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Recurrent Shingles

Posted , 2 users are following.

faith8178BAM
faith8178BAM

I first got shingles when I was 43.  I went six weeks begging and pleading with my "physicians" to understand how much pain I was in, but because there was no rash, they assumed it was genital herpes with no rash (really after 20 years!).  It showed up on my hip six weeks later and I saw my dermatologist, who said, "Oh, that's Shingles."  I got diagnosed with genital herpes when I was 23, and it was no great shakes.  It was three to four days that hurt when I peeded. The biggest deal was having to tell potential partners, none of whom cared.  There was one person on this site who complained of "lady parts," but that's been my area the whole time and it's frustrating to think I'm the only person on the planet.  I get the lesions on both hips (the S2 dermatome) and have to deal with physicians that tell me this can't be possible, so I, too, am grateful to see a site where people have lesions on both sides, or no lesions at all, and feel the same kind of pain.  I want to know if anyone else considers suicide because of the pain, or if I'm the only one that feels it because of it's location.  I think I could deal with it anywhere else.  I'm on about my 30th outbreak in nine years but can't bear the thought of being a 70-year-old woman trying to explain to a 30-year-old doctor that I want to be amputated at the waist.  This is nightmarish.  I'm 53 now.

0 likes, 3 replies

3 Replies

  • steve_1
    steve_1 faith8178BAM

    Posted

    After my third outbreak of shingles the doctor said in hushed tones that after three the recomendation is to test for HIV. Neadless to say I nearly had a change of trousers but went along to be tested for HIV, diabetes, various cancers and loads of other nasties. I was given the all clear on all fronts, but was told that my immune system was shot and thats why it kept and still keeps recurring. 

    Yes, it can and does occure on both sides of the body although most doctors say it doesn't. Also, if it occurs on both sides and meets in the middle you WILL NOT die.

    There are a lot of old wives tales about shingles or Herpes Zoster. Again, yes, it doesn't need a rash, Herpes san Zoster, or Zoster sine Herpetic or something like that.

    Get the bloods done to see why you are susceptable to it, if your immune system is shot  you are open to all sorts of unwanted nasties and may have to take precautions. At 53 you are entering the age range for Polymialgia Rhumatica and if you think shingles and the Post Herpetic Neuralgia that follows hurts you aint' seen nothing yet.

    Steve.

    • faith8178BAM
      faith8178BAM steve_1

      Posted

      I've already been tested for HIV, which was negative.  I've seen an immunologist and had about $5000 worth of blood work, but the only unusual thing was that I have very few unchained memory B cells, whatever they are.  He said that my chained memory B cells were fine, so no problem.  Really?  No problem?  Believe me, I have spent untold amounts of time and money trying to find a solution to this problem and have accepted the fact that there just isn't one.  Thank you for the suggestion, though.  I'd rather have HIV.  At least then I could maybe die of AIDS.  My mom's already lost two kids, so there's no way I would kill myself.  I just have to take painkillers, antivirals (for all the good they do), and keep persevering.
  • steve_1
    steve_1 faith8178BAM

    Posted

    Tramadol seems to work for me, 100mg up to 4 times a day and 10mg amitriptyline at bed time, makes life bearable. It can be addictive but what the hell, it relieves suffering.

    Here in the UK we get it all free of course (we pay through our taxes) so we can afford any medical treatment thats available, and I've tried them all, and this is the best for me that won't actually kill (like heroin does).

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