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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10 responses to this post.

  1. Posted by George on August 26, 2010 at 4:57 PM

    Oops
    Part of my message got cut out in places when I pasted them in. What I meant to say is that I am in contact with some of the key researchers in the ongoing fight with ME/CFS and that some of the information can be found at the websites listed.

    Enjoyed your posts

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    • Hi George,
      Thanks for your comment. I’m sorry you suffer too. I’ll definitely check out the links you shared. I was hoping this post would get this kind of feedback. I need to update my knowledge. I’m exhausted as I write but wanted to respond. Thank you for visiting my blog!
      Michelle.

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  2. Posted by George on August 26, 2010 at 4:53 PM

    I am in your situation is it Fibromyalgia or ME/CFS as both seem to identical to me although the exhaustion has taken over whereas the pain can be managed with Neurotin. They may be subsets of one another. I am top with the key researchers in the fight on ME/CFS the recent Dr. Alter paper is a boost for those suffering from chronic illness. I good explanation of the impact Dr. Alter’s paper can found here :
    http://forums.aboutmecfs.org/content.php?213-Four-Viruses-The-Alter-XMRV-Paper-Arrives

    and here:
    http://www.cfscentral.com/2010/08/fdanihharvard-xmrv-study-same-thing.html

    and here
    http://blogs.wsj.com/health/

    Liked by 1 person

    Reply

  3. Full name of article: “Central sensitivity syndromes: a new paradigm and group nosology for fibromyalgia and overlapping conditions, and the related issue of disease versus illness.”

    Yunus MB.

    http://www.ncbi.nlm.nih.gov/pubmed/18191990

    A more recent one in the same category: “Fibromyalgia syndrome: a discussion of the syndrome and pharmacotherapy.”

    http://www.ncbi.nlm.nih.gov/pubmed/20562596

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  4. Hi sweetie! Boy, we must be on the same wavelength! Look at what I wrote also!! I’m going to read more about the Central Sensitivity Syndrome. I like that!! Hope you are coping and having a better day.
    xoxo
    Rosemary

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    • Hi Rose!
      Thanks. Actually writing has caused pain so I must stop 😦 but I’m hanging in there. Kind of sickly.
      I will try to find my way over to your blog today.

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      • I’m starting to come out of a fog a little bit and I re-read this article because it makes so much sense now. I think I must have a combination because the fatigue is overwhelming right now. I can’t seem to stay up very long. I understand about doctor’s mistakes. Because I liked the doctor I didn’t sue either. I loved the poem as well. Don’t worry about the language!! Have a blessed day sweetie. I’m off to the doctor for medication.

        xoxo
        Rose

        Liked by 1 person

        Reply

        • Hi Rose,
          I’m sorry about the fatigue. I know how it feels to not stay up long, except at night sometimes. You’d think as tired as we are we would sleep like babies… not so though. Thanks for reading the poem.
          I hope your visit goes well and that you have a blessed day also.

          ((hugs))

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  5. […] The rest is here: Perspectives on fibromyalgia « Dogkisses's Blog […]

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  6. […] Original post: Perspectives on fibromyalgia « Dogkisses's Blog […]

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