dejerine
01-14-2009, 04:37 AM
"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?
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?