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Thread: fucking dying tonight

  1. #11
    Freespin, I think a lot of that depends on the type of neuropathic pain you have. If you have allodynia, where you experience pain from stimulus that is not normally painful (vs. hyperalgesia which is exaggerated pain to a normally painful stimulus), then wearing clothing or having a sheet rest on the body part can be extremely painful, as can having someone just lightly touch the area. My dad had allodynia from peripheral neuropathy (post-herpatic) on his trunk, and for the last 15 years of his life the only material he could tolerate against his skin for shirts was silk. Cotton, polyester, or wool were not tolerable. You might look at silk long sleeved t-shirts and turtle necks to wear in the winter under other clothing. That helped for him. I bought him silk sports shirts to wear in the summer.

    Ketamine, I hope your pain is eased. So sorry your latest treatment did not appear to work at all for you.

    (KLD)

  2. #12
    Hi Freespin, Hope it didn't seem I was indifferent. Have this in spades ...Central Pain, along with other manifestations of it you likely have but didn't mention yet. Worth searching CP on the board. I've got some decent posts as a sufferer Dejerine is the brain though, search her posts as well. It is a complicated difficult problem for some, with unrelenting pain that I indescribable and unless you've felt it unbelievable. In addition to the topical burn you mention I also seem to have bubbling acid about 1/4 of an inch below my skin. I wish you peace and some respite, try what there is to try. some get some relief from various protocols, some little if any. PM me if you need a sounding board.

    kindly,
    ket

  3. #13
    thank you both... I had a spinal syrinx that grew from T12 to T7 and had spinal cord shunting and untethering surgery.. before that i always had some neuropathic pain but never to the point where it is now.. I am almost 12 years post injury and 2 years post syrinx..
    I believe i have both types of pain Allodynia and hyperalogesia...i always have this burning pain and clothes aggravate the pain greatly depending on weather conditions along with other types of conditions..like for how long i have been sitting or how much activity i did before during or after... this pain extremely difficult to deal with or to pin point... have not found any meds yet that help much....
    I also have and unstable fusion at the moment... and am waiting surgery.. that as well i'm sure is adding to my neuropathic pain.. but i don't expect surgery to stabilize my spine will help much with neuro pain...syrinx did a lot of damage ...

    thank you both and kat just keep going and do whatever you can do..this pain is relentless ...

  4. #14
    Freespin

    Thank you so much for describing the burning, AND the lightning (lancinating) pains. This is classic central pain. Those who cannot tolerate clothing are said to be suffering SEVERE Central Pain, but of course all central pain is severe compared to normal existence. The worsening with change in the weather is also characteristic. Do you have "muscle pains"? If so, what are they like?

  5. #15
    Bollefen

    I am so sorry you are going through this constantly. Painful to read. Hope you have some strength left.

  6. #16
    SCI

    That sounds very familiar. Silk is the thing. Bare is even better. Where did you find silk. I can only find it in the women's section. Dillards used to sell a line, but that has gone to cotton blend now, with only a little silk. Still expensive though.

    I think you are honoring your father by working in this field. Who else would believe us, with no herpetic lesions to convince the eye?

  7. #17
    ket

    Decades for me. But after a while, time mushes. That other life and that other identity almost does not exist. Pain too overpowering.

  8. #18
    Quote Originally Posted by dejerine View Post
    SCI

    That sounds very familiar. Silk is the thing. Bare is even better. Where did you find silk. I can only find it in the women's section. Dillards used to sell a line, but that has gone to cotton blend now, with only a little silk. Still expensive though.
    I used to be able to get silk shirts at Robinsons-May department stores in Southern California, before they were bought out by Macy's. Sometimes I can find them at Nordstrom's. Macy's seems now to carry only (expensive) Tommy Bahama silk, but I did find some much less expensive ones on Amazon. Also check out TravelSmith.com, WinterSilk.com, LandsEnd.com, and even Kohls.com and SierraTradingPost.com. There are others you can find by doing a Goggle search.

    (KLD)

  9. #19
    I've seen men's silk shirts online, sometimes sold as an under-layer. A quick search now showed that Men's Wearhouse has something available. Not sure whether they're available in stores or only for online order.

    http://www.menswearhouse.com/webapp/...iew=&orderBy=0

    Once you click on that link you can filter the search results to show only casual shirts.

  10. #20
    Would rayon fabric be an acceptable alternative to silk? It is a little heavier, though still very light weight, but the feel of it is exceptionally soft. It is very affordable and available everywhere, even Wal-Mart and thrift stores usually have a fair selection. The drawback is it is usually in flower type prints, and button down shirts, but I have occasionally seen lounge wear/sleep wear made of it.

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