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[Fibromyalgia], Lycanthropy and other mythological diseases

templewulftemplewulf Registered User regular
edited October 2009 in Debate and/or Discourse
Before we begin, the obligatory wiki for background on fibromyalgia, or FMS:
Wikipedia wrote:
Fibromyalgia is characterized by chronic widespread pain and also allodynia, a heightened and painful response to pressure.[1] Fibromyalgia symptoms are not restricted to pain, leading to the use of the alternative term fibromyalgia syndrome for the condition. Other core symptoms include debilitating fatigue, sleep disturbance, and joint stiffness. Some patients[2] may also report difficulty with swallowing,[3] bowel and bladder abnormalities,[4] numbness and tingling ,[5] and cognitive dysfunction.[6]

My wife has been a chronic pain sufferer for most of her life, but only in the last few years has she found doctors willing to take her seriously. Getting the fibromyalgia diagnosis from her rheumatologist was something of a relief, in that we actually have a name to give to doctors now. Given the douchey attitudes people have about it, we don't talk about it lot. However, two things have happened recently which spurred me on to make this thread.

First, Dave Ryan, a local talk radio host, tweets a distasteful "joke" that people who claim to suffer from fibromyalgia should be shot. That offends me in both content and lack of punchline. To sign a petition telling Dave Ryan to STFU, go here.

Secondly, a few days after that incident, I discovered new research that links fibromyalgia to a retrovirus. It's also linked to CFS as well as cancer. This is still years away from becoming a diagnostic test for clinical use, but it opens up new avenues of immunological research for FMS.

So, what do you think D&D? How far does this go to legitimize the plight of FMS sufferers? Is it mostly psychological? What are your experiences with this and related conditions like Chronic Fatigue Syndrome? Is the issue of doctors not taking their patients seriously confined to just these conditions, or is it a widespread problem?

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  • wwtMaskwwtMask Registered User regular
    edited October 2009
    My wife might have this. She's been suffering from constant aches and sharp pains in her wrists and hands for years, and it's gotten to the point that sometimes she drops things when a sharp pain randomly hits. Sometimes she can't stand to have any pressure at all on her hands, to the point that she can't even work because it's too painful to type. She's had a dozen tests (some of them painful) and all she has to show for them is a negative diagnosis of carpal tunnel syndrome. It's frustrating as hell to watch her go through that and I know she's been alternately angry and slightly depressed that she's been in pain but hasn't gotten an satisfactory results from her doctors.

    When he dies, I hope they write "Worst Affirmative Action Hire, EVER" on his grave. His corpse should be trolled.
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  • wallakawallaka Registered User regular
    edited October 2009
    It's real. And fuck anybody that says it isn't. I saw my ex-wife suffer with it and it isn't made up or "hysteria" or anything like that.

  • wwtMaskwwtMask Registered User regular
    edited October 2009
    Man, I didn't mention the hell that was pregnancy for my wife. She couldn't take anything but tylenol for pain relief, whereas before she was popping 800mg Ibuprofen all the time. The loosening of her joints during pregnancy plus the lack of serious pain relievers meant that she woke up every morning with her hands hurting so badly that she needed a half hour before they were usable.

    When he dies, I hope they write "Worst Affirmative Action Hire, EVER" on his grave. His corpse should be trolled.
    Twitter - @liberaltruths | Google+ - http://gplus.to/wwtMask | Occupy Tallahassee
  • Hexmage-PAHexmage-PA Registered User regular
    edited October 2009
    I'm pretty sure my mom has it. Is this something that predominately affects women?

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  • TachTach Registered User regular
    edited October 2009
    I've no doubt fibromyalgia is real, but over the last few years, the diagnosis has been more and more prevalent- leading to a lot of mis-diagnosis for people who aren't suffering from the problem. Keep in mind this is all anecdotal from me.

    Working in the disability field, I've seen a LOT of leaves diagnosed with fibro. It seems to be the diagnosis that some doctors come to last if there's nothing else they can find (barring mental issues) or it's an instant diagnosis.

    I've seen independent medical reports (basically professional 2nd opininons) that have patients learning how to mimic fibro pains during tests, but be otherwise fine during observation. It's an easy thing to fake, but a hard thing to actually diagnose correctly.

    I think I could say that 1 out of 5 cases I dealt with actually had fibromyalgia.

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  • Hexmage-PAHexmage-PA Registered User regular
    edited October 2009
    So it's another case of a bunch of liars taking advantage of someone else's suffering?

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  • MalaysianShrewMalaysianShrew Registered User
    edited October 2009
    Hexmage-PA wrote: »
    So it's another case of a bunch of liars taking advantage of someone else's suffering?

    The problem is what we can do about FMS. As it is, with no known cause, doctors can only treat the symptoms with heavy duty painkillers. But guess what? People love painkillers. And with a disease that has no medical test, it's not that hard to fake depending on the doctor.

    Basically, I think it's real, but I have heard that it is the easiest way to score a steady supply of painkillers. I'm not sure what the balance between junkies and actual patients is, but I'm guessing its heading toward the first more and more each year.

    Never trust a big butt and a smile.
  • templewulftemplewulf Registered User regular
    edited October 2009
    Tach wrote: »
    I've no doubt fibromyalgia is real, but over the last few years, the diagnosis has been more and more prevalent- leading to a lot of mis-diagnosis for people who aren't suffering from the problem. Keep in mind this is all anecdotal from me.

    Working in the disability field, I've seen a LOT of leaves diagnosed with fibro. It seems to be the diagnosis that some doctors come to last if there's nothing else they can find (barring mental issues) or it's an instant diagnosis.

    I've seen independent medical reports (basically professional 2nd opininons) that have patients learning how to mimic fibro pains during tests, but be otherwise fine during observation. It's an easy thing to fake, but a hard thing to actually diagnose correctly.

    I think I could say that 1 out of 5 cases I dealt with actually had fibromyalgia.

    That seems like quite an outlier. In what I've read, malingering is a real problem, especially with difficult-to-diagnose cases like these, but the highest I've seen was 35%.

    Now that there's a potential to create an honest-to-god immunological test, we will hopefully get this sorted out.

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  • Irond WillIrond Will WARNING: NO HURTFUL COMMENTS, PLEASE!!!!! Cambridge. MASuper Moderator, Moderator mod
    edited October 2009
    It's a super broad-spectrum disease that overwhelmingly affects women, has no measurable symptoms and no consistent list of symptoms. Lupus was this way for a long time as well before they narrowed it to something more specific. Lyme disease is another one. It may not even exist as its own thing but could be a collection of varied disorders.

    Also, it's the kind of thing that ends up attracting consipracy nuts and hypochondriacs/ Munchausen sufferers. Google "chemtrails" to see a disappointingly common belief as to the spread of Lyme disease/ Morgellons/ fibromyalgia. I am not at all saying that everyone who has one of these diseases is a hypochondriac, but if one were trying to concoct a disorder scenario, wouldn't you choose one that is considered dehabilitating but has no measurable symptoms?

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  • templewulftemplewulf Registered User regular
    edited October 2009
    Hexmage-PA wrote: »
    So it's another case of a bunch of liars taking advantage of someone else's suffering?

    The problem is what we can do about FMS. As it is, with no known cause, doctors can only treat the symptoms with heavy duty painkillers. But guess what? People love painkillers. And with a disease that has no medical test, it's not that hard to fake depending on the doctor.

    Basically, I think it's real, but I have heard that it is the easiest way to score a steady supply of painkillers. I'm not sure what the balance between junkies and actual patients is, but I'm guessing its heading toward the first more and more each year.

    Ironically, a lot of FMS and CFS sufferers think medical marijuana is loads more effective than the kinds of painkillers you're likely to get at the doctor.

    It's not legal in Minnesota, so the only alternative for my wife would be oxycontin, and neither of us think that's a great idea.

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  • templewulftemplewulf Registered User regular
    edited October 2009
    Irond Will wrote: »
    It's a super broad-spectrum disease that overwhelmingly affects women, has no measurable symptoms and no consistent list of symptoms. Lupus was this way for a long time as well before they narrowed it to something more specific. Lyme disease is another one. It may not even exist as its own thing but could be a collection of varied disorders.

    Also, it's the kind of thing that ends up attracting consipracy nuts and hypochondriacs/ Munchausen sufferers. Google "chemtrails" to see a disappointingly common belief as to the spread of Lyme disease/ Morgellons/ fibromyalgia. I am not at all saying that everyone who has one of these diseases is a hypochondriac, but if one were trying to concoct a disorder scenario, wouldn't you choose one that is considered dehabilitating but has no measurable symptoms?

    I agree that FMS tends to attract those kinds of people, which gives others - like mine and wwtMask's wife - a bad name. It's especially frustrating when you can't get even medical professionals to take you seriously because of these people.

    That's why I thought this news was exciting enough to get its own thread.

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  • templewulftemplewulf Registered User regular
    edited October 2009
    wwtMask wrote: »
    My wife might have this. She's been suffering from constant aches and sharp pains in her wrists and hands for years, and it's gotten to the point that sometimes she drops things when a sharp pain randomly hits. Sometimes she can't stand to have any pressure at all on her hands, to the point that she can't even work because it's too painful to type. She's had a dozen tests (some of them painful) and all she has to show for them is a negative diagnosis of carpal tunnel syndrome. It's frustrating as hell to watch her go through that and I know she's been alternately angry and slightly depressed that she's been in pain but hasn't gotten an satisfactory results from her doctors.

    FMS does tend to coincide with arthritis, especially for women who seem to be too young to suffer from arthritis.

    It also tends to show in people with mild mental disorders like anxiety and depression, which only compounds the "hypochondriac" douchebag problem.

    Edit:
    T-T-Triple combo!

    Double Edit:
    My second paragraph was meant more as a helpful diagnostic tool for you and your wife. If she suffers from anxiety, depression, or Cognitive Dysfunction, she really ought to see a rheumatologist for possible diagnoses.

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  • FeralFeral Who needs a medical license when you've got style? Registered User regular
    edited October 2009
    templewulf wrote: »
    Secondly, a few days after that incident, I discovered new research that links fibromyalgia to a retrovirus. It's also linked to CFS as well as cancer. This is still years away from becoming a diagnostic test for clinical use, but it opens up new avenues of immunological research for FMS.

    I don't have an account on that site, so I haven't read the whole article, but other articles I've been seeing about the research in question are talking about chronic fatigue syndrome, not fibromyalgia. Did they really implicate fibromyalgia too?
    templewulf wrote: »
    It also tends to show in people with mild mental disorders like anxiety and depression, which only compounds the "hypochondriac" douchebag problem.

    Of course, that introduces a correlation-causation problem. Did the depression cause the expression of fibromyalgia symptoms, or did the chronic pain cause depression, or do they have a common etiology?

    every person who doesn't like an acquired taste always seems to think everyone who likes it is faking it. it should be an official fallacy.
    the "no true scotch, man" fallacy.
  • durandal4532durandal4532 Registered User regular
    edited October 2009
    The problem with pain is that there is basically nothing anyone can do to diagnose it, beyond asking the patient. It's not very accurate or descriptive because well, patients aren't doctors. I tend to think that chronic pain/fatigue with no apparent source is a problem that is best treated psychologically, not pharmacologically. Of course, no one wants to be treated by a psychiatrist until they're really desperate because no one wants to be crazy.

  • templewulftemplewulf Registered User regular
    edited October 2009
    Feral wrote: »
    templewulf wrote: »
    Secondly, a few days after that incident, I discovered new research that links fibromyalgia to a retrovirus. It's also linked to CFS as well as cancer. This is still years away from becoming a diagnostic test for clinical use, but it opens up new avenues of immunological research for FMS.

    I don't have an account on that site, so I haven't read the whole article, but other articles I've been seeing about the research in question are talking about chronic fatigue syndrome, not fibromyalgia. Did they really implicate fibromyalgia too?
    templewulf wrote: »
    It also tends to show in people with mild mental disorders like anxiety and depression, which only compounds the "hypochondriac" douchebag problem.

    Of course, that introduces a correlation-causation problem. Did the depression cause the expression of fibromyalgia symptoms, or did the chronic pain cause depression, or do they have a common etiology?

    Ah, Feral! I was hoping you'd be able to contribute!

    My understanding is that there were two rounds of tests. The first run identified XMRV in > 68% of patients with CFS. The second run used a refined test on a mix of CFS, FMS and control patients. The CFS / MFS group identified at > 95%, though I have no idea on the breakdown. Also shocking was that it identified the virus in ~10% of control patients. I suspect that they may just need to further develop their methodology, but it's pretty surprising if true.

    My suspicion is that depression and fibromyalgia share a common cause, but I'm probably just defensive after everything we've gone through.

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  • DmanDman Registered User regular
    edited October 2009
    templewulf wrote: »
    Irond Will wrote: »
    It's a super broad-spectrum disease that overwhelmingly affects women, has no measurable symptoms and no consistent list of symptoms. Lupus was this way for a long time as well before they narrowed it to something more specific. Lyme disease is another one. It may not even exist as its own thing but could be a collection of varied disorders.

    Also, it's the kind of thing that ends up attracting consipracy nuts and hypochondriacs/ Munchausen sufferers. Google "chemtrails" to see a disappointingly common belief as to the spread of Lyme disease/ Morgellons/ fibromyalgia. I am not at all saying that everyone who has one of these diseases is a hypochondriac, but if one were trying to concoct a disorder scenario, wouldn't you choose one that is considered dehabilitating but has no measurable symptoms?

    I agree that FMS tends to attract those kinds of people, which gives others - like mine and wwtMask's wife - a bad name. It's especially frustrating when you can't get even medical professionals to take you seriously because of these people.

    That's why I thought this news was exciting enough to get its own thread.

    Fakers are annoying in general but I imagine the number of people who fake something like this for years and don't have an obvious drug addiction is very low.

    I get annoyed by people who claim to get "migraine headaches" but aren't ever debilitated by the headache and never take prescription meds for it.

    My little brother used to get chronic ear infections and sinus headaches. If you get sinus headaches or whatever just say so, you'll get a lot more sympathy from me than if you claim to get migraine headaches, which will just piss me off.

    The whole outbreak of self diagnosis has really marginalized the credibility of people who are actually suffering.

  • WassermeloneWassermelone Registered User regular
    edited October 2009
    I have undiagnosed chronic pain. Sometimes its really bad, sometimes its just ok, but its always there. The worst part is I feel like a hypochondriac all the time since every medical test I've had (a lot) has come back negative.

    Some of the symptoms listed are familiar, but some of the major ones arn't (which means this probably doesn't fit). I don't feel extra pain on pressure, but I do have... surprisingly... all of this: "[2] may also report difficulty with swallowing,[3] bowel and bladder abnormalities,[4] numbness and tingling ,[5] and cognitive dysfunction.[6]". I also have anxiety attacks which likely explains the swallowing problem.

    I don't even know how I'd feel if I got a fibromyalgia diagnosis. Its probably real, but I part of me would think that I was hanging onto some fake diagnosis just to allay the stress of NOT having a diagnosis.

  • templewulftemplewulf Registered User regular
    edited October 2009
    I have undiagnosed chronic pain. Sometimes its really bad, sometimes its just ok, but its always there. The worst part is I feel like a hypochondriac all the time since every medical test I've had (a lot) has come back negative.

    Some of the symptoms listed are familiar, but some of the major ones arn't (which means this probably doesn't fit). I don't feel extra pain on pressure, but I do have... surprisingly... all of this: "[2] may also report difficulty with swallowing,[3] bowel and bladder abnormalities,[4] numbness and tingling ,[5] and cognitive dysfunction.[6]". I also have anxiety attacks which likely explains the swallowing problem.

    I don't even know how I'd feel if I got a fibromyalgia diagnosis. Its probably real, but I part of me would think that I was hanging onto some fake diagnosis just to allay the stress of NOT having a diagnosis.

    You would be shocked at what a relief it is to get that kind of validation. Having a real doctor put a real name on your problems is encouraging, even for me when I'm not the one with the condition.

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  • FeralFeral Who needs a medical license when you've got style? Registered User regular
    edited October 2009
    templewulf wrote: »
    You would be shocked at what a relief it is to get that kind of validation. Having a real doctor put a real name on your problems is encouraging, even for me when I'm not the one with the condition.

    I have at least one MUS, possibly two.

    The MUS I know I have is delayed sleep phase syndrome. It's very hard for me to get up early and very hard for me to go to bed early. My sleep schedule creeps later and later every day unless I force it to reset.

    I've missed appointments, been late to work, etc.

    A strong piece of evidence in favor of it being a medical condition is that my mom had the same problem. She deals with it by working nights, but before getting on the night shift she had experienced a lot of friction with prior employers when she'd inevitably show up to work late. Her mom was also a notoriously late sleeper.

    Even though I pretty much knew that I was wired to be a "night person," getting the actual diagnosis felt really, really good.

    As for the second possible MUS, I don't know if I have chronic fatigue syndrome, or if my intermittent fatigue issues are just symptomatic of my circadian rhythm disorder and my depression.

    And this might sound a little crazy, but the more time I spend in fluorescent light, the shittier I feel. I had the worst fatigue issues when switching from a car commute to office building illuminated by big bay windows to commuting by underground subway to an office building with no natural light and all fluorescent lamps. Could it have been depression from a life-change event? Yeah, sure, possibly, but on the other hand DSPS is a disorder that seems to affect how the body clcck is controlled by light. So maybe I have an abnormal response to light? I don't know. Sometimes you just know that there's something wrong with your body even if you don't know exactly what it is.

    every person who doesn't like an acquired taste always seems to think everyone who likes it is faking it. it should be an official fallacy.
    the "no true scotch, man" fallacy.
  • TL DRTL DR Registered User regular
    edited October 2009
    My mom has been diagnosed with fibro. She's also a complete hypochondriac and has a host of somatoform disorders.

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  • WassermeloneWassermelone Registered User regular
    edited October 2009
    templewulf wrote: »
    You would be shocked at what a relief it is to get that kind of validation. Having a real doctor put a real name on your problems is encouraging, even for me when I'm not the one with the condition.

    Yeah I understand. Not knowing what this is ridiculously stressful. I misheard a nurse when calling for the results of an MRI and I thought she said that a really small bone spur on my spine was causing the pain. I was all grins and smiles until the doctor called me and told me that he did not think it was responsible. I got that crash all over again.

    It does help allay my worries of just somehow making it up in my head that all my doctors have believed me. I don't want pain meds, I want a diagnosis.

  • FeralFeral Who needs a medical license when you've got style? Registered User regular
    edited October 2009
    templewulf wrote: »
    Feral wrote: »
    templewulf wrote: »
    Secondly, a few days after that incident, I discovered new research that links fibromyalgia to a retrovirus. It's also linked to CFS as well as cancer. This is still years away from becoming a diagnostic test for clinical use, but it opens up new avenues of immunological research for FMS.

    I don't have an account on that site, so I haven't read the whole article, but other articles I've been seeing about the research in question are talking about chronic fatigue syndrome, not fibromyalgia. Did they really implicate fibromyalgia too?
    templewulf wrote: »
    It also tends to show in people with mild mental disorders like anxiety and depression, which only compounds the "hypochondriac" douchebag problem.

    Of course, that introduces a correlation-causation problem. Did the depression cause the expression of fibromyalgia symptoms, or did the chronic pain cause depression, or do they have a common etiology?

    Ah, Feral! I was hoping you'd be able to contribute!

    My understanding is that there were two rounds of tests. The first run identified XMRV in > 68% of patients with CFS. The second run used a refined test on a mix of CFS, FMS and control patients. The CFS / MFS group identified at > 95%, though I have no idea on the breakdown. Also shocking was that it identified the virus in ~10% of control patients. I suspect that they may just need to further develop their methodology, but it's pretty surprising if true.

    My suspicion is that depression and fibromyalgia share a common cause, but I'm probably just defensive after everything we've gone through.

    Interesting. I'm going to have to pick up this issue of Science and check it out.

    every person who doesn't like an acquired taste always seems to think everyone who likes it is faking it. it should be an official fallacy.
    the "no true scotch, man" fallacy.
  • jclastjclast Registered User regular
    edited October 2009
    wallaka wrote: »
    It's real. And fuck anybody that says it isn't. I saw my ex-wife suffer with it and it isn't made up or "hysteria" or anything like that.

    I don't doubt that those who are diagnosed with it have real pain. I do, however, doubt that all of those laundry list of symptoms are really for one thing. It's good to have a name for it because it makes people feel better, but after reading the wiki article (assuming it is accurate) they could have just called it "you hurt and we don't know why syndronme."

    steam_sig.png
  • FeralFeral Who needs a medical license when you've got style? Registered User regular
    edited October 2009
    jclast wrote: »
    I do, however, doubt that all of those laundry list of symptoms are really for one thing.

    It could very well have a single etiology, especially if there's an autoimmune or neurodegenerative component.

    Look at a common autoimmune condition: rheumatoid arthritis. The list of symptoms is a mile long and includes such vague unspecified symptoms as fatigue and malaise.

    Or multiple sclerosis: another list of symptoms a mile long including depression and fatigue.

    Or, as previously mentioned, lupus.

    Just because the symptoms look unrelated doesn't mean they are unrelated.

    every person who doesn't like an acquired taste always seems to think everyone who likes it is faking it. it should be an official fallacy.
    the "no true scotch, man" fallacy.
  • BobCescaBobCesca Registered User regular
    edited October 2009
    My brain is dead but, and there will be a longer post later, I have CFS and now Fibromyalgia.

    Sufficient to say that both suck and have made my life extremely difficult.

    When my brain starts working again I'll try and make some personal replies to people who have posted about my experiences with these things.

  • wallakawallaka Registered User regular
    edited October 2009
    Well, gotta call it something. And lupus was taken. Similar symptoms across a group of people with no apparent cause? That's still a disease. My ex had pretty good results going to a pain specialist, but when we moved from the area could not find another. She hates taking drugs, but has to.

    The fact that hypochondriacs claim it is irrelevant. People commit welfare fraud too, but that does not negate the fact that there is a need for welfare.

  • FeralFeral Who needs a medical license when you've got style? Registered User regular
    edited October 2009
    wallaka wrote: »
    Well, gotta call it something. And lupus was taken. Similar symptoms across a group of people with no apparent cause? That's still a disease. My ex had pretty good results going to a pain specialist, but when we moved from the area could not find another. She hates taking drugs, but has to.

    The fact that hypochondriacs claim it is irrelevant. People commit welfare fraud too, but that does not negate the fact that there is a need for welfare.

    <3

    Ultimately, any destruction caused by malingerers is far, far outweighed by the benefits of treating genuine sufferers.

    Also: pain management specialists are generally much better at identifying malingerers and dealing with them than general practitioners. The entire purpose of a PMS is to walk the fine line between treating a patient with addictive opioid medication and using other non-addictive drugs or non-drug therapies.

    Unfortunately, there aren't enough PMSes in the country, not by a longshot.

    every person who doesn't like an acquired taste always seems to think everyone who likes it is faking it. it should be an official fallacy.
    the "no true scotch, man" fallacy.
  • BobCescaBobCesca Registered User regular
    edited October 2009
    From the illness thread from a couple of weeks ago:
    BobCesca wrote: »
    because it's just too depressing to go into extended detail, here are the trials and tribulations of Bobcesca from about the age of 10.

    Age 10:
    Knee mysteriously swells up, is extremely painful, and difficult to walk on for about a week and then the swelling would reduce and all would be fine. Repeat monthly for about six years.

    Age 11:
    Left shoulder starts to dislocate at the slightest provocation (picking up a pen, reaching for a door, etc.). Sees specialist surgeon after a year or so of people not having a clue and am told that there is a 67% chance the operation to fix it would go wrong, and that I'm too young anyway. Physio to tighten muscles leading to tightness in my shoulder muscles for the rest of my life so far (15 odd years so far).

    Age 12:
    Start getting really tired, headaches, food allergies, blackouts, etc. Finally given a diagnosis of M.E. (though not from my GP, who tried to trick my parents into signing something to allow me to be sectioned). Miss three years of school, nearly end up in a wheelchair, get close to agrophobia ('cos I would quite often not leave the house for weeks at a time), associated depression from age 15, low to fuck all immune system to the present day, put on crapload of weight I've never been able to lose, still have a load of food allergies from this, etc.

    Age 17/18:
    Knee pain, which has been intermittent for the past couple of years gets really, really bad. Nearly end up in a wheelchair (and have to use them for shopping, holidays, etc), passed around from consultant to consultant with no one able to give me a proper answer to what is wrong with me. Takes several years for any kind of pain-killer regime to be properly set up.

    Age 21ish
    Pain moves into all my joints. And gets even worse. Finally get decent pain-killers but have to keep modifying doseage (and the months where it wasn't right were torture)

    Age 25ish
    One doctor says I have fibromyalgia. However, it's still not a proper diagnosis, so none of that lovely "you are properly disabled" government money for me.
    Told that whatever is wrong with me is definitely degenerative and will be with me for the rest of my life. This there will be very strong drugs for the rest of my life so it would be dangerous for me to ever think about getting pregnant.

    Age 26
    Start getting further problems with my hands and fingers, specifically tingling, numbness and pain. Go to GP who sends me to a neurologist who, after tests says I have Carpal Tunnel in both hands. Try to use splints but it gets worse.

    Age 27:
    Finally try to get hands sorted after suffering for a year or so.
    Operation on left hand doesn't work, so they do something around the elbow, which also doesn't work.
    Operation on right hand seems to maybe have worked (but it's too early to tell for sure).

    On top of all the regular pain I have on a day to day basis in all my joints, I will have pretty bad flare ups in my shoulders and back due to hyperflexability, for which the physio exercises cause so much pain they leave me bed-ridden, so I just have to take extra painkillers until it calms down a bit.

    And that's been the past 17 years.

  • durandal4532durandal4532 Registered User regular
    edited October 2009
    Feral wrote: »
    wallaka wrote: »
    Well, gotta call it something. And lupus was taken. Similar symptoms across a group of people with no apparent cause? That's still a disease. My ex had pretty good results going to a pain specialist, but when we moved from the area could not find another. She hates taking drugs, but has to.

    The fact that hypochondriacs claim it is irrelevant. People commit welfare fraud too, but that does not negate the fact that there is a need for welfare.

    <3

    Ultimately, any destruction caused by malingerers is far, far outweighed by the benefits of treating genuine sufferers.

    Also: pain management specialists are generally much better at identifying malingerers and dealing with them than general practitioners. The entire purpose of a PMS is to walk the fine line between treating a patient with addictive opioid medication and using other non-addictive drugs or non-drug therapies.

    Unfortunately, there aren't enough PMSes in the country, not by a longshot.

    The tough part about dealing with malingering when you're a GP is that every one of your incentives says "give them whatever they want and kick them out the door ASAP". When you're a specialist, you get a proscribed patient population, which means you can take a bit of time out to think about whether this person is accurately representing themselves. When you're a GP, that extra time taken comes straight out of your wallet.

    It leads, I think, to the majority of over-diagnosing. It's not that GPs can't tell when someone is faking it or doesn't really need a drug or is only barely in category X, at least not always. It's just that there's no reason for them to take the time to separate the wheat from the chaff.


    Also, the easiest solution to pain diagnosis is to invent a machine that lets you switch bodies with people. But of course, then we'd inevitably run the risk of having to shoot one during a fight without knowing if they've switched back and that's at best 50/50 unless you know the right question to shout at them while weeping.

  • Irond WillIrond Will WARNING: NO HURTFUL COMMENTS, PLEASE!!!!! Cambridge. MASuper Moderator, Moderator mod
    edited October 2009
    Feral wrote: »
    jclast wrote: »
    I do, however, doubt that all of those laundry list of symptoms are really for one thing.

    It could very well have a single etiology, especially if there's an autoimmune or neurodegenerative component.

    Look at a common autoimmune condition: rheumatoid arthritis. The list of symptoms is a mile long and includes such vague unspecified symptoms as fatigue and malaise.

    Or multiple sclerosis: another list of symptoms a mile long including depression and fatigue.

    Or, as previously mentioned, lupus.

    Just because the symptoms look unrelated doesn't mean they are unrelated.

    Well yeah but to be fair a lot of the things called "lupus" or "lupus-spectrum" before they firmed up the definition and etiology turned out not to be lupus at all. Same with MS.

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  • Irond WillIrond Will WARNING: NO HURTFUL COMMENTS, PLEASE!!!!! Cambridge. MASuper Moderator, Moderator mod
    edited October 2009
    Feral wrote: »
    wallaka wrote: »
    Well, gotta call it something. And lupus was taken. Similar symptoms across a group of people with no apparent cause? That's still a disease. My ex had pretty good results going to a pain specialist, but when we moved from the area could not find another. She hates taking drugs, but has to.

    The fact that hypochondriacs claim it is irrelevant. People commit welfare fraud too, but that does not negate the fact that there is a need for welfare.

    <3

    Ultimately, any destruction caused by malingerers is far, far outweighed by the benefits of treating genuine sufferers.

    Also: pain management specialists are generally much better at identifying malingerers and dealing with them than general practitioners. The entire purpose of a PMS is to walk the fine line between treating a patient with addictive opioid medication and using other non-addictive drugs or non-drug therapies.

    Unfortunately, there aren't enough PMSes in the country, not by a longshot.

    The tough part about dealing with malingering when you're a GP is that every one of your incentives says "give them whatever they want and kick them out the door ASAP". When you're a specialist, you get a proscribed patient population, which means you can take a bit of time out to think about whether this person is accurately representing themselves. When you're a GP, that extra time taken comes straight out of your wallet.

    It leads, I think, to the majority of over-diagnosing. It's not that GPs can't tell when someone is faking it or doesn't really need a drug or is only barely in category X, at least not always. It's just that there's no reason for them to take the time to separate the wheat from the chaff.


    Also, the easiest solution to pain diagnosis is to invent a machine that lets you switch bodies with people. But of course, then we'd inevitably run the risk of having to shoot one during a fight without knowing if they've switched back and that's at best 50/50 unless you know the right question to shout at them while weeping.

    By the same token, one could say that a specialist has every incentive to confirm diagnosis of long-term broad-spectrum illnesses. Even without the obvious financial incentives, there's the problem of "the man with the hammer". To a podiatrist, pretty much every ailment comes from poorly-fitting shoes and don't get me started on fuckin chiropractors.

    Wqdwp8l.png
  • FeralFeral Who needs a medical license when you've got style? Registered User regular
    edited October 2009
    The tough part about dealing with malingering when you're a GP is that every one of your incentives says "give them whatever they want and kick them out the door ASAP". When you're a specialist, you get a proscribed patient population, which means you can take a bit of time out to think about whether this person is accurately representing themselves. When you're a GP, that extra time taken comes straight out of your wallet.
    Feral wrote: »
    Anyway, I think that there is a very simple psychological dynamic that happens when you're paying for your own health care. If you hire a professional, you expect that professional to render services that he is uniquely qualified to provide. If they don't, you feel cheated. If a physician tells you, "Eat right and exercise," well shit I could have gotten that advice from my mother for free. But if a physician hands you a scrip, well then you've at least gotten your money's worth from that visit.

    That was from an old thread, but I think it applies here.
    Irond Will wrote: »
    Well yeah but to be fair a lot of the things called "lupus" or "lupus-spectrum" before they firmed up the definition and etiology turned out not to be lupus at all. Same with MS.

    Yup. That's true.

    every person who doesn't like an acquired taste always seems to think everyone who likes it is faking it. it should be an official fallacy.
    the "no true scotch, man" fallacy.
  • firewaterwordfirewaterword Tighter than R. Kelly in his teens. Registered User regular
    edited October 2009
    My grandma suffers from this, though it's become a lot more manageable for her through physical therapy from what I understand. My mom is a PT and makes sure my grandma gets the help she needs, even though she's on the other side of the world (NZ).

    Anyway, is it right that it's still considered a "syndrome" and not a "disease?" I heard something on NPR the other day about that retrovirus that might be related to CFS. That's pretty interesting, and good news for sufferers I'm sure.

    Regarding fakers, I don't really know how I feel. I absolutely believe these are real problems/conditions that affect people in a really bad way. That said, my cousin claimed to have CFS for years, but I swear to god it was bullshit. She's morbidly obese, lazy, and just plain objectionable. God help me for saying this, but I just know she used CFS to get her parents to let her do pretty much anything she damn well pleased.

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  • templewulftemplewulf Registered User regular
    edited October 2009
    Irond Will wrote: »
    don't get me started on fuckin chiropractors.

    You know, it wasn't until a few years ago that I knew how crazy they were. I always thought of them as being physical therapy guys. When I found out there's this whole culture of "straighten your spine to cure your sinus infection", I got really weirded out.

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  • geckahngeckahn Registered User
    edited October 2009
    Feral wrote: »
    jclast wrote: »
    I do, however, doubt that all of those laundry list of symptoms are really for one thing.

    It could very well have a single etiology, especially if there's an autoimmune or neurodegenerative component.

    Look at a common autoimmune condition: rheumatoid arthritis. The list of symptoms is a mile long and includes such vague unspecified symptoms as fatigue and malaise.

    Or multiple sclerosis: another list of symptoms a mile long including depression and fatigue.

    Or, as previously mentioned, lupus.

    Just because the symptoms look unrelated doesn't mean they are unrelated.

    Most people with Rheumatoid probably are gluten intolerant.

    Ditto with people with chronic Migraines.

    I don't know a lot about Fibromylagia, but I do understand that people can have Candidiasis and have it mis-diagnosed as Fibro.

  • Irond WillIrond Will WARNING: NO HURTFUL COMMENTS, PLEASE!!!!! Cambridge. MASuper Moderator, Moderator mod
    edited October 2009
    Regarding fakers, I don't really know how I feel. I absolutely believe these are real problems/conditions that affect people in a really bad way. That said, my cousin claimed to have CFS for years, but I swear to god it was bullshit. She's morbidly obese, lazy, and just plain objectionable. God help me for saying this, but I just know she used CFS to get her parents to let her do pretty much anything she damn well pleased.

    I find "faking" irrationally infuriating. I'm not really sure why. I guess that's what makes it irrational. Maybe it's that it preys on the laudable human impulses of compassion and sympathy and ends up making suckers of the compassionate?

    Wqdwp8l.png
  • Irond WillIrond Will WARNING: NO HURTFUL COMMENTS, PLEASE!!!!! Cambridge. MASuper Moderator, Moderator mod
    edited October 2009
    templewulf wrote: »
    Irond Will wrote: »
    don't get me started on fuckin chiropractors.

    You know, it wasn't until a few years ago that I knew how crazy they were. I always thought of them as being physical therapy guys. When I found out there's this whole culture of "straighten your spine to cure your sinus infection", I got really weirded out.

    Chiropractors and homeopaths should be run out of the country on a rail. They end up getting a huge amount of support from people with "mystery diseases" because they are whores and willing to hand out any diagnosis a patient is willing to pay for.

    There are problems with the medical industry sure, but making it "less sciencey" is not going to fix any of its problems.

    Wqdwp8l.png
  • BobCescaBobCesca Registered User regular
    edited October 2009
    Irond Will wrote: »
    Regarding fakers, I don't really know how I feel. I absolutely believe these are real problems/conditions that affect people in a really bad way. That said, my cousin claimed to have CFS for years, but I swear to god it was bullshit. She's morbidly obese, lazy, and just plain objectionable. God help me for saying this, but I just know she used CFS to get her parents to let her do pretty much anything she damn well pleased.

    I find "faking" irrationally infuriating. I'm not really sure why. I guess that's what makes it irrational. Maybe it's that it preys on the laudable human impulses of compassion and sympathy and ends up making suckers of the compassionate?

    I just don't understand why anyone would want to fake fibromyalgia.

    I mean, surely there are easier things to fake.

    Actually, that's a lie. I know why people would want to fake it, it just upsets me so much my brain wants to not believe that such a thing could happen.

  • templewulftemplewulf Registered User regular
    edited October 2009
    BobCesca wrote: »
    From the illness thread from a couple of weeks ago:

    Wow, that sounds pretty rough. Thanks for sharing that. Even my wife doesn't have it that bad. The worst is when she gets bone spurs that prevent her from even walking around until they're surgically removed.

    That also reminds me that she has a lot of other illnesses (frequent kidney infections, sinus infections, etc.) that would make more sense if FMS was an immunological disorder. Maybe just coincidental, but this new research seems to fall neatly into place with my personal experience.

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  • firewaterwordfirewaterword Tighter than R. Kelly in his teens. Registered User regular
    edited October 2009
    Irond Will wrote: »
    Regarding fakers, I don't really know how I feel. I absolutely believe these are real problems/conditions that affect people in a really bad way. That said, my cousin claimed to have CFS for years, but I swear to god it was bullshit. She's morbidly obese, lazy, and just plain objectionable. God help me for saying this, but I just know she used CFS to get her parents to let her do pretty much anything she damn well pleased.

    I find "faking" irrationally infuriating. I'm not really sure why. I guess that's what makes it irrational. Maybe it's that it preys on the laudable human impulses of compassion and sympathy and ends up making suckers of the compassionate?

    I'd agree for sure. What upsets me is that the portion of people bullshitting, no matter how small of a group it may be, ends up casting a shadow on those who are legitimately suffering as well I guess. I accept that, heretofore, there's no real way of confirming or dis-affirming. Hopefully this retrovirus business will pave the way for some sort of substantive test or measurement, et cetera.

    Mind, the depth of my understanding of medicine and biology stems entirely from a single biology course (for non-science majors!) I took as a freshman in college and a female physiology course I accidentally signed up for a year or two later. I stuck with it because it turned out to be a really good way to meet women ("How gross was that infected cervix from Monday?!" "I know right! Eww... So, want to get a coffee after class?").

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