Terra Ziporyn wrote a book about this - Nameless Diseases. It’s a terrific investigation into the desire to know the name of what ails us and how satisifying it is to be able to come up with something. (I take great pleasure in reporting this in that Terra was a student of mine many years ago, and I am due recognition and full credit for any and all of her subsequent successes)
For most clinicians I know, it’s not so much whether it’s “all in one’s head.” It’s that the “head” part of it–the psychological dimensions of the patients with fibromyalgia–makes the condition qualitatively different to manage even if the practical manifestations are roughly on a par with other illnesses.
I leave it to the reader here to review the several posts by fibromyalgia “sufferers” to see if the stereotypical observations apply to the SDMB posts here, but in general here are some of those fibromyaliga personality-type stereotypes:
-
An excruciating attention to detail about every nuance; every reaction; every element of suffering; every up and down…in general an exhaustive diary of the sufferer’s daily battles. Contrast this to a patient who is a quadriplegic, say. Ask the quad his history: “Oh doc; I got drunk 4 years ago and dove into a shallow river. Been a quad in this wheelchair ever since.”
-
A self-focus, along with a suspicion of standard clinical medicine and a litany of how and why they have been unhelpful, inaccurate and inattentive. Again, as opposed to the quad: “Ain’t nuthin’ anybody could do.”
-
Endless pursuit of vastly disparate remedies substantially disproportionate to the efficacy of any remedy. The percent of FM sufferers pursuing the next remedy versus, say, the precent of quadriplegics doing the same is markedly greater; such pursuits tremendously complicate treatment of the patient because every visit is an interminable discussion of the latest strategy despite the fact that there are few consistent strategies across patients.
-
The suffering. It’s just qualitatively different for the FM patient somehow, and the well world will never understand. They are the master sufferers–patient and determined–but sufferers nevertheless.
All stereotypes, of course…
A few months ago I passed some information about fibromyalgia to my roommate, a 63-year-old man who suffers with chronic pain that has gone on for years and no doctor has been able to diagnose or effectively treat. He said he would ask his doctor about it, but I haven’t heard anything more from him on the subject.
While I, not being any kind of medical professional, obviously can’t diagnose my roommate, after living with the guy for a little over four years I can honestly question just how much of his condition is mental. It was interesting to note that Lyrica is an anti-anxiety drug, having observed first-hand the things that seem to trigger or exacerbate my roommate’s condition: basically, anything new or unexpected in his environment causes a reaction of one sort or another. For example:
• Having been acquainted with this guy for several years, I mistakenly assumed when I moved in with him that he was aware that I was a smoker. That turned out not to be the case. However, it didn’t come up for a couple weeks because I was already in the habit of doing all of my smoking outdoors out of courtesy to non-smokers. Since I’m not an especially heavy smoker, I wasn’t making enough unexplained trips to the park across the street to cause him to ask, so it didn’t come up. He also never made a single mention of smelling cigarette smoke or exhibited any ill effects during that time … until the day I happened to mention that I was going across the street for a smoke.
Now, it’s especially worth noting that on that day the entire valley we live in was filled with smoke from a nearby forest fire that had been burning for a few days. Naturally, the inside of our house smelled like this smoke, mainly because you couldn’t open a door without it coming inside, and our only air conditioning at the time was a swamp cooler that sucked air in from outdoors. However, these fires are a normal summer event where we live, and my roommate was exhibiting no ill effects whatsoever — until I mentioned that I smoked. I went across the street, smoked my cigarette, and came back into the house. The instant I walked in the front door, my roommate, sitting near the rear of the house, immediately started coughing and gasping for breath and complaining of the effect that cigarette smoke has on him.
• We have an old scrap of carpet on the kitchen floor to stand on while preparing meals at the counter. It’s mainly there because of the cold linoleum in the fall/winter and our bare/sock feet. It’s an ugly, misshapen, stained thing that another former roommate put there. I decided to replace it with something new and more attractive - an entryway rug I found at Costco. This rug was made of two things: a polyester top surface heat-fused (not glued) to a natural rubber base. Immediately upon seeing the rug, my roommate developed a “splitting headache” and “difficulty breathing” caused by “the smell/fumes”. I put my nose right against the rug and inhaled deeply - the thing had no discernible smell whatsoever. In this case, I suspect he had read about the chemicals used in carpet manufacture, like formaldehyde, and panicked when he saw the rug, despite the fact that it contained no such substances (the tag said “Made from: rubber (base), polyester (top)”).
• I bought a can of air freshener for the upstairs bathroom (which is used almost exclusively by me), because I occasionally take an especially odiferous dump. The first time I sprayed the stuff he promptly complained about difficulty breathing and a headache because “that stuff has a really strong smell”. (No, no it didn’t - it had an extremely subtle smell compared to most spray-type air fresheners.) Conversely, he’s apparently totally unable to detect the completely overwhelming fragrance of the Pine-Sol I use to mop the kitchen and dining room floors (the two rooms where he spends most of his time) - something I can still smell throughout the entire house hours after I’ve finished mopping.
• He started experiencing “flare-ups” shortly after learning that I play Dungeons & Dragons, and read fantasy novels … and comic books. He blamed these on “demonic attacks” caused by my reading material. :rolleyes:
Also related to anxiety, the guy constantly worries about everything, from money to crime, and the more he worries the more his condition “flares up”.
In his book “The Problem of Pain”, C.S. Lewis stated that chronic pain sufferers tend to become “domestic tyrants”. After living with this guy, I see what Lewis meant. Everything revolves around him and his condition. You can hardly have a conversation on any topic without him working in some reference to it, and all of his reactions to things seem calculated to enforce complete control over his environment. It’s not surprising to me that his wife filed for divorce shortly after their youngest child moved out, and that his grown children almost never visit him.
Actually, I don’t think that’s an apples to apples comparison. Someone who is quadripelegic generally knows the root cause, and the doctors generally agree on that. So there is a clinical basis for setting expectations for what can and can’t be done. Also, someone who is quadripeligic isn’t being bounced from doctor to doctor, some of whom don’t believe they’ve lost the use of their limbs.
As Irishgirl said up the chain:
I would think it’s far more rare for a quadripeligic to run into that kind of attitude from doctors.
Dealing with fibromyalgia is difficult on both sides of the doctor/patient relationship. I’ve done online support for folks with fibro, and after a few years, I burned out on it. Partly because I just didn’t want to be so immersed in the topic since I live with it, and partly because there are a portion of folks who are wearing to deal with. But I wouldn’t say it was even the majority who were like that.
I think some of the dynamics that occur between doctors and patients simply have to do with the fact that nobody really knows what the root cause is, and there is no one treatment that works for the majority of patients. How can that not be frustrating on both sides? Both sides make mistakes in how they deal with each other, and it perpetuates a lot of misunderstanding in both directions.
Maybe someday we’ll know the root cause of what’s going on with folks with fibro, which will allow more targeted treatments (hopefully). When that happens, I think the dynamics in the doctor/fibro patient relationship will shift. I’m not really holding my breath that we’ll have any answers in my lifetime, so for now, I find it better to manage my fibro on my own, and minimize the involvement of my doctor. I just go to him for other things. Fortunately, guaifenesin is over the counter, so his involvement in the fibro stuff really isn’t required. I’m sure he’s happier that way too, and he’s generally a good doctor, so it works for us.
Chief Pedant, I’m floored that you use a quadriplegic as a comparison to fibromyalgia. I really hope that is not an indication of how you practice medicine. It’s probably much easier to diagnose a quad than it is someone with fibro. The quad’s problems are pretty straightforward. My experience has been that most people, and that includes drs., don’t have much of an idea of what goes on with fibro. I get the idea that you don’t like dealing with fibro ‘sufferers’, I suspect in turn that they don’t like dealing with you. Your attitude explains why so many with fibro find so many drs. unsympathetic and dismissive. Perhaps we take up your time with descriptions of how we feel in hopes that you might find some way to help before you move us as quickly out the door as possible.
Looks to me like you nailed it.
I was listing stereotypes, and labeled them as such.
I believe if you read my post more carefully, you might notice that the comparison with the quadriplegic has more to do with the attitude toward the illness and the suffering itself than whether or not a diagnostic dilemma is involved. This is what raises the question of whether the primary problem is organic or functional (to use traditional terms). A quadriplegic, for instance, suffers daily in a wide variety of ways, but they are not perceived as being as focused on that suffering; seldom as self-focused in general; seldom as obsessed with the minutiae of their illness as are fibromyalgia patients.
I do not have occasion to treat patients with fibromyalgia, and as I referenced in an earlier post my personal approach is to refer such individuals to appropriate clinicians.
No quibbles with that approach from me. 
The difference between a quadriplegic and someone with fibromyalgia is that you can see what is wrong with the quad and you don’t have to take whatever complaints they might have about their health on faith.
Speaking in general for those with FM, like myself, regarding these stereotypes you listed… You can’t really compare a person with FM to a quadriplegic. We like to think that there is a cure out there waiting to be discovered. You can’t cure missing limbs. And while some of these stereotypes may fit, there is reasoning behind the madness.
- Most people diagnosed with FM are also informed that not much is fully understood about it, and there seems to be no cure. It’s a hopeless diagnosis to learn you will be in pain for life. So it seems natural that when these folks meet up with others with FM and learn new things to try that could help, they would give these ideas a shot. I have tried a few various supplements over the years, but none seemed to work for me. Eventually you just learn to live with it. If the medical professionals can’t help us, WE do the research ourselves and learn what works for others and try it. A quadriplegic can’t pop a pill or concoct a tea that will sprout new limbs.
A diary of daily battles? Never heard this from any of the people I chat with. It’s the same every day. Pain & fatigue. Who needs to document that? We find what works best through trial and error and try to mask the pain best we can. I try not to focus on it myself. I strive to blend in.
-
Again, if they can’t help us or take us seriously, we are forced to educate ourselves. A quad can’t stick their limbs back on and be functioning perfectly again. There really AINT nuthin much they can do. But if WE can learn how to regulate the chemical imbalance that is at the root of FM, maybe we COULD be normal. So we try to understand it ourselves.
-
I can see how the ongoing experiments with alternative treatments would complicate things for the Doctor who is trying to care for patient with FM. Some people do take on the endless quest for the miracle cure. Some choose to go with what works best and stick with it. That has more to do with the individuals personality type, than a Fibromyalgia stereotype. For me, its Mobic and Osteo Bi Flex, two each daily - for life. No further experimentation needed.
-
No one wants to listen to a person drone on and on about their pain all day. The people in the pain don’t want to become the droners either. But from my point of view, if I never state that I am feeling lousy, people assume I must feel fine. If we DID keep others informed accurately, it would be unbearable to everyone. “I am in agony now… I am still in agony… Still hurting… still in pain…” So no, we keep silent for the most part and hope people remember that this is an ongoing thing. If I am having an exceptionally bad day, I will announce once that I feel like crap, to alert them that I am not up to accomplishing much physically. Nuff said. Do they really understand how I feel? Probably not.
So yeah, maybe we are annoying, obsessive, and overly detailed about our illness. We learn to make lots of lists, because on any given day, we find we have no memory. We have to keep our knowledge on hard copy. While the Doctors we come to with our problems may find us exhaustive, we are paying them to help us. And since they know very little about it, and WE are the ones who research it, we give them the details so THEY can learn to help us. The uncaring and unbelieving medical professionals made us this way.
These posts keep reinforcing exactly what Chief Pedant was saying. Blah blah blah blah
Show me where we’ve worked fibromyalgia into non-fibro related threads and I’ll concede you have a point. In a thread where someone was asking about fibro and a lot of “I don’t know a lot about it but I think they’re all fakers/crazy” was being thrown around, I don’t think it was uncalled for to try to give an “insider” perspective.
Meanwhile, in real life I don’t recall when I last had reason to mention it. Certainly not recently, and not in great detail. It just doesn’t come up all that often.
Please reread some of Chief Pedant’s other posts, here’s some quotes:
All other quotes in this post are Chief Pedant’s:
Here he’s trying not to be too biased, he may even be leaning a little toward “real disease”.
A little less unbiased but still not too bad.
I’d like to add that pain and frustration may tend to make most people with chronic issues a little nutty. It’s the effect, not the cause. Not to say that some people may not have first had psychological issues but in my experience and in my readings of other people’s experiences, their problems often started after an illness or injury, not a psychiatric problem.
Trying to lean toward less bias but had to throw in something to remind everyone about that darn nuttiness problem.
I highlighted the most pertinent points. He pretty much admits a bias or at least a lack of empathy and concedes he’s the wrong doctor for the disease. But then he comes back in later to post stereotypes about people with fibro and applies it to everyone here who has admitted to being diagnosed with it.
I have to wonder why he insists on posting such comments when he has already admitted a bias? This is GQ not GD, we are not debating the existence of this condition or the mental health of people diagnosed with it, but he continues to post along that vein. Others here have tried to direct the OP to other sources of information and give some personal experience since he expressed an interest in learning more. But since we’ve been dragged into a debate and our mental health questioned we counter because we have an opinion, too. But the way he worded his post and the way you worded yours, if we don’t respond we are admitting he was right, if we do respond we are proving him right. So damned if we do, damned if we don’t. Oh hell then, we’ll just keep commenting then. I guess we’re just nutty that way.
As for why people with fibro go into great detail about their problems, we do it when we see the doctor because that’s what they are supposed to be there for, you tell them what your problems are and they try to help you. At least that’s the idea.
As cazzle said, we really do not constantly whine about our problems everyday, what we do is cope, but if asked for information from someone who shows an interest in learning more what we go through we may indeed answer in detail. When we go to the doctor we give great detail because we are seeking help. Maybe the more we tell them, the more likely they will be able to help with some of our issues? Sure if you go to a Fibro message board you will see a lot of talk about our “suffering” because we are among people who can empathize and maybe pass along some coping mechanisms. And believe it or not sometimes we do have a sense of humor about it and poke fun at ourselves. Hey, we even tell jokes, too, just not to doctors because they don’t always have a sense of humor during office hours or they don’t find putting the milk in the cupboard and the cereal in the fridge as amusing as we do.
One more quote:
He admits he does not treat these individuals so maybe he’s not the best person to be discussing the condition.
You either agree it’s a medical condition or you think people with fibro are a bunch of crazy whiny martyrs, no skin off my nose which way you lean, I don’t have to live with you or see you in a medical capacity. Since I don’t feel this is the place for debate, I will not debate this further, I won’t be able to convince any of you otherwise, especially a doctor set in his ways. I did however hope to help the OP understand what his girlfriend may be dealing with. So since the OP did ask for actual information here’s some more links for him.
Mayo clinic
Fibromyalgia network
Web MD
National Fibromyalgia Association
Just from an anecdotal viewpoint; I’ve known four people who told me they suffered from fibro.
ALL FOUR were:
**
angry
white
upper middle-class
middleaged
overweight
females**
I recall one admitting to me that her doctor had prescribed regular moderate exercise. Since we were neighbors and I walked everyday anyway, I invited her to join me. She became angry and refused. After that we drifted apart, but I noticed that she never went anywhere except in her huge SUV and was steadily going from fat to obese…
That the mere fact that the medical community agrees to assign a specific name to a symptom complex - or even consider something a medical impairment - is largely a cultural rather than scientific phenomena. It was not too long ago that the APA considered homosexuality a diagnosable and treatable pathology…
I’m no doctor, but looking at that Mayo description - given the lack of objective proof and the multiplicity of differential and contributing diagnoses - I really wonder how useful the dx of FMS is. Well, folks in this thread - and elsewhere - seem to get some satisfaction out of having this particular name appended to their symptoms. So heck, if it gives you some satisfaction, more power to you. I am not sympathetic, however, to people who desire to get disability benefits for a medical condition with no clear objective indicia.
I think most people acknowledge that pain and other symptoms can be psychosomatic. So for those people who believe they have FMS - why exactly is it that you believe it is physical rather than mental in nature? And it is not enough that you would simply “wish it away.” A lot of clinically depressed people would prefer to get better, but it doesn’t work that way.
The Mayo site lists other things FMS was previously consdered. This supports my understanding that - in large part - FMS is simply today’s preferred designation for people who complain of various symptoms with no demonstrble underlying etiology. Today’s name does not make such complaints any more or less real.
What difference does it make to anyone else what we call our illness? I don’t think fibromyalgia is a very good descriptive term for it but it’ll do until we have a better understanding.
I’m surprised that anybody even concerns themselves with how we feel or what we call it. As far as disability, it’s not all that easy to get disability for fibro. It takes years in some cases. Whether those people actually have “Fibromyalgia” or not is not the point. They have a disability and are as deserving as any one with another disability.
I’m surprised that other people think they know better how someone feels than that person does. And Dripping, your comments show just how very little you know about fibro and I suspect you don’t really want to know but would prefer to stay ignorant and superior.
Wile E, you’ve been fair in your assessment of the situation. If we dare to try to straighten out misconceptions about fibro, then we’re angry, hysterical, etc. No way to win, so I agree with you, I’ll just do as I see fit and hope that more people finally learn more about the condition.
Show me where I claimed to “know about fibro”. All I posted was my personal observations of the four people I’ve encountered who said they had fibro.
The Vitamin D Cure talks about Fibromyalgia for 3 pages. I am not a doctor, I have never had Fibromyalgia and I cannot speak to the veracity of the claims in the book. However, the book might be worth a look.
Here I must disagree with you. Although the word “disability” is used casually in conversation, it has very specific meanings in various legal and medical settings.
When someone is requesting benefits or other accommodation under any law or “disability” program, it is paramount that they satisfy whatever that law or program requires in terms of proving that theirs is a qualifying condition. I can think of few entitlement/benefits programs under which it should be sufficient for an individual to say “I hurt.”
A very different standard applies to doctors, in their acceptance of the veracity of their patients’ complaints, than for disability examiners and others adjudging eligibility under specific programs.
IMO it may well be that if you are simply unfortunate enough that your problem is FMS - or a similar condition lacking objective indicia - you may simply be out of luck in terms of compensation/special treatment under various programs.