Wednesday, June 15, 2011

Fibromyalgia Awareness Day (May 12) and Why I Give a Hoot

Coming out about anything that might be viewed askance, misunderstood or dismissed is risky business. This is especially true when revealing whatever is being revealed can have negative consequences. 

The same goes double when health conditions are involved; triple when it's a  "hidden disability."  (Dear God I wish I had a buck for every time I've been told, "But you don't look sick.") For this and other darn good reasons, I have only recently begun talking publicly (i.e., on Twitter) about my adventures with fibromyalgia. I was diagnosed in 1986.

I finally agreed to write about it because I was persuaded to do so by healthcare communications colleague, Christine Kraft, MS, who has been producing personal stories in the health space for more than 15 years. 

My Fibromyalgia Story
I prefer to call fibromyalgia a “total pain,” and I mean that quite literally. It’s inconvenient to have and nearly impossible to describe without sounding nuts. When I was first diagnosed in 1986, it was called fibrositis and considered nearly completely bogus. A lot has changed during the past 20+ years.

These days, rheumys (i.e., rheumatologists) and neuros (i.e., neurologists) tussle a bit over who “owns” fibro. Endocrinologists have been known to get involved. Back in the 1980s, few doctors were willing to consider that the long list of diverse symptoms might add up to something real. There weren’t any support groups. How could there be? Fibromyalgia didn’t exist as anything other than what’s charmingly known as a “garbage pail” diagnosis.

Thanks to crappy health insurance, I ended up with a young primary care physician who didn’t dismiss me as either a 19th century neurasthenic or a 20th century neurotic. He took my debilitating fatigue and chronic pain seriously, possibly because a pack of practitioners had already ruled out lupus, multiple sclerosis, Sjögren’s Syndrome, and the Epstein-Barr virus. Specialists had already treated me for IBS, hypothyroidism, hypoglycemia, Lyme disease, and intestinal parasites, but I was still a physical wreck. What could possibly be left?

Believing the tender point test had diagnostic validity, this courageous doctor proceeded (without ample warning) to apply gentle pressure at each of eighteen points on my body. I threatened to slap him if he didn’t stop. I guess that cinched the diagnosis. 

Finally, a Diagnosis
“You have fibrositis,” he said. And the treatment? Nothing. He thought dancing might be helpful.

Over the years, I’ve tried hatha yoga, changing careers, walking, lectio divina, a vegan diet, choral singing, and gardening. I wrote books, got divorced, moved to a house without stairs, went back to eating red meat. I served nearly seven years as a personal aide to a woman with quadriplegia which got me thinking about disabilities that are hidden as well as those that are visible. It’s hard to tell which activity, event, or commitment has delivered the most relief from physical pain and emotional exhaustion. 

Medications for Fibromyalgia
Of the medications developed for fibro, I can take exactly none of them. They turn me into a zombie, and not in a trendy, cult kind of way. I did enough digging around on the Internet to gather enough information to convince one physician’s assistant to try an off-label use of one drug; that worked for a while.

Three years ago, I found a Phase I clinical trial (that I didn’t get into) testing vagus nerve stimulation to alleviate fibro pain. Surgically implant the thing on my face if you have to, I told the principal investigator. We hear that a lot, she said. I was excluded because I’d been in a car accident. Some clinicians suspect fibro may be caused by physical trauma; others think it might eventually be traced to a virus.

Read any list of symptoms, exaggerate them exponentially, and that’s usually what I’m feeling. On good days, I stagger around with what feels like the flu. On worse days, every cell and nerve ending feels like a tiny flickering flame igniting over and over and over again. 


I Do As Much As I Can
After all these years, I basically try to ignore all of it. I do as much as I can, sometimes more just to make a point. Still, I’ve canceled travel, meals, movies, visits, meetings, and even physical therapy at the last possible moment because I couldn’t sit, stand, or walk. I’ve abandoned shopping carts because it was either do that or not be able to drive home. My daily schedule must include napping, which is one reason I had to stop working in other people’s offices. I also can’t tolerate their lighting, HVAC systems, or noise. 

I Am Not My Condition
Although fibro now seems to be recognized as legitimate, I don’t talk much about my experience. This is, in fact, the first time I’ve written about fibromyalgia. I’ve had my reasons, mostly having to do with how long I’ve lived with it. Being sick of it has finally eclipsed being sick from it. Would it be too much of a cliché to insist that I am not my disorder? Let’s just say I’m determined not to be, even when this always-existing condition almost persuades me otherwise.

15 comments:

  1. Thank you for your brave and eloquent act of coming out. Your words will help others.

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  2. Meredith you are an inspiration. Thank you so very much. God bless!!!

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  3. What Brian said...Thank you. You rock.

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  4. Meredith, thank you for having the courage to post this. The more education people get about this illness, the better it will be understood.

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  5. Wonderfully written, bravely told, an inspiration. Thank you for educating me about a condition I knew nothing about.

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  6. Your story is a "healing read" for any audience and I agree with Brian Ahier: "Meredith you are an inspiration!"

    Glad to have your words included in the first set of stories published on BetterMedicine.com. Looking forward to hearing more from you on all of the need-to-know topics of the day.

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  7. Bravo Meredith. Well done for speaking about this.
    Your condition is one I can relate to totally as I have had rheumatoid arthritis since 1995. Because I often look superficially OK people can't understand what it is like and I talk about it rarely but there are days I could literally curl up and die.
    I think you cope brilliantly !
    Blessings

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  8. I left a comment on this yesterday but maybe Blogger lost it in the upheaval. Suffice to say I know you are a brave lady and I commiserate and relate to what you say, having had rheumatod arthritis for 16 years now.
    Blessings

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  9. I can really relate. I was diagnosed in 1989. My rheumy did a tender point exam with no warning also and I hit the ceiling a couple of times but it never occurred to me to tell him to stop it! When he was finished he said "Fibromyalgia. You've got it." He was more helpful than your doc after the diagnosis, but when I changed jobs and no longer had insurance, he told me I was cured and turned me loose in the world.

    I also stopped talking about my health at work, until I could no longer work. Then I started blogging about it in 2007; there's no going back now!

    Thanks for coming out this Awareness Day! Your story touched me and I'm looking forward to exploring the rest of your blog(s).

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  10. Phil: Glad you reposted. Looks like Blogger managed to lose all comments from yesterday. RA -- major ouch. I'm ramping up to writing about the spiritual dimensions fibro has managed to illuminate over the past 25 years.

    Sherril: Nothing like being an "early adopter," eh? I've managed to dodge around the work stuff by freelancing. Gives me the freedom to set my own hours (read: nap) but has also substantially depressed my income-earning ability. Joy. NOT.

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  11. Dropping in again to say thanks to everyone who posted comments that were dumped during Blogger's crash the other day. Please know that I appreciated your kind words...beyond words.

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  12. Exactly. I have fibromyalgia. It doesn't have me.

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  13. Thanks for your candidness, Meredith. So much of "owning" a chronic condition means dealing with it all internally, without much support, especially if the disease is invisible to others. I appreciate you "coming out of the closet" and am pondering the same in my own life. I haven't written about FMS to date (I share your diagnosis), but need to. You've inspired me.

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  14. Thank you for your candidness, Meredith. It's hard to "come out of the closet" with a chronic (invisible) condition; it makes you vulnerable and human. I haven't written about my FMS experiences, but you've inspired me. Thank you!

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  15. Thanks, Lauren. As I mentioned when we spoke by phone, it took a long time for me to write about this, in part because I find a certain degree of denial keeps me ambulatory!

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