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Thread: fucking dying tonight

  1. #21
    From what I've heard from people it's not a matter of how soft the cloth is, it's how slick and smooth it is. That's why people prefer silk to soft cotton or microfiber.

  2. #22
    dejerine .. I do have muscle pain.. some times my lower back feels locked up , stiff...better if i stretch it , those days i spend stretching all day.. rain storms , real humid weather, to hot out , winter time is a whole nother for me.. last year i ended up in bed for days week, after week ..polar vortex was hell.. got so bad was unable to get dressed.. just miserable pain... NOT looking forward to winter at all... purple feet & legs is just burning pain... I feel best at 60 to 80 , 85.. all depends on how humid it is or if it's going to or is raining..
    for clothes i wear the smoothest of shorts and have to be selective about the waist band.. can not do underwear..and have to cut the linning out of sweat pants... anything cotton just feels like a constant rug burn gone bad. anywhere around my waist is super sensitive. anywhere at any time can be super sensitive... very very challenging...

  3. #23
    Senior Member SurfCat's Avatar
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    can barely type i'm in such misery... but at least wanted to add my voice & a bit of long distance love to the others suffering this same indignity this evening. peace+hope+love
    surf
    "He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will RUN and not grow weary, they will WALK and not be faint."
    Isaiah 40:29-31

  4. #24
    I was wondering if others felt their best in the morning with this pain and as the day goes on it gets worse..?

  5. #25
    Freespin, many people report that fatigue can significantly increase their chronic neuropathic pain.

    (KLD)

  6. #26
    Freespin

    Once again, you are doing a very good job of description. All the steps you mention about clothing are very famliar to anyone with severe burning dysesthesia, which is the burning pain you describe. Those with high cervical lesions feel very isolated since there is no place on the body where they can be touched and feel human contact. The burning goes right into the mouth nose and eyes. They are in their own dimension and heaven help them.

  7. #27
    dejerine.. very humbling , I just couldn't imagine having this pain at that level.. I am a t12 , this pain is very consuming & isolating for me at my level & can't imagine having this pain complete body experience .. My deepest respect for those who have it much worse then I..

  8. #28
    Freespin did you read the links I sent you?

    I am so sorry you are in this club reach out here when you need to

    Dejerine loss of self over time. for a while my tagline was all that I am is all gone, now I have no ability to even recall what I was pre CP

  9. #29
    I never connected the burning in my mouth with my neuropain. It's not a always thing, just on my worst days. On those my whole body is on fire. And touch doesn't cause pain, but it worsens it.
    But I'm lucky, not all my days are quite as bad like that.
    There's always something magic, there's always something true. And when you really, really need it the most, that's when rock 'n roll dreams come true. Meat Loaf

  10. #30
    Senior Member alan's Avatar
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    My entire back and front feel locked up and hard, among the many other sensations. The shoulder blades and vertebrae sticking out of my back feeling is another one.
    Alan

    Proofread carefully to see if you any words out.

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