Note that we have a Staff Report, by our very own Paperback Writer, on this topic. (It’s actually not due to appear until tomorrow, but what the heck):
Because we have the words “diabetic” and “epileptic” If somebody had lung cancer, I might refer to them as a “lung cancer sufferer” or a “victim of lung cancer.”
That’s a slightly different question. I didn’t use the phrase “fibromyalgia ‘sufferers’”, but I imagine the quotes reflect some doubt that fibromyalgia is “real” (whatever that means).
I expect that anyone going to a doctor complaining of unverifiable pain gets treated with suspicion. Are migraine headaches verifiable? I would imagine one could verify them by measuring the person’s blood pressure.
The only way to diagnose migraines is by looking at symptoms. There’s no objective test that can verify or falsify the presence of migraines, like there is for stuff like broken bones, AIDS, fungal/bacterial infections, or some genetic disorders.
This is pretty much exactly like fibro. Nobody knows exactly what’s going on with this disease, so nobody can devise a way to test for it. The earlier comment some poster made about a link between fibro and muscular abnormality in autopsies is incorrect, as far as I know.
If anyone wants my 2 cents, I don’t think fibro is understood enough to properly diagnose in many cases. Two people with completely different symptoms can both be diagnosed with fibro, and it’s just a convenient way for a doctor to say “I’m sorry, but I don’t know what the fuck’s wrong with you.” People just can’t accept the fact that doctors sometimes have no clue what’s wrong, and there’s nothing they know of that can help. Doctors hate telling anyone “every test I run is negative, and I’m out of treatment options. I’m sorry, but you’re just going to have to live with whatever is wrong with you.” I don’t think fibro is a real disease. It’s just a label for people who doctors can’t help because they don’t know what’s wrong. I think if we could have omniscience for a few minutes, we’d realize that fibro cases are not necessarily linked by one single common disease.
Disclaimer: I’m not a doctor or a fibro sufferer, so my opinion about this isn’t worth much.
Quick question: can anyone name a disease or “disease” or syndrome or “syndrome” of unknown etiology and difficult objective diagnosis that is found (or “found”) significantly more frequently in men than in women?
Because I can think right off the bat of:
Fibromyalgia
Restless leg syndrome;
Chronic Fatigue Syndrome
TMJ
Morgellon’s Syndrome
which seem disproportionately to be reported/diagnosed/claimed in women.
Absent some specific reason why women’s physiology or lifestyle factors would make them uniquely susceptible to the most nebulous yet “really objectively physical and not psychological” “diseases,” whereas ailments that are found disproportionately in men (hypertension, heart disease) are readily quantified and easily explained by the actions of testosterone, occupational stress, etc. – why wouldn’t Occam lead me to say that hysteria, which the Greeks had essentially figured out 2,000 years ago, was a sufficient explanation?
This article’s usefulness is substantially compromised by its one-sidedness.
The author does not acknowledge (except to suggest that doubters are ill-informed fogeys) the substantial number of researchers and specialists in rheumatology and pain disorders who do not believe fibromyalgia is a defined entity.
*"Dr. Frederick Wolfe, the director of the National Databank for Rheumatic Diseases and the lead author of the 1990 paper that first defined the diagnostic guidelines for fibromyalgia, says he has become cynical and discouraged about the diagnosis. He now considers the condition a physical response to stress, depression, and economic and social anxiety.
“Some of us in those days thought that we had actually identified a disease, which this clearly is not,” Dr. Wolfe said. “To make people ill, to give them an illness, was the wrong thing.”
In general, fibromyalgia patients complain not just of chronic pain but of many other symptoms, Dr. Wolfe said. A survey of 2,500 fibromyalgia patients published in 2007 by the National Fibromyalgia Association indicated that 63 percent reported suffering from back pain, 40 percent from chronic fatigue syndrome, and 30 percent from ringing in the ears, among other conditions. Many also reported that fibromyalgia interfered with their daily lives, with activities like walking or climbing stairs.
Most people “manage to get through life with some vicissitudes, but we adapt,” said Dr. George Ehrlich, a rheumatologist and an adjunct professor at the University of Pennsylvania. “People with fibromyalgia do not adapt.”*
In a recent paper published on the subject of FM, Dr. Wolfe noted that “We found no clinical basis by which FM may be identified as a separate entity.”
The staff report claims that there are microscopic changes in tissue linked to fibromyalgia. I have not heard of any consistent and reproducible changes. There is a recent small study out of South Korea that reports difference at the electron microscopic level, but apart from the limited study group this analysis is flawed by the much smaller size of the control (non-FM) group studied relative to FM patients (meaning less opportunity for the observed features to be seen in “normals”). And others have concluded that there are no pathologic differences in muscle between FM and non-FM populations.
Again, this doesn’t mean that people with FM-like symptoms don’t need therapy of some sort. The lack of a definable disease entity should make us cautious about assigning someone an illness and encouraging the use of powerful, expensive but less than overwhelmingly effective drugs to treat it.
If I had a link to a specific study, I would post it. I would not be surprised if the source of my husband’s doctor’s assertion is the same as that of the staff report though. My husband reports he used the phrase “On close examination” which mean examination under electron microscope.
You know, some of the symptoms of migraines are even loopier than Fibro. I now have extensive visual distortions right before the migraine pain. The first time that happened, I had a blind spot as big as half my visual field and I saw strange shapes of light which moved and waivered in front of me. I called the the eye doctor, who seemed alarmed, and he saw me immediately. While I was waiting, I grew nauseated, and the headache came. I vomitted shortly before he examined my eyes. After I told him of the headache, he was quite a bit less alarmed and told me, that it sometimes happens with migraines.
The only tests given to me showed that my eyes and everything else they could meaure was normal, and while I know of people who have been accused of feigning migraines, I have not heard doubt that migraines exist. I have read that they are a bit of a mystery, and not too long ago no one had been able to do a brain scan during a migraine, so there was little or no solid evidence. If I recall correctly, that changed when there was a young man who experienced migraines at 2:00 pm every day was examined throughout the process.
Well migraines differ from fibro in a number of different ways:
[ul]
[li]They have a long history- we’ve had clear accurate descriptions of most diseases for hundreds of years before we knew what caused them. You’d think something as debilitating as fibro would have left a long historical trail. [/li][li]They don’t have huge associations with quack medicine, other suspicious diagnoses, etc. Most migraine sufferers don’t “also have” multiple chemical sensitivity, multiple food allergies, etc. Indeed, most migraine suffers don’t make a big deal out of it at all.[/li][li]They don’t affect such a narrow population. And the symptoms are rather consistent, though they are varied. [/li][/ul]
One thing that is really strange to me is how many fibro sufferers avoid doctors. Doctors, if anything, err on the side of overdiagnosing. Sick people is how they make money. I can’t think of any other disease that isn’t just crazy where people avoid doctors like that.
What is my dog in this race? I have a friend who suffers the symptoms of fibro, though I don’t think he’s ever called it that. He’s spent his whole life- years- waiting for a day where he feels better. He keeps hoping he can find the magic supplement, the magic diet change (the newest one is no cheese), the one magic thing that is going to make him feel better. Meanwhile he mopes in his room, waiting for the one day when he isn’t tired, when he isn’t in pain, to come. That is the day he will look for a job. That is the day he will try to finish school.
The dude is just depressed. I know him well enough to say that. And as long as he is “sick” he doesn’t need to do the actual mental work it’s going to take him to get his life on track. And as long as he is “sick” he can focus on controlling externalities (what he eats, etc.) as a substitute for dealing with what is going on inside him. And it’s fucking up his life. He’s wasted his best years to this. I want to strangle whoever convinced his that the solution to his problems was finding the right supplement.
Now I have no doubt he is in pain. I also have no doubt that a large amount of this pain is the same pain we all feel. I also know that his pain seems to go away- or at least not be debilitating- when he actually manages to stir up some passion about things and gets out of the house to do stuff.
Anyway, I think the “you are sick and just need to find the right medicine” idea isn’t doing him any good and is well on the way to ruining his life. He needs to be steered towards appropriate therapy for his depression, not towards some "we hate doctors’ victim’s community.
Isn’t it just “we hate doctors when they stop having the time of day for us?” That Theodore Dalrymple article I posted in one of the other threads (where he discussed the Indian ladies suffering from TBP i.e. “total body pain,” which sounds none too dissimilar to “fibro”) seems to suggest they love slipping back to the hospital – so long as they can keep finding new doctors who haven’t basically exhausted their patience, and the battery of modern diagnostics, and sent them away.
Fibromyalgia is a great illustration of how we humans indulge in magical thinking: if I can name it I can control it.
What it is is a shorthand to describe a set of symptoms that travel together - particular muscle spasms and a self-perpetuating pain complex - sometimes associated with depression, sometimes not, sometimes with hypermobility, sometimes not, sometimes with TMJ and sometimes not. The central feature is that it is a chronic pain syndrome and those are hard to treat. Naming it gives little power over it. Each case instead needs to look at all possible contributors to the pain complex that may or may not be extant in that individual case and treat all at the same time.
Aw heck. I knew I left out two “ailments” that disproportionately “afflict” middle aged women.
This will be the first, and I very much hope the last, time I link to a cite containing both Jenny McCarthy and Oprah Winfrey, but for a perspective on the much-discussed emphasis on “suffering,” see:
[quote=“even_sven, post:27, topic:467142”]
Well migraines differ from fibro in a number of different ways:
[ul]
[li]They have a long history- we’ve had clear accurate descriptions of most diseases for hundreds of years before we knew what caused them. You’d think something as debilitating as fibro would have left a long historical trail. [/ul][/li][/quote]
That’s a valid point, but if FMS is caused by exposure to modern chemicals or other enviromental triggers which didn’t exist in the past then you wouldn’t really expect it to go back to prehistoric times. Another possibility is that historically it was misdiagnosed but modern testing has made it possible to be more accurate about ruling out other diseases.
I disagree. Food triggers are well documented in migraine sufferers, as are sensitivities to chemicals and fragrances.
This article says
Another site says
Wikipedia gives a list of triggers taken from MedlinePlus Medical Encyclopedia
Stress, food allergies, changes in sleep patterns… You’ve got to admit, some of those sound quite similar to the list of triggers for fibromyalgia. The reason I raised migraines was not just because it’s another pain condition that can’t be effectively tested for, but also because a doctor once remarked to me that fibromyalgia was like full-body migraines.
From this link:
As for the comment about the association with quackery… I don’t know where I could even begin looking for cites for or against this, but to go to my personal experience (as I will again and again in this post), I have no faith in alternative medicines and have never willingly sought out alternative treatments (full disclosure: I did go to a naturopath and to an acupuncturist at the urging of my parents). I have been sent, unsolicited, a great deal of “information” on “Miracle Cures!” that are supposed to work on everything from dry skin to terminal cancer by people who are into that kind of thing. Ironically, the worst of them suffer from, you guessed it, migraines!
I do have to add that it’s not really fair to criticize people with fibromyalgia for falling for charlatans who promise them cures when traditional medicine shrugs its shoulders.
That’s a fairly subjective statement. In my personal experience, I’d have to disagree. Migraine sufferers of my acquaintance have been predisposed to taking to their beds for days on end, taking a lot of time off work because of their illness, complaining about headaches, smells, noises, lights, their vision problems… is that what you call “not making a big deal out of it”? From the first link I gave above
Migraine causes disability in 80% of sufferers, has a negative impact on family, social and working life and diminishes work capacity, and causes anxiety and inability to cope. Both migraine and fibromyalgia sufferers experience pain that is severe enough to impact their daily lives, yet only those with FMS seem to be attacked for allowing their illness to affect them.
[quote]
[ul]
[li]They don’t affect such a narrow population. And the symptoms are rather consistent, though they are varied.[/ul] [/li][/quote]
I can’t comment on the narrow population affected, although it’s interesting to note that both affect more women than men (female migraine sufferers outnumber males 2 to 1, 90% of people with fibromyalgia are female). I think fibromyalgia does have a wide variety of symptoms associated with it, but there are still a lot of consistencies. It’s still not well understood and unlike migraines, as you pointed out earlier, it hasn’t got a long history of study behind it.
I don’t know any person with fibromyalgia who didn’t begin by practically living at the doctors and having every test under the sun. That was my own experience for the first few years of living with it. There’s only so much a doctor can test for, suggest and try. After that, what are you supposed to do? Stare blankly at each other across his desk until one of you thinks of a cure? I still see my doctor whenever I have anything else he can actually help with, but I no longer go to him for treatment for fibro because we’ve exhausted that avenue. If something new comes to his attention, I trust he’ll raise it with me. Meanwhile, I concentrate on other things in my life.
He surely is depressed: being in constant pain will do that to you. Now, there comes a point when your state of mind negatively affects your health because you’re too depressed to do things that are good for you. That doesn’t mean that the chicken came before the egg, or that the depression came before the illness. In the early days of fibro, the syndrome kicked my ass every time I overdid it and my determination to “fight it” and “not let it control me” simply resulted in more pain, more fatigue, a less normal life. Talk about your aversion therapy. Eventually, I stopped fighting, stopped trying and lived a quiet, boring but less agonizing life. Then that caught up with me too, and I began dealing with pain that was more related to a lack of exercise and muscle weakness than FMS. In time, though, I reached the point I’m at now: still not the most active person in the world but fitter and healthier than I was. I am still overly cautious about resting when I feel like I’m coming down with something, but experience has taught me that a day of rest now might head off weeks of problems later. The rest of the time, I try to keep active and not add to my problems by being grossly unfit too. Part of FMS is learning what your limits are and how to push them without going too far. In many ways, this echoes the quote above about migraines and how sufferers fall into a cycle of avoidance because of fear of the next attack.
And that’s part of the thing that makes the condition so frustrating both to people who have it and to people who know someone who has it: just because he can do this today, doesn’t mean he’ll be able to tomorrow. It waxes and wanes. Sometimes he can do things because he feels better than usual, sometimes he does them anyway because he really wants to but then pays the price over the next few days (or weeks, or longer).
I briefly belonged to an FMS support group, and it was great. We did NOT sit around bitching about doctors and our aches and pains and discussing the wonderful snake oil that Gladys swore was easing her pain, aiding her sleep, getting her shower sparkling clean and making her houseplants look healthier. Mostly, we had a cuppa and a chat and a laugh and went home feeling brighter than before. You just feel less alone when you meet other people who have the same illness you do, and you don’t have to devote every minute of your time together to slagging off doctors or having a pissing contest over whose pain is the worst - you can talk about the same things that everyone else in the world likes to chat, gossip and giggle over and feel like you’re among people who understand. I guess it depends on the group in question. I’m quite certain there are I Have Fibro And I Hate The World groups out there, but only because Hate The World groups are pretty ubiquitous across all human experience.
As for how to cure your friend… I have no answers. He’s got to work through it himself because he’s the only one who knows how he feels. Maybe he’s on to something with the cheese - hey, it works for some people with migraines! - or maybe he’s wasting his life, but he’s going to have to deal or not deal with it his own way and there’s nothing you can do except be there for him when he realizes the depression part, at least, can be treated.
I have near constant visual migraines (though pain from them are rare), so I’m not a stranger to that subject.
Personally I think most migraine triggers are bullshit. Humans are terrible at connecting the dots. It took us thousands of years to figure out that doing it makes babies. I used to have this shirt, and for whatever reason it’d turn my skin blue. The first time it happened, I rushed to the hospital convinced I was dying. The next few times I freaked out, saw doctors, etc… It took me the better part of a year to figure out that every time I worse this shirt, I turned blue.
And this is a symptom that is very unusual and something that didn’t happen often (the shirt was formal wear, so I only wore it on special occasions.) I can’t imagine where I’d begin to tease out what of the dozens of foods I eat each day, which of the many stressful things or what of the many chemicals I encounter trigger pain, which I feel to some degree every day. I have no idea how people who say “Oh, every time I’m exposed to Sodium Laurel Sulfate I sneeze twice.” I mean, how do you ever figure that out?
Another thing about my friend- he has close family members who practice alternative medicine, so since childhood he’s been given this or that for every last on of his aches and pains. He tries to do the same for me- offering me X when I can’t sleep, Y when I have the sniffles and Z when I’m all wonky from stress. I can’t make him understand that sometimes people are just restless, sniffly and stressed and it’s completely normal- not something with a cause or a cure.
Well, keeping a migraine diary isn’t exactly an obscure idea. Google “migraine diary” and you’ll get a lot of results suggesting it’s a good diagnostic tool that can aid identifying triggers so you can eliminate them. I mentioned in the other thread that changing my diet had a beneficial effect for me. It wasn’t anything complicated, I just began to notice a pattern: when I ate certain foods, I was more likely to have a stomach upset soon after. I’d eliminate the suspect food for a while to see if that made a difference. Then I’d try reintroducing it again to see if anything changed. Through trial and error, I eventually identified several foods that seemed to make a difference and I began avoiding them. My goal at the time was to try to reduce the severity of IBS, but to my surprise the end result was that my fibro symptoms were drastically reduced too.
Yeah, I watched my parents try all sorts of alternative remedies when my father was diagnosed with AS because they didn’t want to accept the doctor’s prognosis. At the end of it, the AS wasn’t one iota better but Dad’s wallet sure was lighter. It gave me a deep and abiding scepticism of alternative medicines and therapies. I have more faith in conventional medicines because there’s (I trust) science and a lot of testing behind them, but I’m reluctant to take so much as paracetamol if I can avoid it.