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Thread: Dr. Young could you please explain central pain

  1. #11
    Yup ry, that's a big part of why it's SO bad. It all goes back to Wall and Melzack's gateway theory of pain. The thalamus acts as a gateway and filter for impulses flowing to the brain. With the extraordinary level of impulses, the thalamus basically just shuts down to avoid damage and let's *everything* though.

  2. #12
    David, I think there should be a sticky post at the beginning of the pain forum explaining this, in layman's terms or with explanations of words as you go, so people understand what they're fighting and why so few drugs work. I seem to see the same questions here over and over again "Is it going to get better" or "What can I take to get rid of this pain". And maybe an explanation of exactly what narcotics do and why they are mostly ineffective when it comes to battling this kind of pain. I've been dealing with this pain now for almost 7 years and after it was explained to me, it made a lot more sense why nothing works to get rid of it. Hopefully an explanation will do the same thing for a lot of people here.
    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.

  3. #13
    Quote Originally Posted by rybread
    I used to know a lot of specifics about what central pain is, but I can't remember them all. Maybe if you put a sticky post at the beginning of the pain forum explaining what causes the pain, what it generally feels like to us, and why narcotics don't seem to do anything and sometimes nothing does anything. I think that would help a lot of people out if they understood why they hurt so bad. Thanks in advance.
    rybread, I would do this in a second, if I felt that I knew what we are talking about. In my opinion, we are current in that "fog of science" or that is similar to the fog of war that occurs in the midst of battle. We don't know the shape or the nature of the enemy. However, we know enough to know that the attack is real and that we are in jeopardy.

    I have just spent 4 days in a meeting in Seoul, Korea (the Fourth Congress of the International Society of Rehabilitaion and Physical Medicine) which devoted perhaps a quarer of their meeting to neuropathic pain. This is evidence that doctors recognize that this is not only a serious problem but one that many people are working on.

    Let me think about your suggestion and see if there is something that can be posted.

    Wise.

  4. #14
    Member harpo2's Avatar
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    When is enough

    Where is the point where the game is not worth playing. When the other team is 86 - nil and they are running through all the defences you can mobilise with ease? Then the next game and the next, because all your defensive strategies you have put together have been overcome. What do I do for the next game, or do I not nominate my team in the following series?

  5. #15
    sandm,i DO hope the lido works for you,at least in the hot spots.i have honestly gotten much better results(in individualized areas)from using 'outside' or the more topical methods of pain relief,than i have from any of the many different meds i have tried.tho this central crap covers almost all my left arm and goes over the arm pit and over both shoulder blades,i have areas that i would call the worst of the worst?when these smaller areas flare it is beyond horrid.thats when i pull out the lido patches.they are worth trying.i also use them for the neuro itch i get along one shoulder blade and when a particular trigger point goes insane,i slap one on there too.i LOVE my lido.believe me,you will start finding other uses for them too once you see how they work for you.

    when something hits the fan,that is usually the first thing i go for since my breakthru meds wont touch most of my worst crap.they are always worth a shot.good luck with them and i hope they can help at least some of your more painful areas.

    one huge thing i would suggest tho only because i learned this over time,is to before you even peel off the backing of them,take a scissors and kind of round off the edges on all corners to remove the corners?this helps alot from keeping them from rolling when one of the stupid corners catches on your clothes.it does help alot.please let us know how they go.Marcia

  6. #16
    Sandin,

    Your question is the main one for many of us. Unfortunately, we must face this question every day and sometimes several times per day. I suppose at times when we are past the edge, we remember that we have felt this way before, but went on, and so we assume that there will be positive times in the near future when we do not feel so bad.

    I personally, and no one has the right to tell another how to face terrible pain, believe that the NIH recommendation remains the best; which is, to avoid stress. That can cover a lot of ground. It means not working, not exhausting ourself over relationships that just cannot work, and avoiding people who make us feel bad. Sometimes those people are certain doctors who have no grasp of what central pain is.

    My own perspective has been to try to be a pain activist. I think the public must know about central pain before doctors will participate. How does one gain publicity. It is not easy. I do not believe any one doctor has a magic cure for central pain.

    You can take medicines (I like the cheap ones like Elavil, or you can expensive ones like the opiates-more power to you if any of them help. I can sedate myself just as well with elavil or klonopin and opiates make me nauseated) to sedate you a little. That is all most of us get for pain relief. But the mainstay, the absolute essential is to relieve stress.

    Get in as few games as possible. A survivalist out in some desperate isolation can eat disgusting food and survive. A Central Pain subject can eat disgusting social isolation to avoid stress.

    Someone will come to rescue us WHEN and IF we quti imagining the medical profession will come up with a cure. They will not. NOTHING worth mentioning has come out for decades from M.D.'s The only material that promises relief is from PhD's.

    Ph'D's in pain operate on grants from the govt or private industry. We have to start at the grass roots and get MONEY to researchers, and they will cure us. Have no doubt of this. However, it will take a commitment from govt. I don't call six PhD's at NIDCR a commitment. I call it shameful neglect, America's Auschwitz--the world's Auschwitz, not enough to feed a desperate need. If the US sent six soldiers to Darfur to stop rape, starvation and death, would that be a commitment. I believe severe continual pain ranks right along with these other inhuman tragedies.

    Help must take into consideration the magnitude of the injury. Tragic as events in Africa are, there is something of the terrors of the dark continent in the lives of every person with central pain. Here too we see scattered families, huddled people in fear, and no hope. We are spread out, but we are a scattered nation of sufferers. Bono and George Clooney are not coming to rescue us. We will have to do it ourselves, from our beds of illness. We must plead our cause with no emaciation, no protruding ribs, and no raging fevers. Others will have to take our word for the wracking pain which takes us apart continually. Someone would have to be REALLY charitable minded to even pay us any attention, because our illness is INVISIBLE. Wise is one such minded individual and he is very important to us.

    If we do anything, we are going to have to raise Cain everywhere we go. We cannot let the public off easy. They are ignoring us.

    I don't know when is enough, but we haven't even made a start in getting public support, because we are so doggone sick. Pain is VERY disabling.

    Wise and David do us a great service, better than they know. Wise is charismatic and to be honest, I hope he can gain enough publicity that someone in the media will make his face familiar. That would do wonders for getting mroe research money. One WISE is worth more than a thousand posers in pain clinics sendind us down blind alleys. They are going to have to admit they dont' have anything. THEN, they will at least get us some decent counseling. How about some rehab including deep tendon pressure, and helpful living conditions. How about family therapy?

    I am not going to tell you to be strong. Severe CP crushes all of us with its weight. That would be ridiculous. I will say that for me, avoiding stress is the only thing I can count on. I am eating disgusting living conditions, but I am alive.
    Last edited by dejerine; 06-16-2007 at 02:06 PM.

  7. #17
    Banned adi chicago's Avatar
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    i am not a doctor ...just a vet assistent[my highly medicine degree],i asked many docs ...about neuropathic pain...their answer...the pain is in your brain only...hmmmmmmmm////////.
    • Dum spiro, spero.
      • Translation: "As long as I breathe, I hope."

  8. #18
    Quote Originally Posted by adi chicago
    i am not a doctor ...just a vet assistent[my highly medicine degree],i asked many docs ...about neuropathic pain...their answer...the pain is in your brain only...hmmmmmmmm////////.
    adi,
    If you've been around a dog with neuropathic pain you would realize it's not in their heads either. They don't try to chew off their feet and legs and penis due to THINKING they are in pain. They are going crazy with the pain. Vets know this..human docs sometimes don't.
    Life isn't about getting thru the storm but learning to dance in the rain.

  9. #19
    Banned adi chicago's Avatar
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    Quote Originally Posted by Lindox
    adi,
    If you've been around a dog with neuropathic pain you would realize it's not in their heads either. They don't try to chew off their feet and legs and penis due to THINKING they are in pain. They are going crazy with the pain. Vets know this..human docs sometimes don't.
    i agree
    • Dum spiro, spero.
      • Translation: "As long as I breathe, I hope."

  10. #20
    Senior Member alan's Avatar
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    I'm existing, but I admit during the sleepless nights that I often wish to die and end this torture. I got two life sentences - central pain and quadriplegia - in one unlucky second when I hi the Undientified Floating Object, and I know I'm not alone in this prison. Unfortunately, that knowledge doesn't make the pains any less intense.
    Alan

    Proofread carefully to see if you any words out.

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