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Thread: Years of onset for central pain

  1. #1
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    Years of onset for central pain

    In reading some of the posts from other threads, it seems that Central pain really starts immediately after injury in some people and then as SCI55 just posted his waited 57 years. I am curious if anyone has any research on this or if Bill, Arndog, or any of the other guys that have really great information know of the reason for this?

    Mine has always been a strip up the inside of my leg from toe all the way above my knee but 15 years post it started worsening until now it is midway between my knees and hips that burn/raw/brillo pad n alcohol/ice/cold/etc.

    Nerve degeneration was the term used at my last doctor's appointment.

    I can lay in bed with a comforter and feel the generations of a ceiling fan above. That was one of the things that made life unbearable last year but it took a long time to figure it out. How does one keep your legs warm when you can't stand the covers to touch them at times.

    I have learned that terminology is the key to most of the communication break down.
    T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

    My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

  2. #2
    I have no clue why it it hits some people right after injury and others years later or in your case worsens out of the blue 15 years later. I guess I can be thankful for the good moments which there still are, maybe not good days, but what is so sacred about breaking things into 24 hours? How about 3 hour intervals.

    Sorry Daisy, maybe someone else like Dejerine will know or the SCI nurse or Dave Berg knows the answer to your question.

  3. #3
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    Quote Originally Posted by darkeyed_daisy View Post
    How does one keep your legs warm when you can't stand the covers to touch them at times.
    I've seen these things to use in bed, that hold up the covers up away from your body for those with allodynia.
    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

  4. #4
    I haven't a clue. My pain doc and my neuro both said that it is progressive and will get worse but to no shedule or timeframe.

    I'm in such a bad run right now I can't function, the pain/spasticity/spasms are frightening.

    i can only wish you courage and peace.

    ket
    Kindly,

    The Ketamine Kitty

    All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

    Next time I die make sure I'm gone,
    don't leave 'em nothing to work on JT

    And I ain't nothin but a dream JM

  5. #5
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    Quote Originally Posted by bollefen View Post
    I haven't a clue. My pain doc and my neuro both said that it is progressive and will get worse but to no shedule or timeframe.

    I'm in such a bad run right now I can't function, the pain/spasticity/spasms are frightening.

    i can only wish you courage and peace.

    ket
    That is what the physiatrist said too. I don't have the spasms but the burning and searing is enough. The last couple of days have been no function days. Its hot/humid/stormy.

    I see the pain doc on Wednesday so I will ask as
    T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

    My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

  6. #6
    Good luck with that. I don't think they have the answers. My pain doctor has had back surgery, has the neuro pain, and he does'nt have a clue. He was able to tell me mine is progressive, chronic, and severe. That was really good news! I went hoping to hear he would be able to stop the pain.....give me a quality of life back! Instead I was told they would do their best to make me as comfortable as they could. It was a nice thought! lol I suppose I do better than I did without them, but the meds don't really help....you're just a bit drugged up. But, it's gotten so bad, I'll take it! For years I dealt with it with just the gabapentin.....that does'nt work by itself anymore, and frankly, the pain is severe enough that I never feel drugged up. I just know that morphine isn't curing anything.

    When mine started DD, it was just my feet. Then there was sensitivity with my legs and hands, then they started burning too. Then my toosh joined in, and it has been going higher on my legs.....up to and including my knees now. When the pain gets bad...like on the stormy days, that's when the spasticity gets worse for me. I'll lift my leg to take a step and it starts shaking like crazy mid step. (my grandson thinks it looks cool!) I hope these people are able to help you. I've oftened wondered if I would have been better off if I had found the pain clinic sooner. I'll be thinking of you.

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