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Is nuero pain measurable?

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  • #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.......

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    • #17
      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on your injury level) of your once "normal" sensation has been forever altered by a spinal cord injury and has been replaced by a mixture of spotty sensation, areas of no sensation and significant chronic pain, how could someone with SCI ever use the standard 0-10 scale??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...
      C4/5 incomplete, 17 years since injury

      "The trick is in what one emphasizes. We either make ourselves miserable, or we make ourselves happy. The amount of work is the same.” - Carlos Castaneda

      "We live not alone but chained to a creature of a different kingdom: our body." - Marcel Proust

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      • #18
        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.
        Alan

        Proofread carefully to see if you any words out.

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        • #19
          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.

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          • #20
            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 10...you 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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            • #21
              I agree with everything that has been said here. But even when you get pissy with the PM doc they label you as non compliant and start refusing to help you. And this is what we know as being cared for by a doctor who's job is just that to care for another human being. If some of these docs treated a animal the way they treat their patients they would be in jail for animal abuse. I wish their was some way to change the pain scale to make it so we could be cared for and not suffer by some prick that judges your pain if you smile. in my opinion 0-10 is very flawed and needs to change.

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