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Thread: Present Pain Research

  1. #1
    Senior Member mike's Avatar
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    Present Pain Research

    I have read about much research into cures for paralysis, primarily stem cell transplants, and different methods of treating pain, through anti depressants, or anticonvulsants. What I don't understand or have not read is research regarding why central pain continues to increase over time. What is the mechanism that causes this. I had an injury over five years ago and have had numerous MRI's which showed no difference in the cord at the site of the injury, yet the pain continues to worsen. My concern is there is something going on that is causing this and the longer it goes on the less reversable it will be if it is ever is to be reversable. Perhaps Dr Wise or others know of some specific research that has made some progress in this area.
    mike

  2. #2
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    Red face Worsening Pain

    I have the same concern. I have horrendous pain. Now, I have heard that many of us have no pain... or they simply do not let it bother them. I take offence to this... because I guarantee that they do NOT have the same level of pain as I do. And I feel many doctors think the same way. Unfortunately, they don’t know the pain we feel therefor they struggle to treat it with any accuracy. Its similar to the notion that... a doctor can treat a headache cause he’s had one. A doctor can treat pain for a sprained ankle cause he’s had one most likely and can dish out an appropriate pain, etc, etc. But, how the heck do you treat an injury that is a "SNOWFLAKE" injury. MY PAIN IS WORSENING, A FREIND OF MINE WHO IS 5 YEARS OUT, HAS GONE FROM TOURING AROUND VENEZUALIA, to totally checking out from life because his pain has gone from almost none to what I call the "Pins and Needles from Hell". That is why I feel it is risky for some of the iconic figureheads that went on talk shows and say.. when asked... "no... no pain at all". I then heard the interviewer say... well at least that’s one good thing... SCI'S are not painful. I ALMOST FELL OFF MJY CHAIR... this interview from a year or so ago still haunts me today! Somehow we have to address the specific nature of the pain that goes along with 80% of us... 80% percent of spinal Cord injuries wind up with pain... 40% of those... wind up with the unbearable... Pins and Needles from Hell. Somehow this must be addressed., researched and FUNDED. More funding has to be funneled to SCI pain. Lastly, I am trying personally to be vary careful of throwing a blanket over SCI's and our individual own story. It can set us all back if we are not careful.
    Mike (Florida)

    Cant we get 1 do over?

  3. #3
    Senior Member alan's Avatar
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    They keep telling me nothing is changing in my neck, but the pains just keep getting worse anyway. It's getting harder and harder just to sleep, because of the sensations of broken shoulder blades and vertebrae, abdominal cramping, and of course all the burning everywhere. My lousy sitting posture probably isn't helping matters. The only reason I even get out of bed is because it's too damn boring to stay in (my computer is in the other room), and I still like going outdoors. I'm miserable sitting, and miserable laying down - basically, life sucks.
    Last edited by alan; 07-27-2005 at 09:15 PM.
    Alan

    Proofread carefully to see if you any words out.

  4. #4
    I can't recall any studies on why CPS can get worse, but I'd guess there are several possibilities. If you can wade through a couple of articles on PainOnline you can find several possibilities why the might get worse. Read http://www.painonline.org/NerveCells.htm and http://www.painonline.org/guessing.htm to see what I'm talking about. You didn't really expect a simple answer, did you? I think it's at least in part due to the nasty chain of chemical and electrical interactions having time to compound their effect. For example, the thalamus is the "gateway" for pain signals into the brain and in the face of massive, ongoing pain input it has to shut down to protect itself. Perhaps this happens in stages over time. There are several other possible factors in the articles. I think any of these possibilities would be worthy of further study.

  5. #5
    mike, lindox

    I really enjoyed you guy's posts. The attitude that I have pain too but I don't let it bother me is not just a myth, it is dangerous to people with pain. I don't know many famous people with nerve injury pain, but I did know one. He believed all that garbage the doctors threw at him (excessive faith in docs), ie you have to not think about pain, not admit it, and he went insane. He was famous and you could easily find him on the internet, famous author and govt figure, but his family is still around and I don't want them to be embarassed. The thing is his pain was driving him insane but he thought he had to deny it. He had beaten cancer and become a spokesperson and got a lot of praise for overcoming cancer. When he got pain, then he tried to do a rerun of the cancer thing, but the pain was too powerful. He relished the reputation of a fighter. Refused to even talk about pain he was so ashamed to be out of commission. Became a total isolate. Ultimately he turned into a snarling beast before he died, and he used to be really the nicest person on earth. Pain can do bad things to people, kill their personality. We have to meet pain as it is, not how others imagine it is, or we can go insane also, in fact just the pain itself drives you nuts.

  6. #6
    Senior Member mike's Avatar
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    Present Pain Research

    David, thank you for the reference to the two articles from Painonline. The articles describe in detail what happens chemically as the pain occurs. It sounds like this understanding might ultimately lead to better treatment to calm the pain transmissions which would be of great benefit to all of us with CP. What I did not see in this article, was any information as to what causes this condition to continually get worse with some of us, or why some us with SCI get CP and some of us do not. Are examination of the spinal cord or brain tissue of lab animals with CP to see how these organs cord looks after different periods of experiencing pain? Should we expect that an effective treatment for calming the nerve transmissions will shut down the ever worsening pain cycle so that we will not have to continue increasing the dosage of medication to get the same level of relief? Currently I have to choose between higher pain levels or taking Neurontin in such dosages that my ankles swell up or I am asleep during half of the day. Pardon my frustration but I cannot see how we are even close to coming up with a solution in my lifetime.
    mike

  7. #7
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    Quote Originally Posted by alan
    They keep telling me nothing is changing in my neck, but the pains just keep getting worse anyway. It's getting harder and harder just to sleep, because of the sensations of broken shoulder blades and vertebrae, abdominal cramping, and of course all the burning everywhere. My lousy sitting posture probably isn't helping matters. The only reason I even get out of bed is because it's too damn boring to stay in (my computer is in the other room), and I still like going outdoors. I'm miserable sitting, and miserable laying down - basically, life sucks.
    Somethings never change Alan. I know what you mean. I used to get some relief laying in bed but no more. wr

  8. #8
    Mike, there is a lot of research going on right now by some very bright people. For example, Iadarola's work at the NIH on resiniferatoxin is very promising. They successfully stopped nerve pain and cancer pain in rats and dogs. The treatment took about 45 minutes and lasts forever. It stopped the pain but allowed normal touch and temperature sensation. Last year in a report they hoped to move to human trials "soon". There's other stuff in the pipeline too, so don't give up hope.

  9. #9
    Quote Originally Posted by mike bauer
    Now, I have heard that many of us have no pain... or they simply do not let it bother them. I take offence to this... because I guarantee that they do NOT have the same level of pain as I do. And I feel many doctors think the same way. Unfortunately, they don’t know the pain we feel therefor they struggle to treat it with any accuracy. Its similar to the notion that... a doctor can treat a headache cause he’s had one. A doctor can treat pain for a sprained ankle cause he’s had one most likely and can dish out an appropriate pain, etc, etc.
    Mike, i agree with what you are saying. When i ask someone with SCI what medication they take for pain and they tell me that they dont take anything because they dont let their pain bother them i want to jump out a window. There is no way in hell that you can ignore this type of unbearable pain. I agree with what you say about the doctors too. I have said that same thing to people i know, if the doctor could feel the pain i felt he would say " Holy Sh*t, lets get you the help you need for your pain." But they dont know and never will. I always say that the only way to understand our situation is to actually be in it. My pain has become worse since my accident and i dont see any improvement. Ive had every scan and x-ray under the sun and they dont see how or why it is getting worse. Ugh!

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