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Thread: Is nuero pain measurable?

  1. #11
    I can see both sides of having an objective measure for pain.

    It would be highly beneficial to be able to 'prove' to the disbelievers that I'm experiencing pain in the 90th percentile even though I'm not wailing and gnashing my teeth or displaying other indicators they look for in those with acute pain.

    My fear, however, is that this objective measuring tool would then become subjected to the purview of a panel of experts [none of whom are people in pain] that will develop 'abuse prevention guidelines' that would only allow those in the 95th percentile and higher to receive narcotic pain medications and then only if every other form of treatment fails to lower their pain by x number of percentiles.

    @Kyle -- while your question is pretty straightforward, the answers aren't. There just isn't a utilitarian medication, i.e. one that gives the greatest relief to the greatest number of people over the longest period of time. Everyone responds differently to different meds, so the only way to find out what, if anything, will benefit you is through trial and error.

    Many of us take a combination of narcotic and non-narcotic drugs for pain relief. I've just started taking take a long acting opioid [methadone, which some research shows is more effective for central pain than other narcotics], gabapentin, and amitryptiline. This combination has toned my central and nociceptive pain down more than anything else I've used in more than 20 years of searching for relief.
    It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

    ~Julius Caesar

  2. #12
    understand I'm in a dark place but ... i'd like to put their balls in a vice, i had cancer and checking your balls by squeezing them is almost as bad as the crusing pain I get.

    I'd like to douse them with lighter fluid or gasoline and light them up and when they scream "enough, I get it", walk away.

    I'd like to take an electric drill to their back and not stop.

    I'd like to thread a needle from toe to lumbar with glass sheathed cable and heat it up red hot, hook it to an electric outlet, and just pull it back and forth.

    I'd like to get a nail gun and shoot them all over.

    I'd like to somehow spasm everything from their nipples down so they clench thier jaw and break their teeth

    then ask calmly what is your pain level and when they say 10 say "really?you look sooooo good. mmmm OK 2 tylenol" and walk away for three hours and come back and say how are you now? and then recommend they take a course on pain management, meantime keep it all up.

    meatime my wife is planning a trip to France in the next room with a friend, a trip I can't do.

    fuck my life and fuck the world
    Last edited by bollefen; 03-28-2012 at 06:33 PM. Reason: didn't include enough torment

    The Ketamine Kitty

    All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

    Next time I die make sure I'm gone,
    don't leave 'em nothing to work on JT

    And I ain't nothin but a dream JM

  3. #13

  4. #14
    Senior Member Cowboys_Place's Avatar
    Join Date
    Dec 2005
    Northern California
    I've been asked the pain scale 1-10 to many times over the years and so I ask have you ever hit your thumb with a hammer, banged your head on a open cupboard door or burned your fingers on a hot plate if so then multiply that by 100 and you'll know a little of what I feel except soaking it in ice or rubbing it doesn't make it go away.
    Courage is being scared to death but saddling up anyway. .(John Wayne)

  5. #15
    Hey Bill,

    Maybe what is going on is that nociceptive (ordinary) pain has a frame of reference in the world, since most people have had a rather painful experience of some kind and so 1-10 has a little meaning, although nociceptive pain is not really addressed by the 1-10 either, but is a good start for how the person is feeling.

    With neuropathic pain, in an indefinable way, coping strategies are uncertain. Results are inconsistent. No medicine really stops it, at least not the central pain type of neuropathic pain. In many people it is always terrible, so we don't like the assumption that there is some peak point of pain, represented by the number 10. Central pain doesn't seem to recognize the barrier, and what makes it formidable is that it can come in many forms and aspects, many of them indescribable and almost unbearable and unceasing. I can at least confront nociceptive pain, which I know and fits logically, as it were, in my brain. Central pain is like a raging maniac in the pain system. We don't like to convey upon it the rationality of a 1-10 scale.

    We also don't like the assumption by others that we could not really be living with the level of pain we claim, since we in fact DO have to live with it. They allow us a "10" and then we are allowed no more. The durability of central pain is not typical of nociceptive pain, so its reach into the self is not really appreciated by those who do not have it.

    Just so you will know, I also am "looking so good". In fact, I am "lucky" too, and of course "God chose me" for this special teaching by pain. All this via the mind/body.

    I am one of those who had an unfortunate experience of being paralyzed but awake during surgery. I documented this by telling the surgeon everything he had said during the surgery, the number of skin spreaders he used on my neck, etc. as well as the musical numbers he was playing on the stereo while he operated. I used to try and help others get that central pain is bad by saying central pain is worse. It did not have the desired effect. The listener then disbelieved BOTH the central pain, AND the awake during surgery episode. Minds are brittle and will stretch so far before they fly to pieces like glass.
    Last edited by dejerine; 03-29-2012 at 01:57 AM.

  6. #16
    I think back through the years, and how my pain has changed.......I remember it was about 2003 when the pain started just at night.......then it gradually got worse. I thought it was a ten then! After surgery in 2006 the pain became 24/7, and I wondered how anyone could live through this! That's when it went from bad to worse and back again with no rhyme or reason.

    Since 2006, it has gotten a little worse every year. Each time it ramps up, I wonder how much more can I take! How much can anyone take! Does it ever stop! Will I lose my mind one day, or just go on as I am! Do we become use to the pain we have? Yes, we do. Does'nt make it any easier to really deal with on a lot of different levels. We tend to lose the ability to actually live a decent life. It gets hard to concentrate, move, and just enjoy life in general. It takes all of your energy to just exist. You dread anything that is going to take any kind of extra energy or movement.

    To someone who does'nt have this kind of pain, stubbing your toe would be a ten, but to someone fighting neuropathic and central pain stubbing your toe is nothing. So I see the need for the doctors to have the one to ten system, but it in no way can measure pain in the sense of comparison to one another. Too many times I've seen people in the medical field just look at me with total disbelief. Makes it hard to be treated, plus the fact we have no real medication for this type of pain. I hate that it is all guess work and trial and error. Mostly error.......

  7. #17
    Senior Member
    Join Date
    Jun 2008
    The more I think about it...neurogenic pain is really not measurable on a "regular" 0-10 scale.

    When 75% to 50% or whatever percentage (depending on your injury level) of your once "normal" sensation has been forever altered by a spinal cord injury and has been replaced by a mixture of spotty sensation, areas of no sensation and significant chronic pain, how could someone with SCI ever use the standard 0-10 scale??

    After all, this scale is intended to be used by people who haven't had spinal cord injuries...

  8. #18
    Senior Member alan's Avatar
    Join Date
    Jul 2001
    Baltimore, MD
    I just want my guillotine. Or a carbon monoxide overdose. My sensations aren't believable, even by me. My pains apparently will continue to creep further upward in my currently spared neck as the "scar tissue" or whatever the non-syrinx hell it is in my neck keeps growing (and also taking taking my movement with it, as it's been doing.) I feel like a terminal cancer patient who isn't terminal.

    Proofread carefully to see if you any words out.

  9. #19
    Senior Member bigtop1's Avatar
    Join Date
    Jan 2009
    Greater metropolitan Detroit area
    I agree with everyone on the pain and discomfort experienced with neuro pains. Mine are in my left knee. Even a slight touch or soft breeze can instigate it. What puzzles me is that I can take motrin, a simple n-said to remove it for a period of time. At this stage in my life I haven't needed anything more. I'm grateful for that.
    I refuse to tip toe through life, only to arrive safely at death.

  10. #20
    Quote Originally Posted by darkeyed_daisy View Post
    I don't think so accurately.

    I thought I was understood and was not.

    I would like to take a brillo pad or a steel wool to my pain management docs leg and then pour alcohol on it....then stab him with an ice pic or a tattoo machine. If I did this on say a 4x4 area of his innermost thigh, you know the most tender place. I think for an hour and that would be enough.

    Then say how you feeling doc? What's your pain scale? Can you spell supercalifragilistupidipstickdumbassidiot backwards and forwards seven times while writing the lines of your favorite poem on this piece of paper?

    So what is your pain now doc from 0 to know 10 is the highest?

    But you are still smiling, how can that be if you are in pain?

    Its like the dog up the street that is eat up with fleas....he doesn't know any other way to live except to keep scratching. The poor dog's never lived without fleas and if you took them away, he would still scratch.

    But I wish we had a better pain scale and a more accurate one Liz
    LOLOLOL! and MUhaHAhaHAha. THANK YOU FOR THAT LAUGH. That is one of the best tests I have ever heard for "showing" A "Dr" the pain I feel and to try and make them understand. I really think that I shall bring that equipment and testing supply along for my next PM visit. Not to actually use...unless he would let me ...just for show and tell and to see the expression on his face. MAYBE...Just MAYBE, he could grasp the idea of this hell.
    Has it been five years yet? ..........

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