptoms without physical signs.
Chronic Fatigue Syndrome attacks all individuals regardless of race, gender, age and socio-economic status. It "robs" an individual of the opportunity to participate in generally perceived "normal" productive daily activities of work and play. While clearly all of the individuals afflicted are devastated by such, with our present culture, males facing this illness may find some additional burdens.
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 many, a male may base his self-worth on his ability to perform, to succeed and to provide for the family. Being afflicted with CFS, the male cannot meet such self-imposed and societal expectations. 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 behaviors may be to escape from the feelings of being a failure and of "letting others down."
However, pushing oneself 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.
Staring at an illness which impedes or blocks the ability to perform at even a minimal degree of the pre-illness capacity makes this task even more difficult. It is essential that all individuals with CFS, and especially males, must confront their own expectations of themselves. The individual must question if such are truly realistic and accept their individual strengths and limitations. Having such an illness does not render the male "less masculine" or lower his value to the family or society. It is imperative that each individual must develop the mindset of setting realistic goals within the individual's PRESENT abilities and to stick with such regardless of the pressure which might be received.
Males have far too often attributed self-worth with their income potential or employment position. As the illness encompasses the individual's life, the capacity to be gainfully employed and to use the energy to "climb the corporate ladder" becomes an even greater and burdensome task. Many will see themselves gradually falling behind their peers up the ladder of success. They may hear of others successes which further deepens the undercurrent of their own present shortcomings. Furthermore, as they are unable to perform the tasks within the workforce, the likelihood of receiving supplemental income through disability can become even more possible.
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. The family may be forced to make dramatic changes. Often times, males feel powerless to stop the negative changes, let alone view themselves as the cause of such. The "demons" in their own head may begin to surface as well as fearing others perceptions as the effects of the illness begins to take its toll. "Old lessons" must be rewritten or discarded. New lessons of each individual pulling a "fair share" must emerge. Change need not necessarily be negative. One must remember that no matter what happens, others will continue to think whatever they are going to think. Facing and confronting others expectations is a task which everyone, with or without CFS, must undertake.
As with the females affected by CFS, 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.
For the most part, in spite of recent movements, the societal view that males should not express or verbalize their fears and feelings continues to exist. It is almost as if many males fear becoming "weak" to express their feelings, fears and disappointments. It is well known that fewer males tend to seek counseling or attend area support groups. Hopefully, as our society continues to change, males will allow themselves this avenue of assistance. It is only through the verbalization of the fears and feelings that any individual can face and overcome them. Without such, the feelings and fears tend to grow and grow within their own being.
An individual's ability to be "productive" in life has far too long been correlated with self-worth. The basis for this standard of "productivity" is generally based upon the individual's pre-illness capacity or level of functioning. For all individuals getting older in years, this is an unrealistic standard as we all lose abilities with age. Such is especially true for those afflicted with CFS. When the individual attempts to continue judging their life by this unrealistic standard, secondary depression will develop.
*** For all, and especially males, afflicted with Chronic Fatigue Syndrome, the following suggestions should be considered:
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 -- not for the purpose of having others refute your beliefs, but rather to assist you in seeing yourself in a more realistic perspective.
Attend area support group meetings. Attend or develop a support group specifially designed to address the unique issues directly related to males afflicted with CFS.
Throw out "old lessons" of roles which a male should or must meet in order to be of any value. Write "new lessons" for your individual 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.
Information for this text is from the brocure, "Chronic Fatigue Syndrome In Men." Material compiled by:
Dr. Dennis G. Cowan, M.D.
17203 E. 23rd Street
Suite 200
Independence, Missouri 64057
This text prepared and provided by:
National Chronic Fatigue Syndrome
and Fibromyalgia Association
P.O. Box 18426
Kansas City, MO, USA 64133
(816) 313-2000
A few Symptoms and Concerns Shared by Men with FMS/CFIDS
(If you have "others" you would like to share, please send them to ME , and I will add those also)
YOU ARE NOT ALONE!!! YOU ARE NOT CRAZY!!! THERE IS HOPE!!!
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The Portsmouth Virginia Fibromyalgia/Chronic Fatigue Immune Dysfunction Syndromes Support Group meets at:
Bon Secours Maryview Medical Center (Hospital)
3636 High Street - Portsmouth - 23707
in conference room #B the 2nd Monday of every month from 6:30 til 8:30 pm, and the 4th Saturday of every month from 1:00 til 3:00 pm in Conference Room #A or #C.
Only "exceptions" are, when the "dates" fall on Major Holidays or due to very inclement weather. There should be a schedule of the Meeting Dates on the Calender and Events Page. If you are not sure, please feel free to call Cindy or Karen.
We have a variety of speakers for nearly every night time meeting. Please feel free to come join us whether you are a fellow sufferer or someone that is just interested in learning more about These Illnesses
For further info you can call Cindy at 757-399-2426 and Karen at 757-483-3613 or email (Karen) kgil526693@aol.com
