Recurrent shingles (herpes zoster)

Posted , 5 users are following.

I have had recurrent shingles at the base of my back and on the side of my head since I was in my late twenties. I am now 52 and still get it. It took doctors years to diagnose at first treating the rash as a boil. I have been to specialists been on Valacyclovir, Acyclovir, and famvir I now have to have doses of Acyclovir if an attack occurs 800mg 5 times a day. I have been left with constant pain in my ribs joints and take paracetamol and codeine daily. I also have numbness in areas on my back and legs. I sympathise will all fellow sufferers and you have probably had friends family work colleagues tell you you can't get shingles more than once. Well I've heard it all and now suffer chronic fatigue and struggle with concentration. I really wish doctors were made more aware of the condition now and realised how debilitating it can be after suffering it for so long . It affects your life and  mental wellbeing after coming across this forum I never realised how many people suffer the same as me .

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5 Replies

  • Posted

    Julie:  sorry to hear.  Like you, I have had it long term (but only 7 years).  My sympathy.   I don't have an answer but you are not alone.

    jim

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  • Posted

    I agree that doctors tend to tell you just to put up with it, since they can't do anything about it. There are some things that help and you've noted some. I use gabapenting 600 every 3 hours and topical lidocaine (Anecream 4%). This don't solve the problem but, at least make it tolerable. I also thnk you have to keep yourself busy and do anything to distract from the pain. It is frustrating that no research into an actual casues and cure seems to be happening.
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    • Posted

      Hi thank you for your reply. I have tried Gabapentin but it did not help. I take pain killers every day . I go to work every day and have learnt to manage the virus however I am now not reacting to the anti viral treatments which is concerning. To be honest most GP's haven't got a clue about the virus and many mis-diagnose in the early stages which can cause more problems for the sufferer. I don't know if you have the same problem but trying to convince the doctors just how painful and de-bilitating it is,  is very hard. I cannot get comfortable at night and wake up with a vice like pain across my middle and back every day. I just keep taking the tablets .
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  • Posted

    Similar path I also took. Yeah, thi sillness is such an unknown disease to most people. Most of us who have it rotate our lives around the flare ups. I agree, distaractions are helpful and sometime I notice patterns and try to change them(Like a bandana on my head at night so I do not itch or touch it. I really feel for you. It is good to have other people who understand each other.
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  • Posted

    Julie,  I am a new boy and have only had PHN for five months.  Ii seems longer because it has 'defined my life' ever since it started after bad shingles.  My experience, for what it's worth, is that paracetamol and codeine don't work and ibuprofen worked at the early stages but after a month became ineffective (or maybe it was that the pain got worse). But Naproxen three times a day does give some relief and lidocaine patches do definitely help.  Since we all react differently to medicines it's worth keeping at it, persuading your GP to presceribe something different. If your GP practice has a number of GPs it's often possible to see a different one who may take a fresh view,  A trainee GP who is still keen and not disillusioned by an endless parade of the suffering and grumbling may really take an interest and be ready to try a different anti-inflammatory./  If you haven't tried Lidocaine patches then I do recommend getting them.
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