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Julie Haupt

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Julie Haupt

My name is Julie, I’m 33, and I’ve had Central Pain for 6 years. I have severe burning and cold, unrelenting pain throughout both sides of my body. The worst part is my hands. It feels like i’m on fire and also freezing cold.

I had a stroke at 26, a blood clot in my cerebellum, right in the middle of the back of my head, by my spine. Four months later the tingling in my hands started, I also had tightness in my arms. The pain changed to a burning, spread everywhere and worsened. The only place i don’t feel it very much is my lower back and buttocks.

The only thing that has helped me so far is opiates, I’ve tried every non-narcotic. I can’t be on them forever so i’m hoping to get a spinal cord stimulator or something else. Everyday is a struggle not to go crazy, I try to stay distracted with tv and search for help and solutions.

Thank you for this group. It’s nice to hear other peoples experiences and what they’ve tried. It’s nice not to be alone, although I’d never wish this on any person or animal. No one should live like this and I hope there’s a breakthrough soon. Thank you for giving me a voice and help.


2 Comments

  1. fenfool says:

    I just found this site, your story is very familiar…I had a stroke at 35, no idea what happened, they said there was a dissection of the pre-vertebral artery somehow…my pain is a little different, it;s in my entire left side and the right side of my head, I know the burning very well. I can’t feel temperature in my left, when I get too much pressure or extreme temperature there, I get a sharp, stabbing pain in my face. Rain can feel like daggers if I’m not prepared. Opiates are the only thing that help me too…I hope for a way off of them, but nothing else has helped. Thanks for sharing your story, I hope you find some relief!

    -Jim

  2. william russell says:

    Went in for day surgery on a right shoulder rotator cuff tear woke up with my brain torched.Right hemispherical stroke in 2007.Thought rehab and leaning how to walk again was huge.The tingly bee stings were one thing but the constant pain in my foot and hand on the left side is a challenge daily.Have tried several different drugs no positive results.this really does suck that almost 6 years post stroke.Iam 52 don’t want to start smoking pot just for relief.Have torn up my body due to sports and other stuff rehab is the key hope someday we can helpall of us that sufferfrom this nastydisorder great to here about others my family and others just don’t understand

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