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Thread: Pleasing partners prolong pain

  1. #1

    Pleasing partners prolong pain

    I don't know about this. What do people think?

    Pleasing partners prolong pain
    22/9/2003
    It may seem surprising, but attentive, helpful spouses might actually prolong recovery from chronic pain.

    That's the conclusion of a study appearing in the September issue of The Clinical Journal of Pain.

    Researchers from the Pain and Rehabilitation Institute in Florida and from the University of Florida College of Dentistry found that overly supportive spouses could prolong the recovery of their injured partners. The researchers also discovered there were differences between the way each sex responds to a solicitous spouse.

    Spousal solicitousness is related to how male patients say they're doing and how female patients actually are doing, says study author Roger Fillingim, an associate professor of public health services at the University of Florida College of Dentistry.

    How the study was conducted
    For the study, Fillingim and his colleagues surveyed 114 female and 213 male chronic pain patients from the Pain and Rehabilitation Institute. Most were being treated for low back pain. Other sites of chronic pain included the legs, shoulders, arms and pelvis.

    The volunteers completed several questionnaires and physical assessments to measure their function and perception of pain. The volunteers were also asked about their spouses' behaviour.

    In men, the researchers found that those with highly attentive spouses reported higher levels of pain and more disability. But despite their complaints, the men did well on their physical function tests.

    Women with highly solicitous spouses didn't report feeling more pain or being more disabled by their injuries. Yet, these women performed more poorly on tests of physical function, such as lifting and walking, than women who had less attentive spouses.

    Experts speculate about the causes
    Fillingim says he's not sure why people with more attentive spouses do worse, but theorises the spouses may be increasing the pain by inadvertently rewarding the spouses for their pain with extra attention and favours.

    Patients are actually being rewarded for pain, and when you reward a behaviour, it becomes more frequent, he says.

    It is, however, equally plausible that the people who are doing more poorly are the ones whose spouses are more attentive, Fillingim says.

    Spouse also needs to be treated
    Dr Michel Dubois, director of the pain management centre at New York University Medical Center, says "an overly concerned spouse can be a handicap. The major message from this study is that you need to treat the patient, but also the spouse and make sure they don't do the wrong thing."

    Of course, that doesn't mean that you should abandon your injured spouse altogether. But, DuBois says, the ultimate goal should be self-sufficiency. For instance, he recommends that spouses should encourage their partners to do what they can for themselves and to not let them stay in bed all day.

    Fillingim agrees, saying spouses should encourage their partners to become more independent. - (HealthDayNews)
    Source

  2. #2
    Somehow we have to get pain docs to quit treating pain as monolithic, or grouping all pain people and all pain experiences together. In fact they should be most particular to make the distinction. Not making any distinction between nociception and neuropathy reveals them as not particularly well educated. Let them keep their judgmental speeches confined to back pain and develop a little reverence for the suffering creatures who struggle against the ravages of dreadful levels of CP.

    Pain from an actual injury is different from when it is the pain nerve itself which is sick. The brain processes these differently and the emotions are different. Comparing the psychiatric impact of a bad back with that of severe CP is like comparing bad room service to Auschwitz.

    Severe CP is underrated even by the docs who treat it because most cases are mild, like a sunburn. This is different from the burn level that is like standing on hot asphalt in the summer. The milder case misleads the doctor into thinking he is able to help the severe cases, which he cannot. The severe cases are "the worst pain known to man" (Ron Tasker) and a "pain beyond pain" (Riddoch).

    CP people are defenseless against this kind of propaganda, because the fMRI people haven't found a way to quantify hyperactivity, ie pain, in the thalamus.

    I do believe there are people that if you set them in a chair, pour hot water in the bucket and put their feet in it, and wrap them in a shawl, and bring food to them, they will soon die; whereas if you throw them out into the snow they might start moving around and live for many years.

    However, I have never seen anything but agony for severe CP patients. Secondary gain doesn't happen to them. I wish it did. Any gain of any kind would be nice.

    Since you can't measure pain, and you can't measure recovery, and "pain" doesn't exist as an average commodity, this study isn't a real study. Maybe sicker people needed more help and extra attention was in some cases due to the innate sense by the spouse that more care was needed.

    None of the parameters are definable. Junk science. I am suspicious they already had their conclusions before they did the research.

    Research that begins with answers isn't worth much. Besides, how many times do we need to be told that some people with low back pain are laying it on a little thick. There are just as many, or more, bravely trying to keep going in their jobs although they hurt. The new technique at Boston where they use a hot wire to form scar around the lumbar disc which prevents herniation may eliminate this problem. CP will still be here. What will the cynics have to publish then?

    One time Ted Kennedy's committee was trying to get testimony that too many antibiotics were being prescribed in the U.S. A committee staffer called my friend, who is an M.D., and asked how many antibiotics a year the AVERAGE patient got. The answer was perfect, "I wouldn't know an average patient if I saw one". This study assumes the differences in pain between the studied people was more or less uniform. Big error.

    In my case, I can't begin to list all the rewards I've gotten for my pain. That is, there is nothing to begin the list with. But man, I would weep if I even began to list what I have lost, what my children have lost, and how life has changed. I used to be human. Now I burn. I AM the burn. It is evil. I am in its grip.

    Even pain docs don't realize how severe CP is, because the severe ones quit coming and are lost to followup (and possibly lost totally) because the help is not there, and for those who are left, the less severe patients, it is embarassing to tell the doctor that endless little permutations and combinations of the latest tricyclics/anticonvulsants, or whatever works in peripheral neuropathy, aren't really helping the CP that much. He is the only person willing to listen, and since we are totally isolated from humanity, we do not want to offend him. I have had opioids and also lidocaine infused IV until my heart nearly stopped and it didn't even touch my CP.

    And few spouses will be supportive after a couple years. Often, only a good mother will hang in there. Several of the 22 CP guys who went through my rehab center killed themselves. Most of the rest are divorced.

    I know people who had thalamotomies and were dumbed down by it--where was their secondary gain? What secondary gain is there in lining up to have parts of your brain removed. These were normal, talented, productive people with no emotional problems before the CP changed them. Then they were pain zombies. Line me up and cut out parts of my brain. I was one of that line, but the neurosurgeon was good enough to inform me it wouldn't help. I didn't surrender my hope of normal life and fly to that big city alone for secondary gain. I went because I was desperate and could not imagine living with the pain. I still cannot, although I do it, day by day. But I must watch important parts of my life float away, until I have nothing left almost, so how could I ever talk about gain. And why would some pain doctor talk to me in those terms. No one should be allowed to speak such a word until they have had a little capsaicin injected under the skin, which will give them a tiny taste of CP.

    Let these doctors make a list of what CP people LOSE. Now there is something that might deserve publication, but since it doesn't simply repeat the old pain myths, it is not going to get published. It is too depressing. Too truthful for consumption. Too condemnatory of the lack of research. Let us play to the conventions of public myth--that will get published.

    You can bet if these pontificating experts had CP, they would stop their rehashing "research" on low back pain, which is NOT a model for Central Pain, and beg Zerhouni to get busy on neurotransmitters.

    I kept getting this secondary gain nonsense, so on my last spine surgery, I took NO pain meds afterward, just so the doc would know I am not after drugs. He never got the message. I am an expert at pain endurance. Fire up the Bunsen burners and put me on one and one of these researchers on another and we will see who pulls away first, even though I have hyperpathia.

    Incidentally, that last spine surgery also just happened to be one where I was paralyzed with curare/sux but didn't get enough halothane to be asleep for much of the surgery. There's a nice pain test for you. I never complained, but it gave me nightmares for two years. But I sure complain about CP because it NEVER STOPS and hasn't for 15 years.

    What would a study on noxious pain have to do with CP. Nothing. It would be like saying, We will now inject 100 people with Capsaicin and we will see how they react with and without supportive mates. How they would react is that they would ALL say, "Wow that really hurts" until the capsaicin wore off, spouse or no spouse. CP is capsaicin for life, over most of the body.

    I remember when I was at the Hopkins library reading about how IV mercurichrome was given for infections in the 1930's and how much it helped, and the lives it saved. This was people like Sir William Osler. Of course, it didn't help a bit. Mercurials and arsenicals don't do squat. Doctors were busy writing themselves checks which their benefit couldn't cash.

    I think most docs treating CP have no idea what they are up against and how puny the benefits of tricyclics, anticonvulsants, and morphine are. You can sedate CP people, but they are still going to be in pain.

    These arm chair researchers castigating pain patients are probably talking about low back pain. Since 85% of Americans get that, we aren't exactly talking about the identity destroying agonies of Central Pain. No doubt in the area of back pain, we could find some who may be exaggerating. This probably causes the pain doctors to get tired of listening, and they forget to move out of that mode when someone walks in who is dripping pain exciter venom.

    In fact, the low back people ruin the pain clinics for the life-threatening cases, where the patient has to REALLY struggle to just get to the clinic. The clinic really ought to come to their house--they are too sick to travel. So, if these jaded doctors think their assumptions about secondary gain apply to severe CP, they can take two running jumps and go straight to h___ (where they too will finally get to experience damnation)

    [This message was edited by dejerine on 10-06-03 at 02:17 AM.]

  3. #3
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    Helpful pain clinics increase pain.

    A recent article by Ben von Recklinghausen in the Pain of Clinical Journals implied that findings regarding CURABLE back pain were probably applicable to any pain, from any source, and due to any mechanism, whether mechanical, nociceptive, or even neuropathic, although no neuropathic patients were actually included in the cohort of patients in the study.

    Although Dr. Recklinghausen claimed to have found something new, certain critics stated that accusing patients of secondary gain was as old as the hills, and harks back to the days when very little was known, very little could be done, and so it was highly desirable to blame the patient, unless the patient were female, where it was considered bad form. The only alternative would have been to confess the doctor's impotence in treating pain effectively, which of course was not an option.

    Researchers found that women were better about talking about feelings, so when they described their pain as severe the researchers believed them. On the other hand, the failure of researchers to extend credibility to male patients demonstrated that men aren't so good at talking about feelings. Since they believed the women, they regarded help from spouses as appropriate, but since they disbelieved males they regarded help from spouses as "being suckered".

    It is somewhat troubling to see this fobbed off as research when there is important work to be done in neurotransmitters; however, patch clamping to track ion channels is a huge bother, so maybe it is more efficient in publishing after all to blame the patient for being a sissy and a malingerer (only the males of course). It's only pain. How bad could it be? Unfortunately, the authors were unable to get the same article published regarding diabetes, liver failure, and other conditions where those whose spouses gave a darn, seemed to be willing to let them and may have even gone a little easy on themselves. The editors of these rigorous journals told the authors their "article" was nothing but an opinion piece and refused to publish semi-ecclesiastical remonstrations in a scientific journal.



    It is hard to believe that researchers naive enough not to know about women's better ability to describe feelings would presume to be able to take the measure of males' pain, apparently lacking awareness that men can't talk about their feelings so well.

  4. #4
    Senior Member alan's Avatar
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    Great post, dejerine.

    My mother has stuck with me (poor woman.) Because of her (and not having figured out a way to put myself out of misery), I'm still here.

    Alan

  5. #5
    BASHING PAIN PATIENTS FOR FUN AND PROFIT

    1)Helpful doctors make pain worse.
    2)Helpful pain clinics prolong recovery.
    3)Helpful journals make doctors overly dependent.

    A recent study of patients indicated that those with pain sufficient to motivate them to go to helpful, attentive pain clinics have a longer period of recovery than those who do not. These two groups were felt to be comparable, by the janitor who cleaned up at night, and was substituting for the editor, who had become ill, but was independently getting well, thanks to his very inattentive, neglectful family physician and a spouse who couldn't care less.

    Originally a medieval article, updated from The Journal of Medical Alchemy, formerly entitled "Why Spoil your Patient with Clean Dirt" the piece stated that supportive pain clinics were a menace to recovery. The authors agreed that clinics should encourage doctors to be inattentive and unhelpful. Medical schools were encouraged to accept ONLY those who gave their motivation for applying as "I just want to neglect people".

    A follow up article gave as opinion that journals helpful to pain doctors were more likely to cause doctors to be helpful and attentive to patients--a horrid thing. Again, independence was considered the best approach. The journal asked doctors to quit relying on journals so much and live out of their own practices instead.

    In the final edition of the publication, the journal concluded that since helpful journals were encouraging pain doctors to be helpful, which would certainly prolong the recovery of pain patients, the only conscionable thing to do would be to discontinue publication of the journal altogether, in order to stop the vicious snowball effect and ensure the most rapid recovery possible among patients.

    The author/copyist has returned to his former job as Warden of the Gobi Desert Penitentiary, where he has reintroduced rigid neglect, which had become a bit lax in his absence (one wayward guard had begun to provide inmates four foot hollow reeds to suck water from the ground through holes in the sand).

    The webmaster of SCIwire has concluded that postings giving notice of helpful journal articles encourages prolonged visiting at this site and prevents independent searching of Google.com. Google has concluded that their search engine has made netsurfers less independent, etc. etc. etc.......The black hole of inattentive unhelpfulness will now swallow the entire internet.

    Either way we will hopefully have an end to the bashing of pain patients in the literature.

    P.S. What on earth does "low back pain" have to do with CP. About the same thing as a glow-in-the dark watchface has to do with Chernobyl, about the same thing as a snowball in the face has to do with an avalanche.

    [This message was edited by dejerine on 10-06-03 at 02:46 AM.]

  6. #6

    More Help Equals More Pain?

    "It is, however, equally plausible that the people who are doing more poorly are the ones whose spouses are more attentive, Fillingim says."

    Isn't it strange how equally plausible conclusions can get buried in an article and downplayed by the scientist performing the experiment when perhaps he had already made up his mind about the "correct" conclusion?

    Also, did they do some testing to see what the differences may be between how men and women perceive whether or not a spouse is solicitous? I don't think that answer is obvious.

    Personally, I truly hope they don't break their necks jumping to conclusions. They may end up with solicitous spouses and become malingerers like the rest of us poor slobs.

    Calico

  7. #7
    To Dejerine-
    "Warden of the Gobi Desert Penitentiary"? ROFLMAO!!! CP hasn't hurt your sense of humor, and I am grateful.

  8. #8
    The Parable of the Good Samaritan

    Link, Chapter 10

    29 There was a certain lawyer, who asked, "How can I avoid helping my neighbor?"

    30 And a real scientist, answering, said, a certain man went down from Jerusalem to a rehab center, and fell among torments, which stripped him of his clothes, and wounded him, leaving him half dead.

    31 And by chance there came down the hall, a certain author that way: and when he saw him he passed by on the other side

    32. And likewise a priest of the rehab center, when he was at the room, came and looked on him, and passed by on the other side of the hall

    33. But a certain Samaritan, a PhD at Yale, as he journeyed, came where he was; and when he saw him, he had compassion on him.

    34 And he went to him, and treated his pain, infusing drugs, and took him in his own car, and found him a place to live, and took care of him.

    35. And when he departed, he took out two hundred dollars, and gave them to the facility nurse, and said unto her, Take care of him, and whatsover thou spendest more, when I come again, I will repay thee.

    36 Which of these three, thinkest thou, was neighbor unto him that fell among the torments, which had stolen the man's identity.

    37. And he said, He that shewed mercy on him. Then said the real scientist to the rehab center poser doctor, Go, and do thou likewise.
    ________________________________

    When I had barely heard the words "Central Pain", I went to a neurosurgeon, who, when I told him I had CP, reached into his pocket and took out two hundred dollars, and gave it to me, because I could no longer work. I tried to refuse, but he insisted. I was his third patient with CP, and the former two had killed themselves. He asked me not to do this, to honor his gift, because another suicide would make him feel to much of a failure.

    Although I realize low back pain can create an impression that pain people are weak, the doctors at a pain clinic must realize they are playing with fire. If the patient is sick, they will believe the sign on the elevator that says, "Pain clinic, second floor", and may assume if they still have pain, it is not time to leave. Does the desire to get them to leave have anything to do with the fact the maximal amount of insurance has already been exhausted?

    I worship the ground my good doctors, like Bonica, Tasker, and Wall walked on. Their compassion was sacred to me. In a comfortless disease, like Central Pain, their humanity comforts me still.

    On a recent Oprah show, a Dr. Gupta? said the average time for a doctor to interrupt the patient is eleven seconds! How else could the Wall/McHenry components of CP have escaped the notice of many clinicians all these years. They certainly weren't listening, and they weren't even reading the old literature. Even S. Weir Mitchell knew the CP symptoms in 1876!

    I have certainly had my encounters with "How fast can I get rid of you" doctors, who, incidentally do NOT charge less for their non-care than those who actually took care of me. I try to forget these doctor fakes.

    I am sorry to see any publications which might imply, once again, that there is secondary gain in neuropathic pain. The term is undefinable, and mostly in the eye of the beholder. Many doctors in pain clinics have had back pain and go on anyway, and perhaps from their own experience, they think these patients should do likewise. However, this has NOTHING to do with CP.

    Perhaps I should point out that the expertise I have found at rehab centers about pain, by and large, is not at the level of a pain center. Only where these two branches of care integrate well, as in weekly patient conferences, rounds, and discussions, have I found the docs at rehab centers to grasp anything about CP. Dr. Young is truly exceptional to be willing to commit himself to our benefit. I wish others had his compassion, although he seems unlikely to get a job soon at the Florida Rehab Center, where they might regard him as "too soft" on pain. Thanks, Wise, for affording us the dignity of being humans.

    Again, let them spend a few days with Capsaicin being injected, and everything will change. Boy will it change! They will quit talking about secondary gain, and start jabbering about neurotransmitter research, like all of us CP patients do.

    I suggest anyone who is tempted to preach the profane doctrine of "secondary gain", read the posts of Skye, and see what colossal knotheads they are being.

    I really think hardened people should get out of pain management, as some of those happening onto their clinic are barely hanging onto life, and are in danger of being pushed over the edge if they receive rough treatment from those in whom their trust resides.

    You have heard of people who can't tell their head from a hole in the ground, and I wonder about authors who can't tell the difference between a universal condition like low back pain (concerning which anyone over fifty thinks they are an expert) from the extreme destruction of Central Pain.

    We all know back pain is common and usually you just have to deal with it, like taxes. But, you can't explain Auschwitz with taxes, and you can't explain CP with low back pain.

    The very fact that the article Wise questioned did NOT have a disclaimer, excluding from their conclusions the serious pain states, means to me the whole thing is an opinion piece, not serious research, and I wonder if the authors might simply be sanctimonious, blind posers.

    It is because we are so sick and low, and "half dead" that we are easy targets to pick on. They ought to get out of their white coats and get down in the dirt with us, go into public with scarce clothing, cramp when they try to move or even if they don't, writhe through an ugly night on sheets we cannot stand to touch, become nauseated as they eat, feel the pain of the bladder filling. Then, and only then, are they in a position to judge.

    I am actually too sick to do any more of these posts right now, so that should help all of you get well real soon. I fear lest any of might have found something in this post helpful, thereby prolonging your pain.

    [This message was edited by dejerine on 10-07-03 at 06:45 PM.]

  9. #9
    Thank you all for the discussion. I had similar thoughts when I read this article but wondered if anybody had the same reaction. While there is no question that pain and sickness does attract sympathy and positive reinforcement for pain-expressing behavior, and there are strong behavior modifying operants in such reinforcements, I am strongly against the generalization that all or most neuropathic pain results from or are prolonged by behavior modification. I am surprised that this article and slant is being promulgated and associated with the Clinical Journal of Pain.

    Wise.

  10. #10
    TWO MAIN POINTS OF THE HIPPOCRATIC OATH:

    1) First, do no harm (Primum non nocere)

    2) See that your patient suffers no injustice. (Apparently, they had unhelpful inattentives back then also)

    A statistician calculated that a patient's risk of coming out ahead vs. behind, with respect to their illness, did not reach 50/50 until about 1940. Hippocrates knew what he was talking about. Around then, antibiotics got going, the Flexnerian reforms finally sunk in, and the double blind study became more common, and Johns Hopkins set the example for the rest of the country.

    Pain medicine has been very slow to become rigorous. Several factors contribute. The specialty is young. Little is known about brain science. Few PhD's are trained to study neurotransmitters, and those who do often cannot find work. Also, like most humans, many doctors hate to listen to people complain about pain. This is when you have to give them a xerox of their med school applications where they swore, they "just wanted to help people". Pain doctors try to skirt this human tendency toward indifference, but certain articles make us wonder how well they are succeeding at this, or whether the stress of listening has converted the whole mass of patients into one big complaining horde, for them.

    If so, thank goodness for the researchers, who just keep going, like the battery bunny, and it is amazing what Haines and Coull have just published. (Oct 1 J Neuroscience, and Aug 21, Nature, 2003)

    Another reason for the lack of definition of what constitutes a pain clinic is that many pain states involve mechanical issues, meaning a neurologist at the clinic will be guessing if they don't have a neurosurgeon there. How do we determine what should be managed under the primary injury and what should be managed as Central pain. The multidisciplinary aspect is essential, but will become less so when scientists can manipulate neurotransmitters, at will.

    Another problem is that the disease, Central Pain, undergoes phases psychologically as the perception of the magnitude of the injury, and medicines difficulty in treating it, sinks in.

    Elizabeth Kubler Ross described stages of dying. I believe there are stages of Central Pain. They are hidden by the fact death is all or nothing and central pain is not. Most patients do NOT display ALL the Wall/McHenry components. The severity of any one component varies from patient to patient, most probably because there is a window between functioning and non-functioning in a nerve cell that is required for the nerve injury to manifest by pouring out pain signal.

    Reaction to the CP seems to evolve, in a way we could call stages.

    The stages of CP could be loosely listed as:
    1) What the heck is this?
    2) My doctor says I am crazy!
    3) I guess I must be crazy, since he says so.
    4) The spouse agrees I must be crazy
    5) I get some education and realize it is my doctor who is crazy.
    6) My spouse rats me out to the doctor, that I think he is crazy, so they both decide together that I am crazy.
    7) My spouse gets some education and realizes I am not crazy, but that the reach of CP is incredibly broad and basically ruins the whole shooting match of human traits.
    8) The spouse feels completely overwhelmed and decides there is really nothing to do and stops trying to help.
    9) The spouse becomes frighened at how sick I am and wants to get away, lest I sink my teeth in at some point.
    10) Articles keep appearing in clinical journals announcing there is really nothing there to get upset about, making those around us feel better, which position they will maintain, as long as we keep our mouths shut in reverence for the fact something is in print. Being very sick, it is most difficult to hold our own, when the science beneath us is primitive, undeveloped, and therefore VERY insecure and rigid.

    These phases are NOT the stages of low back pain. In low back pain, a spouse simply tries to help, to a greater or lesser degree, based on internal willingness, perception of need, and energy available. The spouse is not "spooked out" by the pain, like happens in CP. In the ordinary human mode, as opposed to the completely helpless, freaked out mode of CP, perhaps a researcher might be led to conclude "less is more" when it comes to care. Nothing seems completely outside the reach of ordinariness, so why not buck up.

    The human mind is brittle and will stretch only so far before it breaks. CP is unbelievable so it is not believed. That is why God created Capsaicin, to make believers out of low back pain doctors. Capsaicin releases Substance P, which activates NMDA, which is known to be involved in CP.

    Pain doctors, who have cut their teeth on low back pain, and have relegated neurotransmitter research to PhD's, develop some proprietary "METHOD" of "dealing with pain", based on their vast experience with low back pain patients, which they then wish everyone to subscribe to. This "METHOD" always involves some kind of "mind over matter".(Ignoring the fact that certain parts of the CP mind have been disabled) In other words, pain medicine, when practiced by those who DO NOT BELIEVE,is at the end, really ALTERNATIVE medicine, made up of "beautiful" thoughts, because there is no satisfactory treatment for CP. Alternative medicine is all they have got. There is no doubt that medicine which was designed solely for peripheral neuropathy becomes "ALTERNATIVE" if it is recommended with assurance to the CP patient, without any rational basis for doing so.

    If you go from one pain clinic to another, suddenly the tongues start clucking, how could you be so stupid to use THAT tricylclic, when in THIS clinic, we always use this new, EXPENSIVE tricyclic. (amitryptiline is about 15 cents a pill, while the newer tricyclics are about 2 bucks) They may say, "WHY haven't YOU tried this? Of course your pain is not better, you aren't using our dandy NEW tricylics". Never mind that no rational double blind studies have ever shown any benefit of the new over the old.

    The patient gets kind of a shell game. The cure is here under this tricyclic/anticonvulsant/opiate shell. No, it is under this one. No, it is under this one. We start on a wild goose chase and wind up demoralized at the end, having tried everything, but our pain is still essentially unchanged.

    What we do find benefit from is our sedative, usually given in tandem with the "pain meds". The sedative actually helps us, because it lessens some of the panic, which pain would otherwise cause. I can tell a palpable difference with clonazepam, and others have found benefit in different meds. However, the sedation comes at a tremendous cost, we space out. I have struggled to get by with less for a few days, just so I could respond to the article that was so off base.

    INSERT

    I must respectfully disagree that there is strong reinforcement for pain expressing behavior in severe CP. Since I am very grateful for the work Dr. Young does in encouraging us, I hope I can do so without being annoying.

    I think the term, "pain behavior" applies to MILD cases. The problem is that there really is NOT a smooth linear relationship between expression of pain behavior and the degree of pain. It is more quantal. We hit a narrow place and must jettison something that is part of us, and then, who are we? As we pass waypoints where resources are stripped away by the pain, we lurch into new modes of thought, and a new us, in order to survive the torture.

    Eventually, these adjustments are not pain behaviors AT ALL. They are survival behaviors. We beg God a hundred times more than we beg our doctors.

    It is true that a child may saw "owie" to get a bandaid reward, but if you poured gasoline on the child and ignited them, they would display only pain behavior which is aimed at escape from the pain. That is the difference between minor and dreadful pain. It is in fact, EXACTLY the point. BECAUSE pain doctors do NOT have effective blockers of neurotransmitters, their treatment amounts to nothing more than a "band-aid" as it were, and rather than admitting this to themselves, and perhaps because we accept such treatment from their hands, and are too sick to demand more, they automatically conclude we are "owie" patients. This misses the mark by a universe.

    The pain doctor must stretch his imagination to a state where the "capsaicin effect" is everywhere, like the Matrix.

    Ie. CP is everywhere. It is all around us. Even now in this very room. You see it when you look out your window. Or when you turn on your television. You can feel it when you wait at the bus stop. When you open a magazine. CP is freaking everywhere!!! The researching doctor must ponder how deep this "rabbit hole" goes.

    The doctor must decide whether the carnage, the brain procedures, the trips to Kevorkian, the mortgages given up to pay medical expense, the broken families, the surrendering of our dead bodies at the doorstep, is for a reward, or the only comment we have left. If the doctor guesses wrong, he becomes a monster, because he has so much power. So, Dr. Pain Specialist, reach for the capsaicin, and this conversation will end. We will welcome you to the desert of the real. You will wish you had taken the blue pill for at least the 30 minutes it takes for the capsaicin to wear off.

    Since doctors' TREATMENT is palliative only, that is, a "band-aid", they do the Pavlovian association thing, and without thinking, assume efforts to escape pain is but a veneer and is therefore, "pain behavior". In other words, they mistake THEMSELVES for US. Their treatment is not particularly dramatic, so our symptoms probably are not either. THEIR TREATMENT is low grade, but CP is anything but low grade. It is life threatening at a severe level.

    IT IS THE MAGNITUDE OF THE PAIN, NOT THE CHRONICITY OF IT, WHICH DETERMINES WHETHER THE CLINICIAN WILL ENCOUNTER PAIN BEHAVIOR, OR WHETHER HE WILL ENCOUNTER SURVIVAL BEHAVIOR.

    We don't accuse patients of gallstone behavior, or appendix behavior, or dental behavior, or cancer behavior, or alligator attack behavior. Why do we attach this pejorative adjective phrase, "PAIN BEHAVIOR" to simple ordinary pain response?

    What rewards does the clinician think he sees, and what is he providing? The chance to go in public with less clothing than is appropriate? Affording the patient the honor of meeting someone who has little to offer? Pain behavior is something which is observed in the physician, not the patient, when things get really bad. And things are as bad as they can get in severe CP.

    Albert Schweitzer said, "Pain is a more terrible lord of mankind than death itself".

    So if most people would rather be dead, what possible reward could the patient be seeking beside simple pain relief. We don't go out socially, we can't wear clothing.

    Early in CP the patient may be seeking simple acknowledgement or validation, but this is only to help heal the terrible abuse and rejection many have received at the hands of unlearned physicians who have ridiculed and criticized them. Once CP has had its way with a person for years, they are NOT looking for validation, they are hanging onto themselves desperately and trying to fight the dark urges.

    If they could be placed on suspended animation until it was time to go, many would chose that over the hell which NMDA has created for them. Maybe we should call this "NMDA behavior". That is why I recommend a trial of capsaicin subQ, so the doctor will NOT think it is a band-aid type of problem that is being dealt with.

    If we see someone on fire but we have no blanket to throw on them, we don't sit and say "hmmm--yep, sure enough, pain behavior." We say "Oh! Lack of blankets!!"

    We politely listen to "the lecture" doctors often give about "coping through the power of our minds", but all the while we are wondering what we could do, say, or how we could behave which would cause the doctor to actually encourage research, somewhere. That is all we want. The doctor can hate our guts if he will just see to it that someone somewhere figures out how to block pain neurotransmitters.

    My psychiatrist says I cope with the pain by intellectually talking about it. This is not pain behavior, it is an attempt to withstand pain. Big difference. If you start with the assumption that ALL severe CP patients are somewhat suicidal, but are trying to survive, surely our approach will not be seen as pain behavior, but survival behavior.

    Severe CP cases do not differ from what drives all who are ill and want to get well.

    I remember Bette Lou Hamilton who was treated at Duke Pain Clinic, had had ten surgeries for her pain, without benefit, and finally ended up taking her life.

    I suppose her surgeries were pain expressing behavior but no more so than say gall bladder stone expressing behavior leads to a cholecystectomy, and the motive for Bette's surgery would simply have been pain, not some abstract reinforcement.

    Pain expressing behavior to attract reinforcements applies, in my opinion, to less severe pain only. At a high enough temperature, there is no such thing as matter, the heat dissolves atoms, protons etc. You do not speak of matter at 200 million degrees. The human psyche dissolves after enough pain, so we must not talk of "pain behavior" then, there is not enough humanity left for such things to form. There is very little ego desire left in severe CP, and therefore, no reinforcement can lift them. Being dead, Bette Lou's supposed "pain expressing behavior", her suicide, could not have received any reinforcement. How do we know it was not simple agony she was attempting to escape. Why compare this "behavior" to something like "acting out" in teenagers. Hurting is NOT misbehavior.

    We are not writing to this website to receive reinforcements, and our writing is not expressing pain behavior. It is simply an attempt to understand the terrible harm which has come into our lives. No reward is possible beyond some pain relief, or at least some hope, or maybe some validation.

    I am glad to see Dr. Young does not think neuropathic pain is caused by reinforcements, but then, there was never any reason to think it was. It is apparently caused by upregulation of Nav 1.3 ion channels, known to be involved in neuropathic pain, and a drop in the production of FCC, a chloride transport molecule, preventing priming of the inhibitory neurons, such that inhibition is converted to excitation. We need not look to psychology to project what these biochemical events will lead to.

    Academics lean on each other to quite a degree, leading to axioms which do not hold water in severe CP, because when severe, it is outside ordinary pain observations. "Positive reinforcment" and "pain expressing behavior" could easily become pejorative terms. They should be abandoned where severe CP exists. Just as the FDA shouldn't worry so much about "addiction" in terminally ill cancer patients.

    We behave exactly the same whether anyone is around or not, except we try to act nice at the pain clinic, which is about the only place we ever go, where we try to measure up. That is ironic. Where we should be able to let down a litle, we will do whatever it takes to avoid, "the lecture".

    The acting nice, and even being "cheerful", is NOT "pain expressing behavior", it is an attempt to get the doctor to listen patiently to something which has no vocabulary. We know it is a reach for the doctor to understand. We adopt his terminology so he will be comfortable talking, but actually our perceptions are not like noxious pain, and making it worse is the fact our pains are jumbled together. So we have a hard time describing them.

    However, our acting nice may mislead the doctor into thinking we are better off than the back pain person, who is acting like the pain is killing him/her. You can see how an objective method of pain measurement is badly needed, so the doctor can readily tell whether a certain behavior is pain expressing behavior or not. When that measurement arrives, pain doctors will be shocked at the level of pain CP sufferers have been enduring.

    I realize I am overdoing it, but I honestly feel every pain doctor should have a capsaicin injection BEFORE they ever speak to a severe case of CP, in order to understand neuropathic pain. Then, they must in their minds expand that small wheal to the entire body to understand CP.

    A researcher who is perhaps the leading expert in peripheral neuropathic pain has said, "All bets are off in Central Pain". That is correct, and certainly for the severe cases, how CP should be viewed, as not really like PN injury.

    Having said this, thank you so much for running this site. It is very democratic to allow such material.

    END OF INSERT

    We are grateful for the low back patients, because they provide enough revenue to keep the pain clinics open, but they actually have nothing to do with us.

    The spouse of a CP patient is NEVER oversolicitous. Rather, the brittle point having been reached early, these mates have nearly always given up and don't even try LITTLE things that would help because they feel like it would be spitting into the wind.

    Therefore, if you tell the spouse of a CP patient, "Oh, you must not be so helpful,or you will encourage dependence", it makes no sense. It also makes no sense to say it would PROLONG our illness, since CP is lifelong, whether we have a hundred spouses, or none.

    I would venture to guess EVERY author of that opinion piece on "supportive spouses causing prolonged pain" would not be able to answer a simple quiz on what the symptoms of CP are, let alone what the history of treatments, with the constant revision, as the failure of each succeeding "remedy" has been unmasked, and has been abandoned.

    Finally, I doubt whether any of them could give an intelligent review of the recent articles by Jeffrey Coull in Nature, or by Haines in J Neuroscience, although these two articles are the MOST important ones ever to be published on Central Pain.

    So pardon me if I choose to characterize the conclusions of the authors as benighted, stupid, and out of date, insofar as they might extend such conclusions to Central Pain. These rehab authors need to leave their military prep/linebacker preparation academy and travel to the PAIN CLINIC at UFla, Yale, San Diego State, UCSF, UTMB, or wherever else neurotransmitter blockers are considered an urgent need, and CP is recognized as life threatening. CP IS A PREDATOR.

    And as for their comments on low back pain, I must respond that I have a covered wagon to loan them, in which they can travel to Western Kansas and stand facing the rear in a cornfield somewhere, and present their views on "Pain Management" in an appropriate forum, but before they do they might want to read Andrew Vachss novel by the same name.

    Of course, Vachss is fiction, but to the sincere regret of their patients, what THEY are writing is also fiction. They may want to be warned that Vachss is violent, but nothing like the violence the indifferent expert does to the CP patient. They cancel their insurance, destroy their families, and abandon their ethics in refusing to help fill out any forms, since all of us must have forms completed.

    And so being used to gory slaughter, having reaffirmed that man is the most deadly species, they blithely rework the old myths, and count as nothing that which is almost beyond comprehension. Yes, the vast emptiness of western Kansas is the place for such dangerous and violent game, unless arrangements could be made to fly them to remote Africa.

    I doubt anything could waken these people from their deep sleep, but if any of them should happen to develop CP, they should plan on a rather cool reception from their colleagues who will regard them as having lost their minds.

    Considering that Roland Worz has now shown that schizophrenics with lesions in the thalamus have CP, called "cenesthetic pain" in Germany, the doubter colleagues may have some morsel of truth in their misunderstandings.

    In the meantime we classify their recommended "neglect" and "inattentiveness" as "Alternative medicines", and low amongst them at that.

    There are lots of untruths which circulate about severe central pain. Some of them are killers and therefore are damnable lies.

    Mark Twain said, "A lie can travel around the world twice before truth has even had time to put its boots on".

    For those who think CP is nothing special, just another pain, there is a syringe of Capsaicin subQ waiting for you at the nearest CP research center, where you can find TRUE ENLIGHTENMENT.

    If you really want to press it, we can arrange to make those injections permanent, or, if you are absolutely determined to prove how convinced you are of your curing ways, just have your cord lasered, and then you can PROVE your inattentive neglect theories once and for all. This will be easy since you will be too sick to get to the clinic and they will not want to come to you, so there will be a LOT of inattentive neglect. You can also probably kiss your spouse goodbye.

    The Haines article will tell you in plain terms how to induce CP in yourself. However, you will probably NOT get published then, after your enlightenment, because clinicians tend to hang onto old ideas and to beat their dead horse quite a while. Since Dejerine published in 1906, and Riddoch published in 1930 pretty much the whole thing on CP, they are certainly energetic to keep going at the "the pain is all in your mind" thing.

    Did they really need to go to med school to come up with this idea of neglect? We expect no help from other specialties, but "PAIN DOCTORS"????? With friends like these, who needs enemies. How much effort have they expended avoiding the major journals, like Science and Nature, (which have published many good articles on the neurochemistry and psychology of pain, including some by Floridians) in order to hold fast to their Homo Australopithecus ideas. Wait, even Australopithecus did not desert their own. We may have to go further back to some Lemurian species, no even further.

    I suggest we give these authors what they most recommend, to pay no attention to them at all.

    [This message was edited by dejerine on 10-08-03 at 06:08 PM.]

    [This message was edited by dejerine on 10-08-03 at 10:45 PM.]

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