The thing about fibromyalgia is that not all that long ago, it was a synonym for "hypochondria"—and that holds true in the minds of many today. In the '90s it was known as the "wastebasket diagnosis," because anyone who had pain that couldn't be explained by existing medical conditions got that diagnosis dumped off on them and sent off for some other doctor to deal with, whiny old women that they were. (There is an established diagnostic criteria for fibromyalgia, but not all doctors are trained in how to apply it correctly, and that doesn't even really matter when they don't take the diagnosis seriously anyway.)
Given that the medical establishment hasn't treated us terribly well over the years and the existing pharmaceutical treatments didn't really work, a lot of fibromyalgics turned to alternative therapies. The thing about the alternative world is that it's very warm and welcoming, as compared to the cold and uncaring medical establishment that really just gave you the diagnosis so you'd quit bitching at them already. So it's more appealing to begin with. A lot of doctors, other medical professionals, amateurs and opportunists saw a market waiting to be exploited, and exploit it they did. Said opportunists often operate clinics where the patients are "treated as a whole," and that's actually a pretty accurate description. The patients are treated with respect. There is a distinct sense that your complaints are being taken seriously—your words are believed the minute they slip off your tongue; you aren't approached critically and questioningly like in the typical doctor's office. You aren't being treated like a guinea pig, but more like a child who's just skinned his knee—they give you empathy, which is something you don't encounter in a typical medical environment.
And so the patient looks around and decides: This place rocks. And now they are invested in the treatment they're going to be offered. They want it to work. And I'm sure those of us familiar with the placebo effect can deduce the rest of the story here.
I want to throw in a disclaimer now, because I know I'm treating these things—hell, "skeptically" would be too kind—and I know that not all alternative treatments are bunk. What I'm addressing isn't the "alternative" world in general, but instead the "alternative" world that consists of opportunists and scam artists. Actually, no, that's too cynical. A lot of these people really believe in their treatment approach. They really believe they're making a difference in the lives of those suffering. And in a fashion, they are. But when held up to the light for inspection, these treatments usually fall apart.
A classic example is Dr. Paul St. Armand, inventor of the guaifenesin protocol (basically, cough syrup). I can't find the webpage now (argh!) but he used to have a personal, geocities-esque page where he claimed that the guai protocol would not just cure your fibromyalgia: it would reverse it. And he meant that in the most literal sense of the word. You would feel worse before you felt better, he said, and that's because staying on the guai protocol is like watching your disease on tape, on rewind. You'd go through the same ups and downs, the same flares and remissions, that you've already gone through in your lifetime. BUT SPED UP!
Yes, he seriously claimed this (he used the "tape on rewind" metaphor specifically). No, I am not making this up or summarizing. He quite explicitly explained this very concept on his personal webpage.
Dr. St. Armand's protocol has been held up to scientific scrutiny in the past, and guess what? It didn't check out. The study found no statistical significance over the control (placebo) treatment. Oops. A year or so after this disappointment, Dr. St. Armand came back with a rationalization for his failure. See, they didn't control the diet of the patients while they were participating in the trial. Apparently the presence of salicyclates in the body can fuxxor with the ability of guai to, you know, work. Salicyclates that are present in pretty much everything, from your toothpaste to the grass outside your front door (and this doesn't include every food you have to give up, like a diet on steroids). You have to completely eliminate salicyclates from your body before guai will work. That's an incredible task, as I'm sure you can imagine.
I actually give him a little slack on this, because it could be a fair explanation for the study's failure. But then I'm also inclined to laugh it off because of Dr. St. Armand's theory on why guai works. See, according to him, fibromyalgia is phosphate buildup in the muscles. Apparently you can feel these buildups on palpation. Now, this is pretty clearly bullshit if you have kept up with the fibromyalgia research at all. The leading explanation for fibromyalgia is "central sensitization" (recommended read! a good overview of the syndrome in general), dysregulation in the central nervous system, basically a whole bunch of factors (higher levels of substance P, less blood flow to the thalamus region of the brain, lower levels of serotonin) that come together and result in amplification of pain signals in the brain. You can see these two theories don't really match up. And if I read the second paragraph under "Role of Peripheral Tissues" in this review of the inner workings of fibromyalgia (the whole thing is a hell of a read, but worth it for those so inclined) correctly, his claim turns out to be bunk.
Thing is, Dr. St. Armand is incredibly popular. I'd almost call his followers a cult, but I don't really know if I'd go that far.
Anyway, that's just one good example of how things go. You'll find a lot of nutritional supplements and the like claiming to be able to "cure" fibromyalgia, but of course, anything that claims to be able to "cure" a condition is most likely a scam.
This post was a pretty long introduction to an issue that's been a focus of mine for a long time, and may become a regular series here. If you're ready for a takedown of a specific treatment, read on....
