Some ideas to help with itching or touching painful areas

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I have PHN on my left ear and left side of entire scalp. I don't know if anyone shares this experience but I get flares, several times I day where the area where I had shingles begins to burn and I feel a need to touch it and when I do the pain goes to other areas where i have had the shingles. Someone gave me the idea of having a bead necklace and whenever I get the urge to touch the area I touch a bead instead. I roll it in my hand to fight the pain and I focus on a part of my body that is not painful(like the palms of my hands). I count to 4 to myself and just breathe. I have found it does help with that  insatiable need to touch the nerve pain area. Only those of us who have it would understand. Please let me know if this happens  to you. This is just an idea but it has helped a bit. It may be worth a try!

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  • Posted

    One of my recent pain specialists adovactes the current theory that the pain sensors in that area are dead/depleted and it is a learned pain that the brain signals as pain.  Not totally sure I agree with him on this but there are some indications that it might be true.  Perhaps some of the areas or in part but i don't believe in total.  Could also have a bearing on what you are saying.  I find however if I put pressure on the area it helps - of course never light touch.  We all experiment and try anything for relief.  Thanks for sharing.  jim
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  • Posted

    Yeah, I would say try anything, right? Thanks for your response.
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  • Posted

    I'm going through PHN and it is driving me mental...it's been almost three weeks since my shingles came on and I was surviving on the thought of 'it will end soon....in a few weeks' now the shingles have gone and doc confirmed its PHN I don't know what to do or how to cope. The tingling and prickling and itching feeling has intensified more than thrice what it was during the actual blistering......has anyone else experienced this? 

    I will ill try both your ideas....I'll try anything to get relief.  Mostly I want to ask how do you wear clothing....my smooth vest or dress feels like it's made from sandpaper....

    so miserable

    jubs 😭

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    • Posted

      Clothing is the biggest challenge.  I can only wear soft cottons that are snug but not tight.  Replace constantly because once they become loose the friction is torture.  Even then by the end of the day everyday the pain is intolerable and clothing has to come off.  I cannot have sheets touch me at night and can only sleep on one side.  That has not changed for 7 years.  People just dont understand how  difficult it is but I know what you are experiiencing.  I tell people it is like a bad burn and then rub it with sandpaper.  jim
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    • Posted

      Jim that is exactly how I feel. The thought of going beyond my door terrifies me. At home I just wear a vest with one strap on.....my right shoulder and neck are affected. Even wen I move and do things with my right arm it hurts. I too only sleep on now side. Life has become miserable....every chore is a great burden. I'm mostly sad for my little ones.....it's like they only have a mother to look at and talk to....my husband has to do everything else. This is like a nightmare that I don't know will end. It's too difficult a life. I might try cling film under clothing. 

      I feel disabled....like I want to do everything but can't do anything. I am far sadder with this then I was with my ankylosing spondylitis diagnosis a year ago. Everything is collapsing under me. ......

      im staying sane by coming here and sharing this with all of you and knowing I'm not alone helps me cope a little better. I have the rest of my life to live and young kids I need to be a mother to....don't know how I'll manage. 

      Man thanks jubs

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