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Thread: Central Pain

  1. #1

    Central Pain

    Hello. Some of you are probably like me. You have spinal cord injury but you also have the burning pain or the gut or bladder fulness that is called central pain. This area of SCI is not getting enough research. I am gathering stories of people with SCI who also have central pain. Most of us feel the Central Pain is worse than the paralysis, and more disabling. It is doubtful most nurses understand central pain so they look down on any who seek pain relief. If you have central pain with your SCI would you please email your story to me at nihbay@yahoo.com I am gathering stories to send to Sen. Harkin of Iowa who chairs the Sensate subcommittee which holds the purse strings on pain research. We want to get as many stories as possible about central pain so we can get this stopped while they work out our motor and coordination problems. They spent two billion dollars to send John Glenn into orbit. Now it is time to stop these two billion dollar boondoggles (quoting a former NASA expert) and start applying our funds to human needs. You better believe if John Glenn had SCI he wouldn't stand for wasting money like that. It is sinful to let people lie in agony with Central Pain and paralysis while people joyride in space. Glenn was honest enough to admit he had no idea why they wante dhim to go. He is a hero for saying that more than for going.

    dejerine

  2. #2
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    Central pain

    I went on a tour of The Miami Project while on vacation in Florida (July 2000) and at the time Anne Armadore was conducting a study on why some spinal injured have excessive pain and others do not.

    Unfortunately I was not able to participate in the study, since I was already returning home (I am one who has no pain). Maybe you can place a call to her, find out what her study has concluded and let us know.
    Hope this helps!

  3. #3
    Senior Member alan's Avatar
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    These days, my pains are so intense, I can barely get out of bed, let alone leave home to do anything (including see doctors.) I've e-mailed you the information I typed up to show to doctors in the past. Hope it helps.

  4. #4
    Senior Member craig's Avatar
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    central pain

    How long have all you been injured ? I'm going on 22 years and had no problem with burning untill a few years ago.

    I'm an incomplete quad and one side burns like crazy now.

    i'm 46

  5. #5
    Senior Member alan's Avatar
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    Injured 20.5 years, pains all over body started a month after injury and have continued to intensify over time.

  6. #6
    Junior Member donbready's Avatar
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    Chronic pain from SCI, I have tried just about everything.

    I received my injury from falling out of a tree little under four years ago. I have taken morphine, have had five nerve root blocks, currently taking neuronton, tramadol, baclofen, sertraline, cisapride, simvastatin, amtriptilene, plus an antibotic. My unrine stinks all the time and the only thing that seems to help is for me to be still and recline in my chair. As long im not moving for long periods of time I feel some what comfortable. Part of my main problem is that I dont eat right cause I live alone. So I just eat enough to stay alive. Taking care of my self in the bathroom takes up to three hours or more. The VA tells me that I have to have three contractor to summit a bid on building an addition on to my house but I cant seem to find anyone that wants to take on the job. Contractors like to have some money up front, the VA wont give any up front until the job has been aproved. After submitting three different contracts
    or bids on the addition to the house. I am really one of the lucky ones that is covered by the VA, just that good ole red tape can be more of a pain than my physical pain.

  7. #7
    Junior Member donbready's Avatar
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    Chronic pain from SCI, I have tried just about everything.

    I received my injury from falling out of a tree little under four years ago. I have taken morphine, have had five nerve root blocks, currently taking neuronton, tramadol, baclofen, sertraline, cisapride, simvastatin, amtriptilene, plus an antibotic. My unrine stinks all the time and the only thing that seems to help is for me to be still and recline in my chair. As long im not moving for long periods of time I feel some what comfortable. Part of my main problem is that I dont eat right cause I live alone. So I just eat enough to stay alive. Taking care of my self in the bathroom takes up to three hours or more. The VA tells me that I have to have three contractor to summit a bid on building an addition on to my house but I cant seem to find anyone that wants to take on the job. Contractors like to have some money up front, the VA wont give any up front until the job has been aproved. After submitting three different contracts
    or bids on the addition to the house. I am really one of the lucky ones that is covered by the VA, just that good ole red tape can be more of a pain than my physical pain. donbready2@cox.net[img]null[/img]

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    Senior Member alan's Avatar
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    Nothing helps my pains any more. In the beginning, and for a long time, I felt a bit better laying down. That hasn't been the case for a couple years now.

    My diet stinks because I always feel full and queasy, so I can't eat much, As time has gone on, I eat less and less. My activities keep decreasing as the pains keep increasing. This is no way to live. I don't think even the worst people deserves this kind of permanent torture.

  9. #9
    Super Moderator Sue Pendleton's Avatar
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    Don, you might want to talk to your doc about the Cisapride. The FDA put a restricted use tag on it about 2 years ago. It can cause heart problems so if there is another drug that will work as well many docs are prescribing new stuff. Just FYI.

  10. #10
    Member JdlH's Avatar
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    pain

    [
    On the pain subject. It can be terrible from time to time. Sometimes it's good to be alone in my car just to scream the pain away. Always when I change position, from chair to car or back, from lying down to sit-up etc. Even the elastic waist band of my underwear seems hurting me. Only when I'm very busy I don't notice it but that's just between the ears. Medication, no, I don't take any, drive a lot and have to be on top of things. I always describe my pain as the little kids thing; holding anothers person arm, then twist your hands both in the opposite direction, here we called that "barbwire" and only the big kids were doing this to the little ones. Well, that feeling but just a 1000x worse.

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