Wednesday, September 3, 2008

Fibromyalgia: A Man's Perspective

I recently read an article entitled "Fibromyalgia: A Man's Perspective". It comes from a website quoting Fibromyalgia Frontiers© 2002 [Volume 10, Number 2]. It's an interesting read and as a man with FMS, I wanted to post it here for other guys to read.

Fibromyalgia: A Man's Perspective

A new study performed by researchers from a Swedish hospital of rheumatology offers new insights on how men experience fibromyalgia. Fourteen men who were either married or living with a female partner were encouraged to tell their FM story. Clarifications were elicited as needed. Transcripts of the 14 interviews were reviewed extensively by the researchers, and a structural analysis performed which divided the interviews into meaningful units. Three themes and seven sub-themes were identified and are summarized below:

Experiencing the Body as an Obstruction

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".

Meaning of Men's Lived Experiences of Living with Pain of Fibromyalgia Type, by Margareta Paulson, Ella Danielson, and Siv (Source: Struggling for a Tolerable Existence: The Soderberg, Qualitative Health Research, Vol. 12, No. 2, February 2002, 238-249.)

Dr. Mark Pellegrino has added via his book, Inside Fibromyalgia With Mark Pellegrino, M.D., Anadem Publishing 2001, the following insights. This book may be purchased by visiting Anadem Publishing at their Website:

  • The two main risk factors for men are hereditary and trauma. Men with a parent or parents with fibromyalgia are at greater risk. Because men are less likely to seek medical attention for pain problems, they who finally present themselves to a doctor and are diagnosed with fibromyalgia usually have a more severe form.

  • On a men's exam there is nothing unique when compared to a woman. Outside of men having much lower estrogen levels, their tests give the same results.

  • Many men admit to strained interpersonal and intimate relationships. Men are very apt to physically express [yelling, anger, irritability, throwing things, etc.] their frustration with constant pain.

  • Many job skills require physical abilities, and if fibromyalgia interferes, job skills can not be performed forcing a man to highlight his inabilities and failures, instead of his abilities. This leads men to needing to pursue disability, because is usually is not possible or practical to simply find another job.

  • It can be more challenging for men to get out of the disabled or victim mode once they have entered it.

  • Affected men represent the "silent minority" in fibromyalgia.

Some of Mark Pellegrino's articles can be found and books also purchased through the "National Fibromyalgia Partnership, Inc".

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