A new drug for a disease which might not exist

January 15, 2008 5:13 AM

Is fibromyalgia a useful way of categorizing the illnesses experienced by several million Americans? The doctor who pioneered the study and characterization of the illness no longer thinks it exists as a distinct entity, and other experts agree. People who've been diagnosed with the disorder experience real pain, and are comforted by being able to put a name to their illness, but their doctors often think they'd have been better off without the diagnosis.

Lyrica, a new drug has been approved; patients are suspicious that it is designed to replace another very similar drug which is going generic; moreover, Lyrica, which was originally developed to treat diabetic nerve pain and seizures, has severe side effects: it increases obesity and edema in a population of patients who are already on average, overweight, edemic, and clinically depressed. The fact that FDA reviewers initially rejected Pfizer's application to sell the drug based on its unimpressive results and severe side effects has personal injury lawyers eying Pfizer already; just as corporate defense lawyers question the existence of the disease.

posted by jackbrown (52 comments total)

Just smoke dope.
posted by Henry C. Mabuse at 5:32 AM on January 15, 2008

Also, here's an interesting link to an analyst's review of the overall market for neuropathic pain drugs, pioneered by Neurontin, the soon-to-be generic mentioned above; Pfizer paid an almost half-billion dollar fine for giving kickbacks to doctors who prescribed that drug.
posted by jackbrown at 5:35 AM on January 15, 2008

Pfilthy Pfizer!
posted by Henry C. Mabuse at 5:53 AM on January 15, 2008

This is a great freaking FPP. I have a personal history of being diagnosed with FM/CFS, incorrectly, while what was actually going on with me (an occult bacterial infection in my jaw) eventually almost killed me and required a year of antibiotics and surgery to reverse.

That was a long time ago, but even then you didn't dare poke the CFS/FM true believers with the stick of doubt or you were shouted down.

Nice to know big pharma has joined alternative medicine in a complete disregard for the clinical facts as long as there is money to be made. Yuck. And this makes a heck of a pair with the previous FPP on pain killer abuse in mining communities.

Pain is a terrible, strange part of the animal condition.
posted by fourcheesemac at 5:54 AM on January 15, 2008 [2 favorites has favorites]

Judging from Livejournal, there seems to be a correlation between fibromyalgia, Tori Amos fandom, and a propensity for writing self-pitying poetry. I'm not sure whether science has looked into this.
posted by kittens for breakfast at 6:29 AM on January 15, 2008 [13 favorites has favorites]

Interesting fpp--my mother has fibromyalgia (and CFS, and other unrelated health problems) and I've struggled most of my life doubting her condition, and guilt for doing so. It frustrates me that the disease does not lend itself to easy understanding. Thank you for the links.
posted by artifarce at 6:30 AM on January 15, 2008 [1 favorite has favorites]

fourcheesemac: The fact that you were misdiagnosed doesn't mean the disease isn't real. I'm not saying it is.

I wonder if what's going on here is that Pfizer spent billions of dollars to come up with a 'new' way of treating pain, something they initially thought could replace things like morphine, while possibly not being addictive. If they could have done that, it would have made them billions, billions.

But their end result ended up being lame and having these side effects. It never would have been passed by the FDA as a general pain killer, so Pfizer looked for some other pain condition they could market it for, and they settled on this, in order to recoup their investment.

It seems like drug companies are not doing a very efficent job of drug discovery if this is the stuff their coming up with new drugs
posted by delmoi at 6:38 AM on January 15, 2008 [1 favorite has favorites]

Interesting dilemma. The fibromyalgia argument hits home in my family as my mother has been fighting with the CFS/fibro diagnosis for 25 years. Whatever her problems have been or have not been, there is no mistake she has been miserable.

Additionally, my girlfriend is a 15 year Lupus sufferer who recently had the fibro tag added to her diagnosis by her rheumatologist. She has wondered herself if the doc was just naming the pain. She was given a Lyrica prescription and suffered the common side effect of severe edema ... her legs even began "leaking" ... not a comfortable thing for one with a string bean body type.

Thanks jack, for the post and discussion.
posted by netbros at 6:46 AM on January 15, 2008

You know, my girlfriend is disabled, with Fibro, and has disability. She replied to this "news story" and told them it should be an op-ed, because, ultimately, that's what it is, a VERY article under the guise of "news".

She also posted a big "fuckity-fuck" rant in her... Livejournal ;)

There has been clinical research indicating with fMRIs that people with Fibro *do* experience pain in stronger ways.

She also pointed out that, no, not all people with fibro end up worse when seen by a doctor, but it gives them hope and they can manage it. Oh, why do patients need more of, sleep meds, pain meds? Because there's this thing called tolerance. And if the doctor was worth his salt, he would know that.

I'm not saying some people aren't, for example, seekers, or other things. But that's a different thing from fibro.

And, my girlfriend is just as skeptical of Pfizer and big Pharma as the rest of us. She hates taking any meds, hell, she even dislikes vitamins, but she's forced into this now. And you know what, it's helped. Not Lyrica, but the combination of medications she's on.

Anyways, fuck this article for making people who truly have a difficult time even more despised and look down upon. And fuck predatorial pharmaceutical companies, as well. And fuck people who do fake symptoms just to get drugs. And fuck people who think that some cases being false means the whole thing is false. There ...
posted by symbioid at 6:49 AM on January 15, 2008 [8 favorites has favorites]

A drug problem that never existed. (Ribbit)
posted by jeremy b at 6:57 AM on January 15, 2008 [1 favorite has favorites]

I've been fascinated by this as I've known a few people online who have been diagnosed with fibro. Thanks for the post!
posted by agregoli at 6:58 AM on January 15, 2008

So fybromyalgia is the medical term for being emo?

fyi, I had a series of minor injuries causing pain (and other bizarre symptoms such as this feeling in the back left side of my brain once every 6 months or so where it felt like someone stuck gum in my hair and ripped it all out, and for a few minutes after I'd have that pins and needles feeling like when your leg goes to sleep. Figured it had to be I was pinching a nerve up there but I've been told no that wouldn't be the case.) and preventing regular sleep...anyway lyrica would regulate my sleep and help me wake up without any aches. Never took it regularly enough to experience any side effects. Wish I could get more, but when I tried to refill my allergy prescription the doctor never called back. Of the next doctors I've gone to, none were willing to get me lyrica and instead I have a huge pile of muscle relaxants that leave me feeling disoriented and depressed when I choose to take them. So, anyone here try this neurotonin?
posted by kigpig at 7:03 AM on January 15, 2008

Very good post. All FPPs should be this well-researched and well-written, no matter the topic.

Whether fibro is "real" or not, I can't believe they use Cymbalta for it. Those people have my deepest sympathies - that drug is absolute shit.
posted by desjardins at 7:07 AM on January 15, 2008

I've been diagnosed with fibro. I have all the classic symptoms, the pain that feels like fever aches but with no fever, confusion, difficulty sleeping, and oh yea, more freaking pain everywhere. I'm not a wimp, I hate doctors and have powered through my share of pain, but this stuff is insane. You can't think straight because you hurt so bad. All you can do is beg for the pain to stop. Initially, I could barely walk and when I have a flare up it's nightmarish. Even when things are good, my stamina is shot. All the running, and exercising I used to do wears me out so much faster.

Getting the diagnosis and a doctor that believes that the solution is movement has helped. Yoga, stretches, and water aerobics help, as does the combination of muscle relaxers and sleeping pills. Pain killers help somewhat but I have to be careful with them because I can build up a tolerance. My doctor's also suggested an herbal serotonin supplement that seems to be helping a good bit. I have no desire to try Lyrica, mainly because of the weight gain and other icky side effects, but by god, I encourage companies to look at different ways to treat pain other than doping us up so much we can't function.

Right now, my treatment is working somewhat. I can function, but articles that make fibro out to be all in your head don't really help out. This is why I rarely tell people I have fibro. They give you that look, like they know you're a big ole faker. But seriously, I'd love to be a faker. Then I could stop hurting and go back to doing fun things like skiing and hiking or walking across the living room without hurting.

A tiny bit of my brain wonders if this was something that widely affected middle-aged men would articles like this still be written? Of course, then it would be under-reported because men don't whine about things like pain, right? Thanks for posting this. I hope it leads to an interesting discussion.
posted by teleri025 at 7:08 AM on January 15, 2008 [13 favorites has favorites]

What Henry C. Mabuse said. Seriously.

Now that they have broken the, we can make drugs for imaginary diseases, barrier. They should just go nuts and start making stuff like vampire and werewolf pills. Exorcism pills would probably sell like hot cakes.
posted by Mr_Zero at 7:08 AM on January 15, 2008

I read the article and NYT had no business whatsoever entering into the realm of "speculation" about whether the disease exists, because it's at least as legitimate as ADD, irritable bowel syndrome and low back pain as far as there being no definitive tests, causing disability, and unfortunately being used by a lot of twits to ulterior gain. My guess is that because it is predominantly a disease that strikes women, and typically requires a LOT of listening and empathy and handholding and has few useful tools, doctors dread seeing people with the condition. But saying it doesn't exist won't vanquish these people from your waiting room.

But that said, there's clearly something out there for which we have no defined testing that causes otherwise functional, healthy people to experience pain in a way you and I do not. Of the 2 or 3 dozen people I have with fibro (and I inherited them with the dx), I'd say 5 or 6 clearly make the disease real to me, in that they do not take pain meds except in dire situations, are fully employed, and manage most of it with diet, yoga, etc. Unfortunately there's thousands of people with the diagnosis who have histories of sexual abuse or other trauma or are simply very maladaptive to life and doctors throw this at them to get them to go away which makes the disease seem that much less real, in much the same way that some kids with "ADD" were/are raised in shitty households in front of televisions and go to bed at ten PM when they are seven year's old. Lyrica doesn't seem to help these people at all, but lots of other drugs that intensify sleep and modify pain reception sure do.
posted by docpops at 7:26 AM on January 15, 2008 [4 favorites has favorites]

Teleri, thanks for the comment and sharing your experience. Also, note to self: read the damn FPP before jumping in the thread! I agree that this is a good FPP. Thanks for taking the time to look at all sides.

Also: my first paragraph should be corrected with: "that's what it is, a VERY biased article under the guise of "news"."

Anyways, look forward to the more informed comments that might hop into this thread.
posted by symbioid at 7:28 AM on January 15, 2008

My two cents. Does fibromyalgia exist? It's a description of a symptom, not a disease.
An extended analogy would be irritable bowel syndrome (IBS). About 12% of people have symptoms corresponding to IBS. A study was done with a balloon inflated inside the large intestine. The level of inflation which was reported as pain in the subjects with IBS, was not considered painful by the control subjects. Now there are different interpretations of this. One is those with IBS are wimps (or nervous, neurotic, complainers, etc.) The other interpretation is that the same input is causing more pain (or that pain is more acutely felt) and if the control subjects experienced the same amount of pain, they would be complaining just as much.
There is no good treatment for IBS. So, enter the pharmaceutical companies. A disease with no good drug choice and 12% of the population as targets can make for a huge market. In 2000 two drugs were introduced, alosetron and tegaserod. Alosetron was almost immediately taken off the market for causing a potentially fatal side effect in about 1 in a 1000 people. (It returned to the market with a lot of warnings.) Tegaserod was heavily marketed and was a big money maker until it was taken off the market by the FDA in 2007 for increasing the rate of heart attacks. Tegaserod was always a marginally useful drug. In study after study between 8 to 10% more patients than controls reported improvement.
Why was it popular? Because of its heavy marketing. Madison Avenue plus drugs equals a toxic interaction.
This same paradigm is true for Alzheimer's drugs, obesity drugs and fibromyalgia. Common syndromes with no good drug choices. Drugs that get overprescribed and become more of a problem than a solution.
posted by dances_with_sneetches at 7:44 AM on January 15, 2008 [4 favorites has favorites]

You forgot the link with "the first credible evidence of a biological basis for chronic fatigue syndrome".
posted by shownomercy at 7:53 AM on January 15, 2008

++dances_with_sneeches. My problem with the Fibromyalgia diagnosis is that it seems to be a cop-out. You're a woman and you've got myofascial pain and neuropathy? Fibro! All done! A) It's all in your head, relax, do some more exercise. B) Here, try these anti-depressants. C) Oh, hrm, here, try these painkillers. I actually had a doctor prescribe me Celebrex, in my early thirties, despite a negative Rheumatoid Factor test.

If doctors really took time (and patients were persistent and pushy - which is hard to do when it takes more than a month to get into see most doctors these days and insurance won't cover most of the diagnostic tests you need), they'd find that there are more than likely underlying issues causing this pain- could be spinal issues, could be Crohn's, or Celiac, or Lyme, or MS, a systemic infection, or a simple vitamin deficiency (or, I've read, too many vitamins - B6 overdose). Any of these things, if left untreated (and especially the nerve damage), can cause serious repercussions the longer they go undiscovered. Or it could just go away when you accidentally cure the underlying cause (if infection, vitamin deficiency, additional pressure on the spinal nerves caused by weight or sedentary factors). Either way, I really think these drugs are bad news - a facile way of dealing with Fibro and a great way to make money.
posted by jenh at 8:29 AM on January 15, 2008

Also, for folks interested in this stuff, I highly recommend the articles linked here, especially "A Review of Myofascial Pain and Fibromyalgia—Factors That Promote Their Persistence."

Great post, jackbrown!
posted by jenh at 8:34 AM on January 15, 2008

If doctors really took time (and patients were persistent and pushy - which is hard to do when it takes more than a month to get into see most doctors these days and insurance won't cover most of the diagnostic tests you need), they'd find that there are more than likely underlying issues causing this pain- could be spinal issues, could be Crohn's, or Celiac, or Lyme, or MS, a systemic infection, or a simple vitamin deficiency (or, I've read, too many vitamins - B6 overdose). Any of these things, if left untreated (and especially the nerve damage), can cause serious repercussions the longer they go undiscovered. Or it could just go away when you accidentally cure the underlying cause (if infection, vitamin deficiency, additional pressure on the spinal nerves caused by weight or sedentary factors). Either way, I really think these drugs are bad news - a facile way of dealing with Fibro and a great way to make money.

Facile, indeed.

Your sweeping assertion that these patients have an underlying missed diagnosis means that either you're speaking from a vantage point of having had the good fortune to detect the missed condition in multiple FMS patients or you're just full of so much shit.

Possibly you were told you had FMS but then went on to find out you had something potentially serious. In that case, by all means share your story and concerns regarding your missed diagnosis, but don't mark yourself as a jackass by implying that some majority of these people with years of symptoms have an underlying condition, especially when every one you mentioned is progressive and would ultimately disable them (with the possible exception of mild celiac disease).
posted by docpops at 8:57 AM on January 15, 2008 [1 favorite has favorites]

Man, I am so close to making millions on my new drug for Mildly Itchy Syndrome.

*files provisional patent*
posted by M.C. Lo-Carb! at 9:07 AM on January 15, 2008

It's really not a stretch to believe that people have widely differing pain tolerances, especially if you've had any exposure whatsoever to BDSM. I know someone *coff coff* who can endure belt whippings for hours that make grown men cry.
posted by desjardins at 9:08 AM on January 15, 2008

jenh, while I initially liked where you were going with your reply, it ended with some faulty judgements. I do feel that there is an overreliance on the "hysterical middle aged woman" approach, sometimes. There are plenty of doctors who do engage in such behavior (sexist as it is). It's also why it's so hard to get heard, because if you don't say anything, no-one believes you, but if you do, and try to get it recognized, you're just some bat-shit insane woman. So how do you fight and get heard?

My girlfriend, for instance, who was diagnosed over 10 years ago, initially presented pain issues as far back as her childhood. However, after struggling off and on through the years with depression and pain, going in and out of school or a work environment or living at home with her mom temporarily while out of both, she was finally back in school, doing well, and working on the side. That was her status when we met. To save money, she dropped out of school for a bit and worked full time, for over a year...

Then one day, something happened. Pure dizziness. Non-stop vertigo 24/7. We took her to the Urgent Care when it didn't subside after a day. The doctor said she had "Disequilibrium Syndrom" (uhh, yeah, way to go, schmuck), and gave her some Dimenhydrenate (IIRC), or something like that... It still persisted, she went in to see her doctor. Fortunately, her doctor is a very good doctor and listened and did everything.

From some sort of inner ear test (pouring fluid in the air to check for disturbance -- she ended up having the strongest reaction they'd ever seen in that... to the point of vomiting), all the way to having multiple MRI's over a period of a few years. She got a referral to a neurologist as well... Nothing. The best she can do now is see a doctor who specializes in Fibro. While she's glad she has some relief, and found a combination of meds that works, she's concerned that tolerance will some day limit the amount of meds her doctor would be able to prescribe. The good thing is that she has been able to not have any sort of issues with opiate addiction. She always takes only the prescribed amount and gets refills only when she's due for them, so she's never been seen as a seeker. That's her biggest fear, due to our current political and medical climate (and the horrible actions of seekers in manipulating doctors)... The pain and other stressors are relieved, but she's still dizzy 24/7. She explained it once with a commercial of some juice, where the mom takes the juice outta the fridge, and shakes it. They have the camera from the vantage point of juice. She said to me when it came on "THAT is what it's like for me day in and day out."

Anyways, point being, they tried their damnedest to find what's causing her symptoms and found nothing causative, hence the reason for lumping it in with the fibro which she was already diagnosed with. I do agree that people with fibro should have tests to see if there is something underneath, and has known treatable options before lumping the fibro label on them. But if at a certain point, nothing shows up, and the patient shows indicators that match the symptoms of FMS, then that's what you have to go with.
posted by symbioid at 9:17 AM on January 15, 2008

This reminds me of The Onion headline from Our Dumb Century about halitosis: "Listerine invents disease, discovers cure."
posted by ericbop at 9:19 AM on January 15, 2008

I've been diagnosed with CFS and fibromyalgia.

There seems to be a palette of autoimmune symptoms common in middle-aged women, especially. It's insidious: it's painful to exercise, and you're exhausted all the time, so you exercise less, and gain weight, so you feel worse. You feel like crap a lot of the time. You can't do stuff that you love like riding a bike, dancing and hiking. It makes you cranky, and pretty soon being sick a lot of the time leads to a lowgrade chronic depression. But you're a middleaged woman, and the medical profession, the press and your family all blow it off as emotional weakness.

I also have other autoimmune symptoms that are document-able, so I got taken seriously. Neurontin helps with the nerve pain. The other thing that helped the most was paradoxical: I started walking 15 minutes every day, rain or shine. Some days, my feet hurt so much after 10 minutes that I want to cry, but overall my health is much, much better and I'm in less pain.

My health issues are real. Interestingly, the best treatment has been non-medical. My friend with fibromyalgia who has pursued medical/pharmaceutical treatment is on disability, has limited mobility and a difficult life. Her doctors take her symptoms seriously, but she stays inside and inactive. As long as medical research is driven by profit, there will be new drugs for illnesses that respond well to non-medical treatment.

Diabetes is an excellent example. It's on the rise due almost entirely to obesity. Many diabetics would be much healthier, consume a lot less medical care, not to mention living longer, more comfortable lives, if they exercised and ate properly. Heart disease? Not funny at all. Affects middle-aged men who spend too much time on the couch eating too much bad food. Why aren't y'all cracking wise about diabetics being emo and heart attack patients being whiny?
posted by theora55 at 9:38 AM on January 15, 2008 [5 favorites has favorites]

The term dolorimetry is fantastic. I'm going to patent a dolorimeter.
posted by theora55 at 9:52 AM on January 15, 2008

Why aren't y'all cracking wise about diabetics being emo and heart attack patients being whiny?

Because you can measure blood sugar and cholesterol levels with SCIENCE.
posted by pieoverdone at 10:17 AM on January 15, 2008 [1 favorite has favorites]

At one point, science wasn't able to measure those things, yet they still existed. Perhaps the same will happen for fibro.
posted by agregoli at 10:23 AM on January 15, 2008 [4 favorites has favorites]

Here's more anecdotal evidence that fibro is not just weak willed complainers whining about minor aches and pains. My mother is diagnosed with fibro and CFS, but she is not the whiny or weak willed type. She put herself through college in 4 years while working full time at a diner. She fell down a flight of stairs, breaking her back, then calmly told me (an 8 yr old) how to get help. This is not the kind of woman to lie about pain for drugs or attention. Doubting the exact nature of the disease is fine. Doubting that these people are experiencing real pain is not OK.
posted by mrgoldenbrown at 10:29 AM on January 15, 2008 [5 favorites has favorites]

I find it ironic and quite annoying that I've always had a fairly high tolerance for pain, until about two years ago. As a kid, I broke my nose at least three times without even realizing it. But now, stubbing my toe makes me want to cry.

I understand how it's easy to say that fibro is just a diagnosis for a whole bunch of shit that may be unrelated and random, but in my case the doctors eliminated all the other options and this was the only one that was left.

There have been a couple of studies that induced fibro-like symptoms in patients by sleep deprivation, of course, the symptoms go away when the patients are allowed proper sleep again.

Short answer, there's a lot of shit out there that goes wrong with the human body and makes people "sick". Just because there's not an easy test for it or something that we can point to *right* now to explain it, doesn't mean it doesn't exist. Hell, we didn't know what caused cholera for quite some time. Go ahead, call me emo. But let's see how butch you are when it feels like someone's trying to pry the muscles off your bones 24/7 and you hurt so very much you can't think straight.
posted by teleri025 at 10:45 AM on January 15, 2008 [2 favorites has favorites]

"The diagnosis of fibromyalgia itself worsens the condition by encouraging people to think of themselves as sick and catalog their pain."

You could substitute "fibromyalgia" with "sciatica", "herniated disc", migraine", even "charlie horse"..

No one doubts the pain is real. Where is the pain coming from, though?

The brain. The brain is helping you distract your attention away from stress, issues, anger, depression, etc that you may have.

Google this guy. He has it all figured out. Seriously. I am walking proof of it.
posted by wfc123 at 10:49 AM on January 15, 2008

Isn't this what Ethereal Bligh was diagnosed with? I'd be interested in his perspective, assuming he still reads this.
posted by klangklangston at 10:53 AM on January 15, 2008

He has a hereditary disease that undermines the integrity of cartilaginous structures.

I have self-diagnosed, very mild fibromylagia symptoms, which I understand more greatly afflict people with anxiety disorders, like me. I'm not emo about it, but it is a pretty irritating thing that the symptoms flare up when I don't complete my final sleep cycle, so if I'm somewhere noisy, I have to wear earplugs to bed or I feel sort of itchy and crampy all day. Make me want some Soma. Pot? Noooo noo nooo, makes it way worse.
posted by Ambrosia Voyeur at 11:10 AM on January 15, 2008

A tiny bit of my brain wonders if this was something that widely affected middle-aged men would articles like this still be written?

Bingo!
posted by caddis at 11:13 AM on January 15, 2008 [1 favorite has favorites]

I have a close friend who was diagnosed with fibro some years ago. Recently she switched doctors and the new doc tested her for a number of things, including Vitamin D.

The test results showed that she was severely deficient in vit D and she is now being treated with mega doses of D. She is thrilled that the pain is going away. Her pain started in her legs and spread to her upper body over the course of two years. The pain has disappeared in her hands and arms after about a month. Her legs are responding more slowly but they are getting better.

The symptoms of vit D deficiency are similar to fibro and there are recent studies relating it to heart health, so one might be skeptical about the "vitamin of the month" approach. Interestingly my friend had what the doctors guess was a TIA last year that, in retrospect, may have been caused by the vit D problem.

I did find one paper (pdf) that suggests that many times fibro may in fact be vit D deficiency.

I am not implying that this is *the* cause of fibro, which I have thought to be a name given to a group of symptoms for which no one has found a cause. And I am clear that doctors not knowing the cause does not mean that it isn't very real and a disease of its own.
posted by Red58 at 11:14 AM on January 15, 2008

I also have other autoimmune symptoms that are document-able, so I got taken seriously.

I have a relative with fibro who's in exactly the same boat. He has a "real" autoimmune disease, so even skeptical doctors take his symptoms seriously. It also probably helps that he's male, which means that doctors are less likely to write him off as hysterical.

I've always wondered whether fibromyalgia was in some way autoimmune and if part of the reason that doctors didn't understand it was that they basically don't have a very good handle on autoimmune diseases. There are a lot of conditions that are thought to be autoimmune but that don't show up in the blood tests that are used to detect autoimmune diseases. People with autoimmune inner ear disease usually don't have wonky blood tests, but nobody doubts that the condition is real, because most people with it end up demonstrably deaf or hard of hearing. It's just not that hard for me to believe that there would be a similar autoimmune disease that would be even harder to detect because the symptoms it created weren't externally observable. We know that there are autoimmune diseases for which there aren't reliable tests. We know that many autoimmune diseases produce symptoms like pain and chronic fatigue. Why is it so difficult to believe that there are autoimmune diseases that primarily manifest as pain and chronic fatigue and that don't show up on tests?

I also think that part of what's going on with fibromyalgia is that it's caught in the middle of some conflicting cultural shifts and medical insights. For instance, there's rising awareness that psychological strain can cause physical symptoms, and at the same time people are newly sensitive to the medical profession's tendency to under-treat pain and to ignore and diminish women's symptoms. Those insights pull in different directions.
posted by craichead at 11:17 AM on January 15, 2008 [1 favorite has favorites]

delmoi writes "It seems like drug companies are not doing a very efficent job of drug discovery if this is the stuff their coming up with new drugs"

The thing with drug discovery is that it's really, really difficult. The process is inherently inefficient and incredibly expensive. And since there's so much invested in the current infrastructure, pharma companies are very hesitant to move to new technologies. For companies in a high-tech, research-driven field, drug companies are amazingly conservative about changes to their R&D infrastructure.
posted by mr_roboto at 11:22 AM on January 15, 2008

ADD's next
posted by matteo at 11:46 AM on January 15, 2008

A tiny bit of my brain wonders if this was something that widely affected middle-aged men would articles like this still be written?

I thought the same thing at first but now I'm thinking that while women are told it's "all in their head," men would probably be told, "Just suck it up."
posted by agregoli at 12:00 PM on January 15, 2008

From an ethical standpoint, if a patient presents with pain, ultimately there will be an attempt to "treat"--the underlying cause of the pain, snf/or the pain itself.

Generally speaking, doctors proceed from the standpoint that they accept what the patient says regarding their pain. The physical exam and tests help to understand what's causing the pain. Without question, sometimes the patient's complaint and the findings diverge.

If people are treated and subsequently experience amelioration of their painful symptoms--great. If they do not, as often happens, they will try something else. But to deny that certain individuals even perceive the pain they are complaining of, seems to undermine a heck of a lot more than the likelihood that fibromyalgia exists or does not exist.

Standard treatments of questionable efficacy abound. If we were to eliminate an entire diagnisis--say the common cold--then no "cure" for it would ever be a failure.

That said, I would like to see less direct marketing to patients. If it's true that American drug companies spend more on advertising than R&D, that's an issue worth examining.

Instead, we are wondering whether treatment of questionable efficacy for a possibly non-existent condition results in what? In publicly funded malingering? In further bloating the healthcare system? In more annoying ads?
posted by subatomiczoo at 12:42 PM on January 15, 2008 [1 favorite has favorites]

Know it's getting late in the thread, but I wanted to throw my two cents in.

I've been dealing with chronic pain since early puberty. In addition to osteoarthritis and the ankles of a 70-year-old, I've been diagnosed with Fibro. Whether or not the disease is "real" in the sense that diabetes or erectile dysfunction are, the treatments I've been given as a result of this diagnosis have greatly improved my quality of life. The only reason I'm not taking Lyrica right now is because I can't afford it; I tried it for a month or so on a doctor's free sample and it knocked about half my pain and fatigue right out. With my doctor-prescribed opiates and sleeping pills, and doctor-recommended-but-not-prescribed, uh, natural medicine, I can function in a manner resembling that of a normal human being. Without them I'm shivering in pain and take five minutes to get down the front steps to get the mail. I'm deeply suspicious of woo-woo, especially medically-related woo-woo, but my own experiences with fibro drug treatment have been mostly positive (except for when I was taking prednisone. Man, did that suck).

So basically what I'm trying to say is that if you say that fibro sufferers are just "emo" or "faking it" or "being melodramatic" or should just "suck it up" I will beat you about the head with my cane.
posted by jtron at 1:42 PM on January 15, 2008 [4 favorites has favorites]

And if you've really got a bug up your ass about questionable medical marketing, how about taking a look at the homeopathic hucksters, magnet salesmen, and crystal pimps that are siphoning money from people who just want their suffering to end?
posted by jtron at 1:44 PM on January 15, 2008 [1 favorite has favorites]

theora55: I, too, am taken with the concept of dolorimetry. Apparently there's lots of dolorimeters out there including a Sonic Palpometer (palpometry!) But, as the article you linked says, dolors (dolorics?) are not as important as Tender Points. And that is another term I'm happy to learn.
posted by CCBC at 1:55 PM on January 15, 2008

Well I think this ended up being an educational discussion for me at least. As far as the existence of a discrete clinical entity we should call Fibromyalgia, I guess I'm still agnostic, although I lean toward thinking it's probably a catch-all for 'Doctor-can't-figure-out-pain-source' or even in some cases 'Doctor-doesn't-want-to-bother.' Which is not to say that I doubt that Jtron or Symbioid's lady or Docpops' presumed patients are experiencing very unpleasant symptoms, just that doctors telling them 'you have fibromyalgia' is equivalent to the ancient Greeks saying that wood and oil burned because they contained phlogiston. At wfc123's suggestion I am going to have a look at Sarno's The Divided Mind, the Epidemic of Mindbody Disorders, since my interest in this topic has been raised.

Finally, I will echo subatomiczoo and jtron in saying that I think there should be no marketing of pharmaceuticals (or non-medical/ naturopathic cures) to patients at all. Information (websites with indications/ contraindications/ clinical studies, etc) should certainly be freely available to the public and to interested patients but anyone who thinks advertising of drugs like Lyrica to patients contributes to their net health is kidding themselves. Not even the patient/activists on the discussion boards we looked at thought the advertising was helpful.
posted by jackbrown at 2:40 PM on January 15, 2008

Finally, I will echo subatomiczoo and jtron in saying that I think there should be no marketing of pharmaceuticals (or non-medical/ naturopathic cures) to patients at all.

Yes, we should trust this function only to doctors who just know so much more. I mean, yes they may be stretched thin by modern health care practice and only have five minutes to contemplate your case, but they are expert and all that internet research and manufacture info that you arrive with only subverts their total authority. No, an uniformed patient is much easier to deal with. Best to kill these direct to patient ads.
posted by caddis at 7:35 PM on January 15, 2008

Wonder Drug Inspires Deep, Unwavering Love Of Pharmaceutical Companies
posted by Octoparrot at 8:07 PM on January 15, 2008

If doctors really took time (and patients were persistent and pushy ... they'd find that there are more than likely underlying issues causing this pain

I don't believe I've ever heard from or met an FMS/CFS patient who didn't have various other disorders, symptoms, diagnoses, and what not. Now, are they "underlying" conditions, symptoms of the FMS, or something else not directly related? People have their theories, of course, but generally speaking, they acknowledge that they just don't know. It could be any of the above. So you're saying that they should be looking for underlying factors; I'm saying I doubt you could find one who isn't, though whether the conditions are in fact "underlying" is an open question.

The test results showed that she was severely deficient in vit D and she is now being treated with mega doses of D

I can't tell you how many times I've read similar stories about other supplements and herbs. For me, it was a combo of magnesium and malic acid (a pretty popular treatment in alt.med circles). If I can figure out a way to handle the side effects, I'll be in fairly decent shape. (The mag/malic seems to aggravate my cervical dystonia and other [I suspect closely related] symptoms.) And that, I think, is one of the reasons you get otherwise intelligent people arguing that there is no one disorder that can be labelled Fibromyalgia. How can it be a single disease if every patient who improves does so on a different treatment?

At present, I don't have a very good answer for that question. My suspicion is simply that, at or near its root, the disorder involves an inability to turn food (glucose) into energy (ATP). There is some research that supports this theory, but it's not anywhere close to a slam dunk. I could certainly be wrong. It's just that this is, by far, the most rational explanation I've yet heard. And since there seems to be about six million different things that could explain this breakdown in energy production, maybe it makes sense that six million different things have helped.

As for the "it's all in your head" crowd...

I just wish they could follow me around for about six months. I wish they could see the shit I go through just for the privelege of having some guy in a white coat look at me like I'm a nut job. I've been kicked out of doctors offices, lied to, written off, ignored and I don't know what else.

I began listing all the stuff I have to deal with in order to get some kind of possibly effective treatment, but I quite about three paragraphs in; I just don't have the energy. I'll summarize by saying that if I weren't really sick, I'd just sit on my ass, show up for the occasional doc appointment, get some pills, and resume sitting on my ass. I wouldn't go through the treatments, the experiments, the doctors, the out-of-town appointments, the strategy sessions, the expense, the internet searches, the "wow, what a nutjob" looks, the waiting, the second guessing and all the other horseshit. For christ sake, I'm letting this dude shoot my neck up with toxins from botulism bacteria. Either I've got a serious problem I'm trying to solve or I'm such a raving, delusional paranoid that there's no way I could put together a coherent paragraph.
posted by Clay201 at 8:27 PM on January 15, 2008 [3 favorites has favorites]

DocPops, I appreciate your perspective as a medical professional, but not the abusive nature of your post. I've personally known people with most of the described issues diagnosed with fibro (or womanly "sensitivity") - Vitamin D deficiency, pinched nerves due to spinal issues, Crohn's. In the Crohn's case, there were years of nerve and intestinal damage that can't be reversed now. Not to say that there *aren't* plenty of doctors out there willing to help a person get to the bottom of it (I'm batting 1 for 3, so that's not too bad, I guess...) -- but this article from the NYTimes doesn't help the matter any by facilitating the idea that it's a "made up disease." And I really believe the diagnosis itself keeps people from actually being active again.

Personally, I'm still working with my doctors to figure out the root cause of the sudden onset of pain 2 years ago to my own expense, but know this - it's not in my head, it's not in most of these people's heads. I'm not *more* hypersensitive to pain, I am actually *less* sensitive to pain because I've gotten used to it. This pain is not normal, not the pain you feel on the day-to-day of getting older. I can deal with it, but it's definitely not your run-of-the-mill achiness. I don't think most people who get this stuff are "whiny complainers" -- most folks shut up about it because they *don't* want to be seen that way unless they're talking to their doctors - folks who should know everything that's going on in order to best help you.

Walking or swimming *definitely* helps (ice skating apparently not, I've found!:)), but it's a scary thing not knowing why you hurt (and I'm sure not pleasant for doctors being unable to get to the root of it), and I really worry that folks get diagnosed as having fibromyalgia, and underlying causes of the myofascial pain and neuropathy get missed, causing more permanent damage (that's at least my biggest fear for myself right now).
posted by jenh at 8:49 PM on January 15, 2008

I don't believe I've ever heard from or met an FMS/CFS patient who didn't have various other disorders, symptoms, diagnoses, and what not.

*raises hand*

I have CFS, ever since a severe onset in late 1996, and I am in almost all other respects very healthy. (I'd say "all other respects" if a van hadn't popped me out of a crosswalk a few years ago. I didn't land so well, which put a crimp in things.) In fact, if you discount the CFS, I'm healthier than most people my age I know -- my weight is more-or-less appropriate for my height, my blood pressure's close to ideal, my cholesterol's gorgeous, my heart rate is good, and as best as I can tell I have no particular mental health issues. I was even blessedly pain-free until that van smacked me around. Now that I've found exercises I can do without unfortunate repercussions, I'm strong, flexible, and fairly balanced -- kind of athletic, actually, in a limited context.

So, no, I don't have a long list of various other disorders, symptoms, diagnoses, and whatnot. It's pretty much just the CFS.

And I'm kicking CFS's butt. Things may work differently for people who are experiencing mystery pain, but for me, having the diagnosis helped: it enabled me to do some reading about the syndrome, evaluate my health care providers' (and others') recommendations more critically, and generally take a more thoughtful role in my own recovery. While a CFS diagnosis may cause some patients to throw their hands in the air and give up, for me it had quite the opposite effect. It's true that it was somewhat disappointing initially (oh, how I was hoping for a relatively simple thyroid problem! Or any of the other umpty-ump things for which I've been tested!) but it was galvanizing, too, and helped me organize my thoughts and get my head screwed on straight. I had been over-active, trying to power through the exhaustion on pure bullheaded force of will; some CFS education (and a good doctor) convinced me to turn it down several degrees and sneak up on my physical limits instead of flinging myself at them. Worked a treat.
posted by sculpin at 11:12 PM on January 15, 2008 [2 favorites has favorites]

I have to say, though, I'm sympathetic to the positions of jenh and fourcheesemac. I don't think that all FMS and CFS patients have some other underlying missed diagnosis, but I'd be surprised if a significant portion of them did not.

I do actually appear to have CFS, to the best anyone can determine. But the first doctor who diagnosed me with it, in my opinion, didn't dig enough to make that diagnosis with as much confidence as I would now consider appropriate. For example, I think now that it would have been a good idea for me to have an MMA. No such luck.

That doctor thought that CFS was a cryptic variety of depression -- not just that CFS could be usefully treated with antidepressants, but that it was itself actually a form of depression. It probably didn't hurt that throwing a series of useless-to-me antidepressants my way was not going to raise the kind of red flags at the HMO that a more extensive series of tests would. (I probably should have walked when she told me not to tell anybody that I had CFS "because nobody loves a whiner." Jeez.) And sure -- I wouldn't be surprised if a lot of the folks she diagnosed with CFS did have depression. It's not like it's rare.

Well, a stopped clock is right twice a day. Thing is, that doctor was such a true believer in CFS (and her own particular hypotheses about it), and so casual about diagnosing it, that imho she was bound to have applied that diagnosis to people she ought not to have. In addition to likely saddling some of her patients with a misdiagnosis, it gave her the impression of having a great deal of clinical experience with CFS which she almost certainly did not have.

So I switched doctors. The next one looked at the list of tests that had been done, said, "Hmm" in a "Let's not say anything nasty about our colleague" way, and did a lot more digging before she was satisfied.
posted by sculpin at 9:16 AM on January 16, 2008