Fibromyalgia as a legitimate disorder

Last week, my husband and I were going a bit stir-crazy being cooped up in the house so much. We’ve been busy packing, and my husband has been busy with schoolwork, but it was getting us down. We decided to pack up and take a day trip to Chicago (well, a quick overnight trip). I figured it’d be a great way of testing out my new pain control.

And I did do pretty well, I have to admit. I walked and walked and walked, with minimal complaining. However, my fibro flared up and made my shoulders ache. My skin hurt all over. I spent 3 days after we got home just lounging on the couch and dealing with nearly unbearable pain in my shoulders and neck. Okay, fibro, I get it. You win this round. But I still get credit for covering so much ground on foot in Chicago.

A news story was published today saying, “A Massachusetts anesthesiologist has been accused of fabricating results in nearly two dozen published studies that claimed to show after-surgery benefits from painkillers including Vioxx and Celebrex.” Other drugs included Lyrica and Bextra. (source) The plot thickens when we find out that this doctor was funded by Pfizer for 5 years to study the effects of their own drugs for pain control. It sure does seem shady. I would like to believe that Big Pharma has only one noble goal: to cure people. But I’m bitter and jaded (and an ex-pharmaceutical employee), and I know that every pharmaceutical company has the same goal, and it’s not about curing people. It’s about making money. Obviously they’re making money by improving quality of life for some people who can afford it, but the bottom line is the almighty dollar.

Fibromyalgia is a vague disorder (more of a syndrome), diagnosed by excluding everything else. Those of us who have fibromyalgia have a lot of similar symptoms (including symptoms that are not in the diagnostic criteria but probably should be), but I admit we’re an exhausting bunch. Our symptoms change from day to day, sometimes several times a day. We may not know exactly when our symptoms started, because they’re so vague and creep into our lives slowly over time. We may not be able to articulate what hurts and how it hurts because the pain is so complex, deep and throbbing in the muscles yet the softest touch on our skin feels like we’re being stabbed with a serrated knife. And, let’s not forget, those of us who are fat are usually told our problems are due to our weight, because that’s much easier than working towards a diagnosis and treatment plan for a bunch of annoyingly ambiguous symptoms.

This makes it very difficult for me to trust the pharmaceutical companies. I’m not sure they have our best interests in mind. Fibromyalgia has had diagnostic criteria since 1990, but it’s been fairly vague (with the exception of the Tender Point Test, which requires doctors to be very precise and consistent when conducting). Then along comes Lyrica, with a vague list of indications. Lyrica, meet fibromyalgia, “a textbook definition of an unmet medical need,” according to Pfizer (source). Unmet medical need, or unmet need for profit? Lyrica pretty much cleared the billion dollar mark in its first year (source), as well as opened the door for a whole new chapter in Pfizer’s portfolio: fibromyalgia drugs. Since then, Lilly’s Cymbalta has also been approved for the treatment of fibro, and there are more drugs coming down the pipeline.

It’s almost like fibromyalgia was tailored to fit the drug, not the other way around. The fact is, fibromyalgia is a real disorder, with real symptoms, and real people suffering from it. The symptoms may be vague, but they’re there, and they’re predictable. Not every doctor has bought into the reality of fibromyalgia as a disorder, but they also used to treat homosexuality as a disease and practiced bloodletting to treat fevers, so I have hope they’re going to come around eventually.

Unfortunately, I think fibromyalgia is just a victim in the crossfire between the need for more government-funded research and the profit-driven privately-funded research conducted by pharmaceutical companies. If the government funded more research in this area, they could strive to fund less biased researchers, such as the ones at universities. Pharmaceutical companies could spend more time manufacturing less expensive drugs with more of academia conducting research instead of Big Pharma doing the work. I want to see more research being done with chronic illness, and I don’t want to hear about doctors funded by Big Pharma grants sitting in a room together creating some diagnostic criteria to fit the indications for a new blockbuster drug. I know my solution isn’t perfect, and I’m not claiming this is the only right way to solve this problem, but I’m getting sick and tired of reading about how fibromyalgia is a “murky” disorder, and I’m even more sick of hearing that it’s all in my head. (One more link on the subject, here.)

And my disclaimer: I’m not arguing that Lyrica and Cymbalta are not effective for people. I know these drugs work and have turned lives around for many people suffering with fibromyalgia. I want these drugs to stay on the market, and I want people to continue using them responsibly, if the drugs are helping them. But what I don’t want is another conveniently vague disease plucked off the shelf to extend the patent life of a drug. We should be researching fibromyalgia for the sake of understanding it better, not for the sake of selling drugs.

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6 Responses to “Fibromyalgia as a legitimate disorder”

  1. Nicole Says:

    agree. Thanks for writing such an in depth post about this issue! It often makes me to angry to be articulate. ;)

    • fibrofatty Says:

      Thank you so much. I usually just get angry, myself. It took me awhile to compose this, heh. I’m trying to channel my energy productively! Thank you for taking the time to read it.

  2. notesalongthepath Says:

    They’ve discovered a retro-virus linked to Fibromyalgia and Chronic Fatigure Syndrome. More info here:

    http://notesalongthepath.wordpress.com/2009/10/10/fibromyalgia-chronic-fatigue-virus-isolated-whoo-hoo/

    • fibrofatty Says:

      Thanks for the link to your blog post about this. I’d heard the news, but read that the study was for those who had been diagnosed with chronic fatigue syndrome. There’s a lot of overlap with CFS and fibromyalgia, but it looks like they’d focused their efforts on those with CFS (or CFIDS/ME, to be clearer). It’ll be interesting to see what happens in the future in terms of fibromyalgia. I do have the post-exertion malaise that’s associated with CFS, and all of my symptoms started after getting mono, so I’ve felt this was virus-related (at least for me personally) for awhile now. I’m curious to know how this discovery will continue to develop.

  3. notesalongthepath Says:

    I believe FMS and CFS are one illness. Everybody who is diagnosed with one or the other, has symptoms of the other. Maybe that will be part of the healing changes, giving the illness a new name that incorporates all the symptoms. When the test is available, we can all be tested. If we have MSRV, we can get in line for treatment, no matter what illness name we’ve been labeled with. I’m so excited and grateful for the research.

    • fibrofatty Says:

      I’m not convinced they’re the same illness, but there’s certainly a great deal of overlap. however, i know a lot of fibro folks who really benefit from regular exercise, but i find it’s overly exhausting 100% of the time (no matter how gentle i am), and most (90% ?) of the time it causes pain flareups. Perhaps my case is more severe than those who benefit from exercise, and it *is* the same illness, but it definitely seems like there’s a group of fibro folks who are really functional, and a group of fibro folks who are not, and i suspect the ones who are not might also have overlapping CFIDS.

      Obviously, that’s just another opinion to be thrown into the mix. There are a ton of theories out there about both disorders. Hopefully this XMRV discovery will lead to many more discoveries and answers.

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