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Thread: Is there any hope and what tools do you recommend?

  1. #1
    Senior Member
    Join Date
    Aug 2001
    Melbourne, FL USA

    Is there any hope and what tools do you recommend?

    Have read a lot of posts on here and was wondering if somebody could distill it give me some advice on what to try. Presume that I have three types of pain.

    Neuropathic pain when we first experienced it in rehab we called it burning butt, or wherever that sensation was thighs, calves, etc. This has mostly gone away except sometimes a second type of pain will trigger it when it really gets intense. However, in the last 10 days, it has basically knocked me down in the dirt.

    When I get stressed the nerves keep causing my muscles to fire and my whole lower back locks up and the only thing that will help it has been Valium. However if you don't take the Valium before Your back locks up, you never Make it recede, or break it.

    Sometimes it gets so intense and spreads down to my coccyx, back of my calves and down to my feet. Do not know how much the scoliosis, Heterotrophic Ossification, broken legs that never healed correctly, and drop foot to make sure you cannot fit into an uncomfortable chair comfortably compounding the pain.

    The second type of pain is in the middle of my back were the vertebrae in my spine are being crushed together by gravity pushing me down 35 years, and increases or compounds the scoliosis. This has forced my heart to shift to the left 1/2? and has pressed on the left lung opening, closing it. When in a Hospital bed I can't sit up (raise the head of the bed) without sliding out of bed to my left.

    The third type of pain is If during sleep somehow I get twisted (the wedge gets out of place etc.) to make my thoracic vertebrae hurt, I know when I get in the chair it is really going to hurt, and this wears me out, sucks out my energy. Have No muscles for balance or support, so gravity is my worst enemy.

  2. #2
    Not really sure I can give any advice and I know this is months old but I know how you feel. But I have found getting more active like working out stretching and anything that gets your body moving helps me get ride of a lot of pain like lower back butt legs obviously won't eliminate it but definitely helps. Also my sister is a registered dietitian and she has helped me start eating healthy we and helping me make sure I get plenty of nutrients daily and that also will help with pain and over all feeling better. Hope that helps a little if you want to message me about any of this go ahead

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