Is it real? The past decade of my life suggests so

January 14th, 2008

I’ll be honest. I’ve been having a really difficult couple of days. I’m in the process of switching medications for fibromyalgia and coming off Effexor is proving to be every bit as brutal as all the web sites say. I’m unspeakably emotional, weeping at the drop of a hat. I feel dizzy and confused a lot of the time. And I get these random jolts, like electricity shooting through my body, especially, today, when I move my eyes quickly from side to side. So I suppose you could say I just wasn’t in the right mindset to come across today’s New York Times article by reporter Alex Berenson, entitled “Drug Approved: Is Disease Real?”

As soon as I read the headline, I knew the article was about fibromyalgia.

A little history, if you’ll allow me… Eleven years ago, I was rear-ended for the second time in two years. Instead of improving over time, the pain that resulted from the accident spread and worsened over a period of months. I felt, for days at a stretch as though I’d worked out really hard — that same kind of achy muscle fatigue. Initially, the pain was mostly in my neck, shoulders and back, but it soon gravitated to my arms and my legs. It cycled in and out, so that sometimes the burning in the backs of my legs was so great walking up a flight of stairs was a tremendous challenge, or raising my arms to put away dishes left me in tears.

In addition, a whole host of other odd symptoms emerged — I was constantly exhausted, but had terrible insomnia; I was introduced to the joys of irritable bowel synrome, the specifics of which I will spare you; I had great difficulty concentrating and my memory was tremendously affected, to the point that I’d wonder if I had some sort of early-onset Alzheimer’s. I’d start a sentence and simply couldn’t find the words to finish it. I’d start to do a task and, midway, forget what I was doing. My ability to recall basic facts ebbed and flowed and it affected my work tremendously. I was working at a marketing firm at the time and not only did sitting at a desk leave my upper back, neck and shoulders throbbing but whatever was happening with my mind was eating away at my performance. I was making a host of mistakes, forgetting to check things or complete tasks entirely. It was awful. I was afraid all the time of messing up, getting caught and losing my job.

I was fortunate enough, at the time, to be seeing a really terrific holistic physician. Lord knows why I chose her, but I’d gotten sober just a few months before and was on something of a health kick. At first, she thought perhaps what I was experiencing might be part of early recovery, as my body and brain tried to repair the damaging effects of alcohol dependence. But things got worse, rather than better and, after some concern that I was displaying signs of lupus or MS, my doctor finally concluded that my symptoms matched a diagnosis she had only recently heard about: something called fibromyalgia. She put me on Effexor, a now-very-popular drug used primarily for depression, which she told me was said to be effective in the treatment of fibromyalgia. She was, in her way, very ahead of the curve.

I was so grateful to finally have a name for what I was experiencing and I began to research fibromyalgia. There wasn’t much information out there and what little there was highlighted the controversy surrounding it: some doctors felt it wasn’t a real condition, that it was largely in the minds of sufferers who, for the most part, tended to be women in middle age. Protests from the medical community also surrounded the labeling of fibromyalgia as a disease, since there’s no laboratory test to confirm the diagnosis. I wasn’t overly concerned about whether or not it was truly a disease, versus a condition or a syndrome. What was far more disturbing to me was the idea that it was merely an “imaginary” condition mostly in the minds of silly, middle-aged women.

Over the next five or six years, I saw a number of different doctors — from primary care physicians to pain management specialists to chiropractors — with varying degrees of “belief” about the existence and/or the nature of fibromyalgia. Some were skeptical, but the worst of the lot was a cocky pain management doctor in Indianapolis who told me fibromyalgia was a “junk diagnosis” and then diagnosed me with it anyway. (Which I only discovered after leaving his office in tears and sneaking a look at the diagnostics form before handing it to the nurse at the front desk.) I’ve been told over and over again that I have it and, occasionally, that I don’t. And the truth is, I don’t really care if what I have is called fibromyalgia or not. I’m not interested in the label; I don’t care what it’s called.

But I do know that whatever it is I have, it’s very real, despite the occasions I’ve spent in doctors’ offices, reduced to tears by the suggestion that it’s all “in my head.” And perhaps I could have sunk further into depression and self-doubt, questioning my own sanity (which I did anyway, at times), did I not have a husband who witnessed my very-real symptoms as well as my active attempts to do whatever it takes to make them go away and, barring that, manage them as well as possible.

Again, I don’t care what the medical community calls this. I don’t care if it’s a disease or a disorder or a syndrome. What I do care about passionately is the mindset of the doctors in The New York Times article: that this is just in the minds of the patients and that naming it and offering treatment merely encourages patients to think they have something. One of the doctors quoted even suggests that fibromyalgia patients just don’t seem able (willing?) to cope with pain that the rest of the world just deals with by pulling up their bootstraps. It’s an insulting, insensitive, dismissive and deeply disheartening comment. And it smacks of the same medical institutional sexism that dismissed menopause as “hysteria” for centuries. As a patient, I can tell you that there is nothing worse than being in tremendous, life-altering pain and being told, often with a hint of disdain, that it is all in your head.

I’ve admitted that I’m prone to bouts of tears with little provocation right now. But to this morning’s article set me off again. I’m not trying to play the martyr, but I’ve suffered a great deal at the hands of fibromyalgia (or whatever the hell you want to call this group of difficult, unpleasant symptoms) for over a decade now — and perhaps the biggest disservice I’ve done to others with this condition (and myself) is my pride-driven ability to hide it from those around me. (Ask nearly anyone who knows me — only a select few know how much pain and exhaustion I’m usually coping with.)

I’m willing to field accusations of being reactionary but I also think the article is sloppy journalism. I think it takes a very limited and superficial “is it or isn’t it?” glance at fibromyalgia, inspired, apparently by the FDA’s recent approval of Lyrica as a drug for fibromyalgia — without talking to patients or even providing a full, clear scope of the symptoms afflicting fibromyalgia patients. I understand the article’s assertion that drug companies have a very real and lucrative motive for wanting to promote fibromyalgia as “real.” But that doesn’t actually mean it isn’t. It doesn’t mean that the suffering of all these people is imaginary.

I actually went to my doctor last month to talk to her about Lyrica. She wasn’t gung-ho about putting me on something relatively new to the market, with no long-term data on its effects and I appreciated her perspective. Instead, we talked about Effexor, which I’d been taking for over a decade, and how much it seemed to be helping me and if it was time to try something new. Thus, we decided that I would come off Effexor and try neurontin, a drug that has many applications, not the least of which is pain relief.

I did some research on withdrawal from Effexor and, by all accounts, it is unpleasant at best and brutal at worst. I’ve spent the past few weeks weaning off to the lowest prescribed dose and yesterday was my first day without any Effexor in my system. And it has, to be honest, been lousy. In addition to the weeping jags, I feel constantly dizzy and off balance. I have what feel like small jolts of electricity going through my body, especially when I move my eyes quickly from one location to another or turn my head quickly. It is deeply, deeply unpleasant and unsettling…but it seems to be par for the course in getting off this drug, upon which my neurological system has depended for 11 years.

It’s possible that these symptoms could worsen, although I hope not. And it’s likely they’ll continue like this for a while, although whether that means three weeks or six months remains to be seen. So what’s my point in telling you all of this? Partly just because it’s what’s happening to me right now and that’s what I write about here. But also, perhaps more importantly, because I think it’s pretty obvious that a sane person wouldn’t put herself through any of this if there weren’t a very real condition for which she hopes to seek relief. No matter what you want to call that condition.

Entry Filed under: I don't get it, Just Life