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Thread: Neuropathic pain....what is it?

  1. #11
    No problem Cass. Just to make it more confusing, 10 years ago the content now on my .org site had it's origins at the .com address. About the time I took things over, the .com address got tied up in a mess where no one could transfer or move it because of some stubborn headaches caused by Network Solutions and an old, merged/obsolete ISP address listed on the contacts for the WHOIS for the address. I kept the site alive by purchasing the .org address, then a couple years ago someone finally freed the .com address and put it to work. There's a lot of good content there, too. Hmmm, I think I'm just confusing things more by trying to explain it, lol.

    DDJ, I'm a poor one to try to explain exactly why he's sweating, but yes I can picture this and I would guess it's related. Short, layman's explanation is that it's related to a confused nervous system.

  2. #12
    Senior Member alan's Avatar
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    My sort-of pain diary (whinefest) is at the painonline.com site. "Reality CP," they call it.
    Alan

    Proofread carefully to see if you any words out.

  3. #13
    just an FYI,to sweat or not to sweat is usually related to the sympathetic nervous system,and also possibly,with certain syndromes brought on by SCI,the spinothalamic tract.I have a damaged SNS and believe me,I have definite areas where I just don't sweat at all and others where I really make up for that by "over sweating"?I am talking waking up in the middle of the night just totally completely saturated/swimming in it but only on the L side,as my R side from the chest on down,i just don't,at all due to the SNS and also a damaged spinothalamic tract that caused brown sequard syndrome.so i kind of have a combo of crap on that side.

    also due to the SNS damage,I developed horners syndrome which among other things has made me lose the ability to sweat but only on one side of my face.

    but there seems to be that definite " compensation" thing going on in the parts that still DO sweat that keeps it on overload.I have to sleep on a stack of towels that I can remove one by one when I have to get up in the middle of the night for the potty runs.also a stack of fresh jammies really comes in handy too.it really all just sucks actually.

    But David really summed it up best with the "confused nervous system".the one big thing i found out once my spinal cord was damaged is that just about anything and everything is possible neuro wise,once the damage has been done.it is one big adventure of constant fluctuating neuro wierdness.no two days for me anyways,are ever the same.

    Just exactly how was your sons spinal cord damaged and what specific areas were actually damaged,this could help shed some light on why this may be occuring.marcia

  4. #14
    DDJ, I was just thinking of some emails I exchanged several years ago with a woman working on a her masters in PT who was doing a thesis on using PT to treat central pain caused by stroke. Different cause, but the pain is pretty much the same thing, damage to sensory nerves in the CNS. She was from Belgium and I never got a copy of the thesis, but of course I wouldn't have been able to read it anyway. It would have been interesting to look over. I might still have the emails around somewhere on a backup tape or something if I really dug, but I'm confident her address wouldn't still be valid, I believe it was from her university.

  5. #15
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    Hi
    Just by 2 bobs worth. I am a c5/6 incomplete 12yrs post.Up until a couple of years ago I suffered from shocking nerve pain (what it is called here in oz)mainly on my butt, back of thighs and my lower back, all area's that were in constant contact with my chair.My spinal Dr finally put me on neurontin and I now call it my wonder drug, it has not taken the pain away completely but I would have to say that it is 80% better and has made life a lot easier for me.
    In regards to the sweating, I can still sweat in the heat etc,but for about 2yrs after my accident when I way lying down I would sweat like anything, drench my pillows everynight,bed linen etc, as soon as I stopped taking baclofen it stopped within 2 or 3 weeks, so not sure if that was the cause, but stopping that for your son probably isn't an option as he sounds like he needs it for his spasms.I do know that there is a medication that you can take to help with severe sweats but not sure if it would interact with any of the meds that he is currently taking.
    SCI's are a strange thing, no two people are the same, what may work for one won't always work for the other, it's usually just trial and error.
    Oh and just another thing my nerve pain is always without a doubt worse in summer.
    I hope that your son finds some releif soon.
    W4Me

  6. #16
    one big question that I would just LOVE to know the answer to is,why people tend(at least with me anyways and some others I have spoken to ) to sweat lke little pigs when sleeping,even for a short nap,but don't sweat like that while we are awake?does anyone else suffer with their sweating in just this way only besides me and it appears W4Me?I never sweat during the day(unless its hotter than a bitch outside)like the way I do while sleeping.marcia

  7. #17
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    Yeah Marcia like you I only used to sweat whilst in bed never when I was up and in my chair, except on a stinking hot day of course.Who knows why would be interesting to see what others think would be the cause of it mainly only happening when in bed though.
    Just remembered something else, from memory mine was worse in winter when I was in bed not so bad in summer...Strange

  8. #18
    Hi,
    Someone said they were expecting people to chime in...
    so here goes.

    I had pretty bad peripheral neuropathy pain in my thigh. It was like a third degree burn. Not all the time, but a lot.

    All the time it was too painful to sleep on a regular mattress and I kept getting air mattresses. (they leak after awhile)

    The peripheral neuropathy was from low B12 that went undiagnosed and untreated for too long.

    Then I got tetanus because I didn't feel a broken bit of needle in my toe.

    Tetanus is a central nervous system disease. I had thought, before I had it, that all it did was lock the jaw and then people wasted away from not being able to eat.

    What it really does is lock all the muscles. It gives extremely painful muscle seizures ...

    Okay, so when it would tighten the muscles in my thigh it was just screaming bad pain. It was like molten glass shards being shot into my thigh and they felt like they cut/burned their way in.

    Well, luckily the one doctor that I'd seen (a year or so earlier) had given me a massive prescription for cyanocobalamin, which is injectable B12. So I began giving myself a lot of extra shots.

    I was taking MAX Ibuprofen, and it really didn't deaden the pain much at all when the thigh thing happened.

    Okay, so after a week or so it did seem that the pain was a little less frequent. (it wasn't ever constant, it was always intermittent, the really awful sharp pain). Then it seemed like it was really a lot less.

    When I finally got to go to a doctor (I was poor at the time and none of them would see me because I didn't have the amount of money they wanted) he gave me a three weeks long dose of Metronidazol in about the highest dose available.

    So that helped with the tetanus and with the blood infection that seemed to be causing these thin lines under my fingernails. But, I began having a lot of trouble with my feet going totally numb and I'd feel like I was falling.

    So the doctor prescribed a shot a day... (which is about what I'd been having when the thigh pain had been so bad.)

    Well, the peripheral neuropathy went nearly completely away.

    I sleep on a foam mattress now, which is way better because it doesn't ever lose air in the middle of the night.

    There has been some burning pain recently, but there's also been some major stress recently.

    Soooo, I believe that low B12 is related to perhipheral neuropathy. And, since B12 isn't dangerous, it's easy to try to see if it helps.

    only you have to be sure to look for the Methylcobalamin kind, in sublingual form. It works much better than the more common cyanocobalamin. (cyanocobalamin is fine for shots, not sublinguals)

    If you take 1,000 mcg a day, that is about equal to one B12 shot a month.

    I think it's better to take a 5mg sublingual (which is five times as strong) because otherwise it doesn't seem to make any difference.

    I went to the subinguals because I was sooooooo tired of shots. But I got much worse again, so then I realized that a shot a day was a lot lot more B12 than a single B12 sublingual.

    I did a web site about B12 because I was so shocked that I could get brain damage and nerve damage from being low on a vitamin.
    Last edited by Methylcobalamin1@msn.com; 08-14-2006 at 01:02 AM.
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  9. #19
    Methyl,

    What is the cause of your low B12?
    Last edited by dejerine; 08-14-2006 at 04:58 AM.

  10. #20
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    Quote Originally Posted by Methylcobalamin1@msn.com
    Soooo, I believe that low B12 is related to perhipheral neuropathy. And, since B12 isn't dangerous, it's easy to try to see if it helps.

    only you have to be sure to look for the Methylcobalamin kind, in sublingual form. It works much better than the more common cyanocobalamin. (cyanocobalamin is fine for shots, not sublinguals)

    If you take 1,000 mcg a day, that is about equal to one B12 shot a month.

    I think it's better to take a 5mg sublingual (which is five times as strong) because otherwise it doesn't seem to make any difference.

    I went to the subinguals because I was sooooooo tired of shots. But I got much worse again, so then I realized that a shot a day was a lot lot more B12 than a single B12 sublingual.

    I did a web site about B12 because I was so shocked that I could get brain damage and nerve damage from being low on a vitamin.
    To much B12 harms your liver. As for one B12 shot a month? Whats up?

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