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Thread: Describing neuropathic pain in legs - a picture is worth 1,000 words!

  1. #1

    Describing neuropathic pain in legs - a picture is worth 1,000 words!

    I find it difficult to describe the severity of neuropathic burn in my legs. No matter what words I use I mostly just get blank-looking nods and "oh, that does sound bad."

    So I found this pic and I keep it bookmarked. And when I'm curled up on the couch with eyes pinched shut and teeth clenched, and people ask me what's wrong, instead of trying to describe the pain I can just show them this pic, and they get it.

    WARNING, graphic pic:

  2. #2
    Senior Member michaelm's Avatar
    Join Date
    Aug 2001
    montville nj usa
    Wow! I was just trying to describe the pain to my friend. I will bookmark this also.

  3. #3
    Wow. Laz - where did you find that picture and what made you look for it?
    That is a great picture in that it contrasts the fact that neuropathic burning is invisible to all observers other than the person experiencing it. The most you could objectively measure would be a frown, a groan, lunatic behavior, maybe pain related hypertension. If only it did look like that picture, the problem would get greater attention.

  4. #4
    The picture is a brilliant idea, Lazlo. The words I use to describe my pain are really quite meaningless to most people because they don't have any frame of reference for what it feels like to be stabbed, shocked, burned, etc. Showing them something and letting them fill in the details with their own experiential knowledge is so much more effective -- even if their experiences pale in comparison to what I feel.

    Jon is so right -- if what we feel were as visible as the lesions in that photo, there would be greater understanding and attention. I damn well guarantee you that no one with those visible burns would ever be sent to a shrink to make sure their pain isn't psychosomatic or the result of depression, and they'd *never* be told to come back in two weeks if their current pain meds don't help.
    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

  5. #5
    YES!!! Where did you find this.... and was there one of the whole body??

    T8-9 according to latest scoring.......
    since 1/3/04

    I am the best at being me. No matter how that happens to be!!

  6. #6
    I've been thinking about this idea all afternoon, and the more I think about it, the more I appreciate it. Lazlo, my friend, it's your week for the CC Brain Award.

    Becky, I was hoping you'd see this. Until you can find a new pain doc, I think the PIWATW approach to describing your pain might be just what that current yutz you're seeing needs to shock him out of his complacency.

    Of course we always run the risk of being told we're just being overly dramatic by using shock photos like this (moreso with medical folk than friends and family), but at least we know we'd have their undivided attention by flashing images like these.

    ~Off to look for images depicting my kinds of pain...hoping it won't be too hard to find pictures of people with their leg expanding until the skin splits, an armpit full of thumbtacks, and a knitting needle jammed into their butt cheek and hip joint...wondering if I can Photoshop those plus pics of the other pains I feel into the same image to illustrate that these sensations happen all at the same time~
    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

  7. #7
    THC: Brain Award, me? Puh-leez! But thanks!

    Becky and arndog: My original post isn't worded right. I didn't go looking for the pic, I just happened across accidentally. There wasn't a full body version. The original pic was uncensored, I added the black box because the guy's genitals were unscathed. If he'd been hit there too with whatever caused this mess I wouldn't have added the black box because, at least in my case, my genitals burn just like my legs. Here's the original for those who don't like censorship.

  8. #8

    Thanks for sharing the picture. While we wouldn't wish it on him, we sickos are sympathetic, but relatively unmoved by the overall plight of this guy whose wounds will heal in a couple of months. Twisted by no fault of our own. If anyone reading this is not twisted, wait a couple of decades and see how central pain can remodel your mind. I am exaggerating, as actually I find myself VERY sympathetic and engaged at the pain of others, much more so than when I was running around thinking I was lucky and always would be (My body is close to being named as a National Monument to luck, with many endorsements, thanks to CP).

    The genitals are distal structures, ie at the end of nerves, and so they burn more intensely, just as does the tip of the nose, lips and distal reaches of the mouth and tongue, for those with high lesions. Most common remark if I say my legs and feet burn intensely--"You are lucky it isn't anywhere else---" People assume the best. If I keep going and mention other parts, their patience wears thin, the eyes glaze over, and I am handed yet another copy of Sarno's book on the mind/body, or possibly referred once again to Job, whose friends reacted just like the person telling me to read the book of Job. Hence, a Job's Comforter is not a comforter at all. I make it a practice to automatically refer them to Cartwright's Book of Neuroanatomy, to return the favor.

    The trigeminal nerve pain tract in the face descends in the Quintothalamic tract to about C2 cord, where it joins the body pain tract, the substantia gelatinosa* and then ascends. Mere sensation on the face, such as touch, does not descend but goes straight back into the brain stem. Go figure. Pain gangs up.

    Hip Crip,

    Yes! Not a drug seeker and not a malingerer/hysteric, and not LUCKY (whereas WE ARE LUCKY--I have this on the word of quite a few people). And his mind/body isn't involved although you can never be too careful about this as the mind/body is so prevalent after cord injury. Strange that it never made an appearance BEFORE cord injury. Bad timing. Paralytics don't need the grief. Telling him to read the book of Job is probably not the most appropriate response either. It would be okay to tell him God is punishing him for some misdeed, one can only guess what, possibly for being so hairy.

    I really like your idea of photoshopping a combination. We can just hand that to the clinic and see what they make of it. I think a mockup of smoking steaming flesh from an acid burn would be good if anyone could find such a thing. Maybe just on a piece of meat. Burning meat is what my legs feel like. My lab partner in Quantitative and Qualitative Analysis in college once spilled nitric acid on me. The Central Pain feels closest to that, although the mix of noxious sensations cannot be described. The evocation of burning by abrupt cold air, or occlusive light touch, would not make sense to anyone either. Actually I think I am approaching body/no mind.

    *From Wikipedia: "The apex of the posterior horn of the gray matter of the spinal cord is capped by a V-shaped or crescentic mass of translucent, gelatinous neuroglia, termed the substantia gelatinosa of Rolando (or SGR) (or gelatinous substance of posterior horn of spinal cord), which contains both neuroglia cells, and small nerve cells. The gelatinous appearance is due to a very low concentration of myelinated fibers."

    The small nerve cells Wiki is talking about are C fibers, home of the famous and evil TRPV-1 ion channels, where fatty acids form and Central Pain is nurtured. planet Capsicum, the devil's summer home. The neuroglia are what manufactures inflammatory chemicals,such as brain derived neurotrophic factor, or BDNF, thought to help fan the flames in central pain. BDNF has quite an effect on the nerve fibers. The purpose of inflaming nerves to injured body parts is thought to be to keep anyone from touching or using those parts, so they can heal, which the cord does not. The guest has worn out its welcome in central pain, and that is for sure.
    Last edited by dejerine; 06-07-2010 at 03:16 AM.

  9. #9
    Sometimes my neuro pain is so bad I just start popping pills until it's gone.
    I hate taking pills and it seems like one pill can relieve the pain one night
    and then not work the next. Maybe the pills don't help at all. Fortunately
    I only have to deal with it a couple nights a week. I have a constant tingling
    but I wouldn't describe it as pain.

    I've never been able to describe the pain to people either. There'd be a
    treatment for it by now if anyone was capable of putting into words how
    miserable the pain can be.

  10. #10
    i just say

    its like super fucking bad sun burn and then u have sand paper or w/e rubbing it constantly..

    i dont get bad neuropathic pain but i do abit on my ass and its so uncomfortable..

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