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Fibromyalgia – not so long ago, the “f” word

May 12, 2012

The Picture of Health with ME/CFS

A few days ago, I received a newsletter in my email that informed me that today, May 12, is National Fibromyalgia  Awareness Day. Who petitions for or decides on something like that? The federal government? The CDC? A board of physicians (I doubt it)? One physician (maybe)? Hallmark? Anyone? Anyone? Bueller?

I suppose “awareness day” is quite different than “national holiday” and I wonder how many “awareness” days fill our calendars and to what gain.

**** Pause. When I sat to write this post, I didn’t know the opening would take this tone. So, I’m sitting still thinking, “Yikes, where did THAT come from?” ****

Maybe from here. Ten years ago I woke from a simple 45 minute surgery a changed person (I now presume the anesthesia was the culprit). Over the next four years my life was stripped of :
– sharp cognitive function
– physical abilities I had enjoyed, without thought, for years (gardening, power walking, yoga)
– my job, as my energy was unpredictable (and could go missing for weeks) and my cognitive function was dismal
– my home, which I could no longer care for and the stairs of which I could no longer climb
– my 26-year marriage (my former husband surmises our marriage ended because I now start my day so late – the crack of noon to be precise, quite typical of a person with this condition)

Until the day of that surgery, anyone who knew me would have characterized me as a “type A” personality. I thought fast, I talked fast, I moved fast. I got a lot done in a day.

After the surgery, I couldn’t remember the names of dear friends, I had the speed of a slug, I had the energy of….whatever has NO energy. It took me nearly two hours to shower, since I had to rest so often throughout the process (the washing process…the hair drying process…the dressing process) – things I had never thought about as “processes” in my prior healthy life.

What frustrated me the most was that my legs had gone dumb and heavy – not weight-heavy (to the contrary, I was losing what precious little weight I could afford to lose), but unresponsive heavy. I felt as if I were dragging them around rather than that they carried me, without thought, to wherever I needed to be, as they always had in the past.

I saw no less than 20 medical doctor specialists. At first my condition was thought to be MS, then lupus, then Lyme disease. Maybe it was rheumatalogical, they’d say, or maybe some other auto immune condition. Or maybe, my favorite doctor surmised, “It’s McAvoy disease” – my own unique physical decline.

I was constantly exhausted. And by “exhausted” I don’t mean super tired. I mean that there was zero energy in my body. No gas in the tank. Nothing. I often felt as if I were evaporating, that the molecules of my being were dispersing like vapor — there was no core engine holding me together and at a steady idle. To breathe was an effort. To sit upright was an effort.

I couldn’t think, I couldn’t sleep. My life, as I’d known it, was slipping away.

One day, about three years into my undiagnosed condition, my primary care doctor asked me if I’d ever heard of “fibromyalgia”. He said this “f” word in a whisper. I couldn’t understand what he was saying, so I asked him to repeat it. He did, still in a whisper. Whatever he was saying was not familiar to me. His whispering, I later realized, came from his feeling that he was saying a bad word in the medical community. He didn’t want his colleagues to hear him use the “f” word. When pushed, he said it loud enough for me to sound it out and later research it in the privacy of my home.

It was another year or two before I was definitively diagnosed with fibromyalgia and chronic fatigue. This lag in diagnosis is typical, as typically physicians considered the symptoms of this condition (from which some men suffer, too) “female hysteria” or “yuppie disease”. I think the same physicians would put childbirth in the same category, if not for the fact that there is evidence of childbirth in the real presence of an infant after nine months of what they would probably consider hysteria. Ditto menopause, but for the blood work they can now count on to validate treatment.

Fibromyalgia, or whatever you choose to call it, is now presenting with evidence of its existence in brain imaging. So, western doctors, who are scientists more than they are healers (my opinion) now take note of it. And, as well, there is so much money to be made (by all parties involved, except the patient) in the prescribing of a wide range of medications (where the real rubber hits the real road in real, modern, western medicine) that to treat patients with this condition is becoming a no-brainer for the business-driven acumen of many physicians.

For ten years now, I’ve had fibromyalgia/CFIDS (chronic fatigue immune deficiency syndrome), or ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) as it’s now being called. And, yes, I have a serious attitude about how my health was “managed” for the first six years I was treated by the medical community  – which treated me as suspect, cuckoo, as if exhibiting hysteria, playing the system, looking for drugs, etc.

Long ago, I stopped expecting the medical community to help me, and my new sensitive system could not handle the medications they continuously prescribed. My greatest relief from the pain and stiffness of fibromyalgia and the exhaustion of chronic fatigue comes from an “alternative” treatment, Network Chiropractic (sorry Pfizer), a light touch form of chiropractic practice that helps balance the sympathetic and parasympathetic neuro-pathways. And I found inspiration from such people as Stuart Murdock (of the music band Belle and Sebastian) who had CFS at a young age (and for the most part, overcame it) and Laura Hillenbrand (author of Seabiscuit: An American Legend and Unbroken: A World War II Story of Survival, Resilience and Redemption) who has lived with an extreme case of CFS for more than 25 years.

It was ten years ago that I first experienced the symptoms of ME/CFS. It was debilitating for six years. But in the past four years, I have found a balance in my energy output and energy reserves. The excruciating pain that defined the start of each day is less acute, though still defining. I don’t put anything on my calendar before 12:00 p.m. My days get off to a slow start, though, typical of many with this condition, my alert and energetic (a relative term) time of day is late afternoon/evening.

Always an optimist, I see the upside of having lost the robust health I enjoyed until mid-age. I am an accidental writer because of ME/CFS. When I could no longer reliably keep the hours of the employed, I fell back on a basic skill that I could do as focus and energy allowed. I am an accidental photographer because of ME/CFS. When trying to “exercise” (i.e., walk at a slow pace on a flat surface – around a pond in my neighborhood) I decided I would take photos of what I was seeing, and then was born SilverLining (my photo blog) and MaryMcAvoy-Photography.

ME/CFS falls into the category of “invisible” illnesses. Like MS and other auto immune conditions, the person with ME/CFS is often healthy looking. This lends to the difficulty people (doctors included) have in understanding the degree to which this condition can impact a person’s life.

I now live the hours of each day with conscious deliberateness – I appreciate anything I’m able to do, as there have been many days when to simply rise from my bed has been a Herculean effort. But rise, I always do.

That the “f” word can be said out loud is a great advancement. That it has its own awareness day is wonderful. And I hope the new awareness about ME/CFS that May 12 provides helps even one person struggling to understand and adapt to what is happening to their body. My message to that one person – hang tough.
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29 Comments leave one →
  1. June 23, 2014 2:04 pm

    Thank you for sharing this. I was diagnosed with fibromyalgia at the age of 12, after being poked, prodded, and told by several providers that it was all in my head. I’m sorry that someone else had to experience the same treatment from medical providers; however I’m glad you were able to put a name to this disease and find treatment that works for you!

    Like

    • June 23, 2014 3:00 pm

      I can’t imagine this happening to you at age 12. That’s so young.
      I hope you have found solutions so that you are enjoying life.
      Thinking healing and happy thoughts for you!
      Mary

      Like

  2. June 18, 2014 2:00 am

    I get inspired from this post. It reinstates the fact that even worse things bring the best with them (refer to accidental writing and photography). I decided to read this post as the term mentioned was new to me, and I am still reading what exactly it is. Thanks for sharing.

    Love and blessings
    Purnima

    Like

    • June 18, 2014 1:07 pm

      Hi Purnima,

      I’m so glad you took the time to read the post and learn more about fibromyalgia.
      And, yes, around every dark cloud is a silverlining!
      (In fact, that’s why the first writing I did, on a photo blog, I named SilverLining.com)
      Thanks for the love and blessings.
      Love and blessings to you as well,
      Mary

      Like

  3. June 17, 2014 10:14 pm

    I can totally relate to what you are saying. My mother has also been diagnosed of fibromyalgia, and it pains me to see her suffer. Thank you for sharing.

    Like

    • June 17, 2014 10:17 pm

      Thanks. I hope your mother finds solutions to help her energy and pain.
      Sending healing thoughts…
      Mary

      Like

  4. June 17, 2014 2:30 pm

    Reblogged this on Rich's Rambles and commented:
    One of those “in the closet” conditions that we don’t hear enough about. When people are suffering, we need to pay attention and give compassion, not criticize them. Criticism or mocking never healed anyone of anything!

    Like

  5. June 17, 2014 5:00 am

    Dennis, can we use a different word than ‘sufferer’ (‘a sufferer’s point of view’)?

    I live with chronic stuff, and absolutely refuse to suffer. I’d rather leave that to people who have time to waste, and no other hobbies.
    Sufferers also need sympathy. I can tell you, that people who say they feel sorry for me live very dangerously!

    Many Twinkles,

    -b.

    Like

    • June 17, 2014 3:00 pm

      Hi Babewyn,

      I’m sure Dennis meant well!
      But I know what you mean.

      I think the best thing is for each of us to be aware that every person has some burden in their life.
      So, kindness should always lead our interactions with everyone.
      Nobody gets through this life without some unexpected thing to adapt to.
      It’s the nature of the human experience.
      And I suppose that how we each handle it is the mark we leave.
      Best wishes and keep your great outlook!
      Mary

      Like

      • June 18, 2014 6:42 am

        Denis rocks, and really like his blog that is all about the human experience! Really good read about real things, and real people.

        I remember back in the 80s when we tried (successfully) to get rid of the phrase “AIDS-victims” for people living with HIV/AIDS. People used to ask, ‘what’s the difference?’ We all know what the difference is.

        Every time folks say to me, ‘Oh poor Soandso has XYZ,’ my first thought is of course ‘Is there something i can do to make that more livable,’ but the second thought is generally, ‘Well now Soandso has got his/her wake-up call, time to start living!’
        At least that was how it was for me. I have never lived so intensely, and had fewer fear than since the message was driven home ‘you really are gonna die (some day), and right now is the moment that you have.’

        It is a message most people could use a dose of, not just people who got smacked up-side the head, by what ever happened to smack them up-side the head.

        Auntie B.

        ps.: I actually feel sorry for people who don’t (think that they) have troubles.

        Like

      • June 18, 2014 1:42 pm

        Hi Auntie B!

        This is a GREAT comment!

        It’s so true.
        For years my mortality was front and center each day
        as my body and abilities declined.
        My first reaction, after the realization that my life had dramatically changed,
        was to be so grateful for the 47 healthy years I’d had.
        I thanked God every day for the blessing of the health I had enjoyed.
        And I was so glad that by whatever twist of fate, I had lived a full life
        with lots of physical activity – tennis, power walking, dancing.
        Sometimes when I couldn’t fall asleep because of the fibromyalgia
        (getting quality sleep is one of the biggest challenges)
        I’d close my eyes and pretend I was playing tennis.
        I’d feel the heat of the sun, I’d feel the strength of my body –
        I was so grateful to have that memory to draw on.

        At the same time, my inner spirit became what I was more conscious of,
        more so than my body. I think you become highly reflective when your health/life is threatened.
        It’s as if you finally have the right prescription glasses on!

        For me, the bottom line, where the rubber hits the road,
        is love. Everything we do should be done with love.
        Everything.

        Thanks so much for your wonderful thoughts.

        Mary

        Like

      • June 18, 2014 3:55 pm

        😀

        Like

  6. June 17, 2014 3:59 am

    I too have fibromyalgia, was diagnosed finally in 1999 after being told by one doctor that he was sure I could work at least 8 hours a week in a supermarket or petrol station – without examination of any kind and after I’d told him I was so knocked out I couldn’t even walk up the small hill from our house to the adjacent hospital. I did get diagnosed by a rheumatologist who simply sent me on my way with no further advice. Luckily I knew a fair few people in the alternative health professions who’ve helped me enormously but often I underestimate how FM affects me because it’s been a long, slow (!) journey. I too was a Type A personality, “fast” was my middle name. However, I have worked to stay positive, I don’t read support group material because i find it too depressing, but now I am an artist and, like you, a photographer. Funny where life leads you. I enjoyed your post because I woke up this morning feeling negative about the sciatica I am now suffering but I’m reminded by you that the ghost of FM walks with me and I need to be a whole lot kinder to myself. Thank you and good luck with your life. Take care.

    Like

    • June 17, 2014 2:47 pm

      Hi Crazy Crone,

      Thanks so much for your thoughtful comment.
      Fibromyalgia is not an easy thing to live with.
      Like you, I quickly realized that the support group vibe tended to be full of negative energy, something I stay far away from!
      Despite its pervasive impact on my life, many things that have not been good, I still find blessings in the journey.
      My writing and photography topping the list.
      Best wishes and healing thoughts to you,
      Mary

      Like

  7. June 17, 2014 2:34 am

    Hi Mary, thanks for visiting Gotta Find a Home and for your comment. This post is very helpful in explaining fibromyalgia. I have reblogged it for the benefit of my readers. ~ Dennis

    Like

  8. June 17, 2014 2:31 am

    Reblogged this on Gotta Find a Home and commented:
    My last post introduced the subject of fibromyalgia. This post by Mary McAvoy presents the disease from a sufferer’s point of view.

    Like

    • June 17, 2014 2:41 pm

      Hi Dennis,
      Thanks so much for the reblog.
      Fibromyalgia is so misunderstood that I’m glad to reach more people with my post.
      Again, thanks.
      Mary

      Like

  9. August 12, 2012 1:49 am

    Surprising to think of sotemhing like that

    Like

  10. July 19, 2012 8:25 am

    How horrendous that it took that many years vfor you you to be correctly diagnosed, as well as to be taken seriously. I admire you’re perseverence and how you are also able to see the upside, in that you are here. Writing. And writing well.

    Like

  11. June 13, 2012 12:48 pm

    Great post. And you’re such a strong person! I’m sending your way some positive vibes!

    Like

    • June 13, 2012 11:16 pm

      Thanks nyparrot!
      I’m picking up the vibes!
      Your blog gives off great energy!
      Best of luck with it!

      Like

      • June 13, 2012 11:25 pm

        Thank you for your kind words, Mary. I am getting very positive energies going from you too. I’m looking forward to reading your blog

        Like

  12. Momentum Coaching, LLC permalink
    May 25, 2012 12:55 pm

    Thank you for sharing this personal story. I can only imagine the frustration you went through with all those md consults and the changes you experienced out of nowhere. And I can imagine it all more clearly from your expressive, heart- felt writing.

    It seems to me that times of suffering force us to reach out so as not to feel alone when we in fact, feel so alone with what we’re going through. Though I’ve known about this “f” word for awhile, you’ve added greatly to my perspective of the life changes and pain it causes.

    I so admire your strength and courage, Mary. ..and your reminder to live life appreciatively and deliberately.

    Love, Trish

    Like

  13. May 23, 2012 2:33 am

    My heart goes out to you with the struggle you had in diagnosing your condition. My sister suffered similarly for years before being diagnosed with Aplastic Anemia.

    Like

    • May 24, 2012 2:04 am

      I’ve just looked up Aplastic Anemia – thanks for sharing the idea of it. I’ll pay attention and talk to my PCP.
      Nice writing – your post Stupid Muffin.
      Thanks for caring for another person with such sensitivity.

      Like

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  1. May 12-Fibromyalgia Awareness Day | sublime days

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