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Fibromyalgia then and now

May 22, 2009

I don’t normally keep track of things like this, but I happened to do the low math to see how long it had been, and this is the 25th anniversary of my life with fibromyalgia. I have to say it hasn’t been a functional, constructive, or nurturing relationship. Since my diagnosis, research has come a long way, and, yes, Virginia, fibromyalgia is very, very real, and this reality is very, very vindicating.

I was originally diagnosed by a vanguard family physician who learned of fibromyalgia at a conference and became an instant true believer — I think it was because of his wife. His enthusiastic ministrations focused primarily on muscle relaxants that knocked me out. The exception was Indicin, which sent my blood pressure down to 56/38 — and that was after riding my bike 3 miles back to his office. Since then, I’ve seen two rheumatologists and several internists. I’ve been through the drill: overmedication, harmful exercise, and life sentences of eternal rest.

Interestingly, I have a lot in common with other people I know with fibromyalgia. We always thought we had pretty high pain thresholds, we were high achievers, we enjoyed life, we’d never wanted to be sick, and a couple of us had always believed that back pain was a cultural myth. Fibromyalgia was a slash-and-burn campaign against all of the above. Suddenly we had leveling pain. We gave up a lot of things we did because of the pain. We were determined to continue to enjoy life, but it was through gritted teeth. We got sick. And now we believed in back pain. Pain begets empathy, but you never really think anyone else hurts as much as you do. At least not on a really bad-flare day.

I can’t prove this clinically, but fibromyalgia is my prime suspect in the crash of my immune system and the onset of my Addison’s disease, which is chronic adrenal failure. This article
cites the “pituitary-adrenal axis.” We know that people under persistent torture can die of immune failure. The article contains some very helpful information on recent research. At least we’re now at the stage where fibromyalgia has crossed from the sphere of neurosis and imagination to empirical and clinical credibility. Because the syndrome occurs with far more prevalence in women than in men, it spent years in the circular file with neurasthenia. But despite fibromyalgia’s seal of medical validity, management remains elusive, and cure aspirational.

Whether or not fibromyalgia can be triggered by a trauma remains equivocal. My husband was massaging out a badly flaring trigger point on my back that has been a source of demoralizing and activity-limiting pain for 25 years. He remarked that the point happened to be easy to locate because I have a scar directly on it. I recalled that the biopsy excision scar was from a procedure I had 26 years ago. Maybe it’s just an interesting coincidence; maybe the excision was a traumatic trigger. As of this writing, this is in the can’t-know zone.

I’m not big on meditation or “positive energy” or vegetables or yoga. If any of these things work for you, cool. I think there is one axiom every person with fibromyalgia needs: never never never never never never give up.

One Comment
  1. Laura permalink
    May 23, 2009 8:03 pm

    Dear Lauren, I found the article interesting and informative (okay, until about page 4 where the technical stuff begins), but I wish I weren’t reading it in this context. :( I was shocked to learn that, also about 25 years ago, a close friend with colitis couldn’t get past the “it’s all in your head” thing with her doctors. The best they could do was recommend a psychiatrist.

    By the way, I keep finding new uses for Bon Ami–like for stains that won’t go away with anything but–and I thank you in my head each time for the tip. So thank you, out loud. :)

    And blessings on your Lord’s Day. May you enjoy a real taste of heaven in worshipping our great God tomorrow.

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