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

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.