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Thread: If you don't get bitter

  1. #1

    If you don't get bitter

    "If you don't get bitter, you will get better". That is the quote that was handed to me recently.

    As I thought on it, I felt I did not agree with it. In fact, the ideas are reversed, "If you do not get better, you may well get bitter". I am more than 20 years going on severe central pain, and have not seen serious money allocated for research into nerve injury pain. (Work on ordinary pain meds does not qualify) What should my reaction to that be? This question cannot be answered to the satisfaction of others, because there is not any way to express what level of pain I have been subjected to. The range is limitless. I may be faking or I may utterly lack the words to convey the pain level. (1-10 notwithstanding)

    We cannot measure pain. We imagine the level by reference to shared human experiences. If other humans have no shared experiences with CP, we cannot start the show. If Kevorkian can pile up dead bodies of those with central pain without the public taking any notice of the cause, then a way must be found to alert the public by other means. If dead bodies don't convince you people are hurting, nothing will. The only thing we have going for us are the little lab rats given CP who chew off their legs. This convinces the PhD's, although those outside the lab seem impervious.

    There is no shared reference for central pain, so to another, I may be exaggerating wildly or totally lack the language and therefore may be consistently underrating as to the pain level.

    Those with migraines don't like them but as someone with CP constantly in the dura, which surrounds the brain, I figure it is at least as bad as a migraine. I am willing to guess if migraine sufferers also burned all over the surface of their body and on all mucous membranes, they would consdier the migraine pain secondary. Is that a reference point?

    I can only say I have been inadvertently operated on while awake, and the central pain is worse. Not worse as to intensity (since open cutting pretty much bulges the far end of the 1-10 scale), rather it is worse as to the total body blanketing and the persistence, the omnipresent burning, which will not relent. I would rather be operated on awake every month, than to have the central pain continue. This is about as close to language as I can get.

    I suppose someone could have capsaicin injected over every square millimeter of their bodies and cavities, inside mouth tongue and urethra and maybe get an idea, but of course, that would be torture. The public has no reluctance to allow indignation over torture. It is a moral wrong. However, there seems to be no parallel concern about serious pain states, which are actually worse, and last much longer. In the case of some high cervical injuries, the pain is everywhere, and no place escapes the neuroinflammatory process which causes the pain nerves to fire like an insane klieg light.

    I am all for distraction, and I don't see how bitterness would help anyone. However, the squeaky door gets the grease, so some sort of open reaction to SCI pain seems almost a moral obligation. How else can it become known, and a cure sought? Paralysis is known, central pain is not. I am not bitter about motor loss. I do feel that pain is a stepchild of medicine, so far as dollars for research go. This is the kind of infrastructure I hope to see developed.

    Fewer contracts between patient and pain doctor about opioids (they do not affect my own CP), and more contracts between NIH and private researchers to actually cure nerve injury pain.

    Somehow I rarely like pain platitudes. They sound suspiciously like the person who upon hearing of an horrific experience says "I know excactly how you feel". Verbal bandaids are not fit remedies for life threatening pain. The only thing I like to hear is if someone asks "What can I do?" and I tell them to write to their congressmen and request funds for NERVE INJURY pain. THAT actually makes me feel better.

    How do the rest of you feel about this?
    Last edited by dejerine; 01-15-2009 at 06:17 AM.

  2. #2
    I just say:

    "When life gives you lemons, make lemonade"

    No,really, I can't stand perky blow-off platitudes either.

  3. #3
    I absolutely agree with you that since I've had autonomic dysreflexia, my central pain will never be more than an 8. I can practically be in tears from that pain and not want to talk to anybody but it doesn't compare to what it feels like to have your head being slammed on from both sides by a hammer which is what autonomic dysreflexia feels like. And I won't even give that a 10 because if that's as bad as it ever gets, I have suffered worse than people who have been tortured and I don't think that's true. And my pain these days is nowhere near as bad as it was when I used to smoke.
    C-5/6, 7-9-2000
    Scottsdale, AZ

    Make the best out of today because yesterday is gone and tomorrow may never come. Nobody knows that better than those of us that have almost died from spinal cord injury.

  4. #4

    Dijereine

    youve ountdone yourself, kudos, accolades for this gran Exito

    on point at everyturn yet i couldnt stop laughing , yay, i bow before you o Master

  5. #5
    rybread,
    I am sorry your AD is so severe. I would actually like to try to understand what you mean about the banging in your head. Are you referring to spasmodic jerks which cause potential injury or are you talking about jolts of pain from no particular source? How long does it last. Where are you feeling the AD in your body? Educate me. Mine manifests differently.

  6. #6
    i hurt---i sleep, not well---i hurt--i eat, not much--i hurt---i weep, alot ---i hurt----the people i love---i hurt

  7. #7
    Quote Originally Posted by dejerine View Post
    rybread,
    I am sorry your AD is so severe. I would actually like to try to understand what you mean about the banging in your head. Are you referring to spasmodic jerks which cause potential injury or are you talking about jolts of pain from no particular source? How long does it last. Where are you feeling the AD in your body? Educate me. Mine manifests differently.
    I get it maybe once a month if we don't remember to change my catheter every two weeks. It will clog up and give me severe bladder spasms which eventually ends up causing severe autonomic dysreflexia with my blood pressure going up to 220/180 until it is fixed. I've had to call 911 a couple of times when I was alone and can't get ahold of anyone but not for years fortunately. It also happened a couple of times in the shower when my balls were washed to vigorously, but it usually doesn't last very long..
    To me it feels like someone is banging on my head from each side with a hammer, I can feel my pulse drop (and hear it). I get really spastic, start to sweat and my head gets really really hot. It takes about 15 minutes to get over that when it gets really bad. I keep clonidine in my bag in case it happens while I'm out and about which has happened a couple of times before.
    C-5/6, 7-9-2000
    Scottsdale, AZ

    Make the best out of today because yesterday is gone and tomorrow may never come. Nobody knows that better than those of us that have almost died from spinal cord injury.

  8. #8
    Moderator jody's Avatar
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    no, the headache with ad is pounding, blinding, a really bad bad headache. it is really pounding and I think the both sides thing refers to the way it pounds on the back sides of the head.

  9. #9
    Rybread and jody.

    When you get the headaches, does your head feel swollen?

  10. #10
    I thought of a new comeback for the incredulous who say "You look good. Do you have a lot of pain?" My answer, "Does Blagojevich have a lot of hair?"

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