Posts Tagged ‘stigma of invisible illnesses’

Perspectives on fibromyalgia

Центральная нервная система-Central nervous system

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The first thing that comes to mind when I think about fibromyalgia is that it’s been a long road of pain and fatigue that gradually worsened over time.  I don’t fully understand when I hear that it isn’t a progressive illness or disease, since over the past seven years I’ve gone from saying ouch while bending over in the garden, to having many days (possibly years worth) of being completely debilitated by pain and fatigue.

Is it a disease or a syndrome?  Illness, disease or syndrome?  I think it may be all of those.

Fibromyalgia is a pain filled life changing experience.

Fibromyalgia is often misunderstood, stigmatized and people who suffer from it are wrongly judged.

Sometimes I feel like I understand what I’ve learned about fibromyalgia, particularly that it’s a central nervous system disorder, and other times, when I’m deep in the throws of severe pain or terrible fatigue, I question what I thought I understood.  During these times, I wonder if the doctors have missed a rare disorder or another disease more understood than fibromyalgia is.

Some days I fully accept it and other days I wonder if it even exist, and again, wonder if the doctors have simply missed something that would clearly explain all the pain, the fatigue and the myriad of other symptoms I have.

I’m afraid of fibromyalgia.  Not all the time but some of the time.  I’m afraid of getting older and adding an aging body to an already painful weak one.

I believe we are human.  I do not believe that pain, sickness, illness and diseases are a result of karma, sin or character issues.  I believe humans are susceptible to diseases because we are human.

Disease can be caused by chronic stress but this cause doesn’t make it any less real.

I believe fibromyalgia is a medical entity that causes great suffering and drastically changes lives.

Fibromyalgia is not the same for everyone.

Treatment for fibromyalgia is not the same for everyone.

The view that fibromyalgia is a central nervous system disorder, Central Sensitivity Syndrome, (CSS), makes the most sense to me.

The first time I heard about CSS was when I met with a Rheumatologist, Dr. John B. Winfield at UNC-Hospitals in Chapel Hill, North Carolina.  I had an appointment with him the day before he left his position and moved to the mountains.  I wouldn’t have been able to see him again anyway because UNC-Hospitals would not allow him to see a patient for fibromyalgia more than once.  (Politics…)  I don’t think this helped him help his patients.

As I write, UNC-Hospitals doesn’t have a doctor who specifically treats fibromyalgia.  They have the department of Rheumatology, but they refer fibromyalgia patients to a family physician who often refers the patient to a Rheumatologist.

My visit with Dr. John B. Winfield remains one of the best doctor’s visits I’ve ever had.  I spent over two hours with Dr. Winfield that day.  He told me I would see his research in a few years but at the time that seemed like forever.  Now I see his research.

Finally, I hear doctors, or at least mine, talk about CSS.  Finally.

“Central sensitivity syndromes: a new paradigm…” Yunus MB, (PubMed.gov)

Excerpts from an abstract summary of the article (above link) —

“Such terms as “medically unexplained symptoms,” “somatization,” “somatization disorder,” and “functional somatic syndromes” in the context of CSS should be abandoned. Given current scientific knowledge, the concept of disease-illness dualism has no rational basis and impedes proper patient-physician communication, resulting in poor patient care.

–“The disease-illness, as well as organic/non-organic dichotomy, should be rejected.”

After having caught up a bit on the latest articles, which I find to be tiring to my brain, I’m somewhat confused.

I understand that  Chronic Fatigue Syndrome is part of fibromyalgia.  I guess you can have one without the other, but I’m not sure.  I was diagnosed with CFS before fibromyalgia.

I had Lyme’s Disease in 2003, which caused my joints to protrude and hurt very badly.  They got better except bending over never did stop hurting.

I had Rocky Mountain Spotted Fever in 2005.  I didn’t get treatment for six or seven weeks. My wrists joints were protruding again.  I was severely ill. I was finally diagnosed and took Doxycycline.

The fatigue continued.  I began to have severe low back pain.  Neither went away.  I was referred to immunologists.  They said I had Post Infectious Disease Syndrome and wrote on my records that I have CFS as a result of RMSF.  They said the disease stayed in my system so long that it caused a systemic infection that could last, possibly, the rest of my life.

I saw Dr. John B. Winfield the next summer, in June, 2006, who diagnosed me with Classic Fibromyalgia.

He spent a lot of time with me, several hours, educating me about fibromyalgia and talking with me about how to live with the stigma around the diagnosis, particularly as it is considered an invisible illness.

I don’t know where to draw the line, or if there is one, between fibromyalgia and Chronic Fatigue Syndrome.

I have all the symptoms of fibromyalgia and all the symptoms of Chronic Fagtigue Syndrome.

I could benefit from another two hour visit with Dr. Winfield.  He did mention that me doing things like taking trips to the mountains, along with a few other activities I shared with him that I enjoy doing, would be good for fibromyalgia.

Update on August, 27, 2010 —

Please see the comments on this post for several excellent links (from George) for recent new findings/ research about Chronic Fatigue Syndrome.

Thank you George.







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From the desk of the disabled

the disabled=

Dan was funny and talented.  He wrote poems, songs, played the guitar and sang, sometimes performing  for various coffee houses or one of the locally somewhat underground etched out gathering places downtown.

Even with a few beers in him he remained smart enough to help  my teenage son with his algebra homework–- something I was not equipped to do.   He was also tall and handsome.  Everyone liked him.  They called him, simply, Big Dan.  He made us all laugh.  He was single and so was I.  We were the same age.  Needless to say, Dan and I had a passionate, though short-lived love affair.  He passion to party didn’t mix well with my responsibilities raising a teenager.

Dan and I often met in the center of downtown where the local teenagers, tourists and foot-travelers were having fun or stopping for a rest.  This was the downtown Asheville we knew before the 100 year lease on the Vance Monument ran out, leaving its reasons for existing to be annihilated by the local powers that be.

Our cultural downtown oasis would soon be over but that summer, before it all changed, Dan and I were wonderful lovers.

I often sat in the sun warmed grass around the monument while Dan played his guitar, an action he would later purposefully get himself a city citation for, due to his not having a license to play an instrument downtown.  He thought this was funny and looked forward to his court date.

“Have you applied for disability benefits?” he asked me one day.

I was taken aback.  “What for?” I responded.  The word disabled conjured up the image of my father.  He had been disabled. I wasn’t like my father I thought.

“How long have you been out of work?”  he continued.  Dan worked at a group home and was educated on the subject of disability.

“It’s been about three years,” I answered.  Hearing myself say three years did sound like a long time.

Looking surprised he said, “Depression is a disability and you can get help because of it.”

I remember that day.  I remember the grass.  I can still remember how it felt to sit there with Dan.  It felt really good.

I would slowly begin to realize many things about my life; the history of it; how and why it played out the way it had — and myself — I would in some ways meet myself for the first time in my mid-thirties.

It would be six months after that sunny warm day with Dan that I walked into the Social Security Administration’s local office.

“I have an appointment,” I said to the clerk.

“What are you here for today Mam?” she asked.

I leaned forward a little, self-consciously lowering my voice.  “I’m here to apply for disability benefits.”

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