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So confused...shingles rash

Posted , 5 users are following.

Jubs_UK
Jubs_UK

i am so confused. I recovered from shingles about six weeks ago. Since then I has underskin red blotches on my back....itching like mad.....that settled and now I have rages on my neck in the exact spots where the initial shingles clusters were....the rashes sometimes prickle and is sore to the touch....just as it was when I first started shingles. But this time it isn't progressing and is only on a small section of my neck. I also don't have any rash on my chest whereas initially my blisters were on my neck and chest. I honestly don't know what is happening with me. I have a theory and that is the virus is trying to activated and my immune system is fighting it so it's like a ongoing battle....the rashes go then they come back...it gets better than worse again.....the fear that I'm in is terrible and is causing me anxiety....I do not want to live with never ending mild shingles.....that said I don't want a full fledged outbreak either.

what do you guys think....has this happened to any of you and if so is there a way I can stop if forever? Life is miserable with this.....I'm always itching and washing my hands are all chapped.....forgive me for moaning......I'm just recovering from PHN and am worried it will get worse again.....it is the worst pain I have ever felt in all my life. I've had surgeries and given birth twice but this is torture (PHN)

1 like, 9 replies

9 Replies

  • Amy_in_agony
    Amy_in_agony Jubs_UK

    Posted

    So sorry to hear this torture the shingles virus is putting you through. I get the PHN quite often but doesn't seem as severe as what you are describing. But it is very definite and exactly the same spots and areas of previous outbreaks. I do understand the feeling of a battle going on. Unfortunately I have type I and II Herpes simplex as well so many times I just feel like a virus circus. eesh. Pay attention to the dietary elements of limiting Arginine rich foods - for me nuts of any kind and chocolate are triggers. Also skin abrasions or clothes that bind seems to cause flare-ups. The anti-viral meds really kick in fast when I start a 5 day regimen. Be gentle to your hand washing habits... from what I read I don't think that it spreads that way... 

    I feel you pain and hope any of the info you get from this forum will help. Read through everyone's experiences so that at least you can understand and take comfort from other's symptom profiles and methods of dealing with it all.

     

    • Jubs_UK
      Jubs_UK Amy_in_agony

      Posted

      Hello Amy

      guess what a while back when I had the full fledged I actually read the longest discussion ever.....190 messages in one discussion. I be learnt a lot from there and also the mallet discussions I've had with people like yourselves. We can learn a lot from each other smile 

      i take lysine 500mg whenever I get scared lol seriously when I fear shingles I take a tab but I should be more consistent to get. A long term effect. I will also start the antihistamines again. 

      Thanks about out the hand wash tip....I was getting a bit crazy with it.

      how do people stay sane with PHN.....my overall PHN has reduced thank God....now I take one amithriptyline whereas two wasn't enough for me...sometimes I even forget to take it. 

      All the best...keep in touch please

  • linda65569
    linda65569 Jubs_UK

    Posted

    I can only offer sympathy. This is now month 6 of grief for me. The "ongoing battle" is an accurate description of what is happening for me too. I will use it at my next DR appointment. Stress makes my tingling, itch, rash, headache, & nerve pain worse. Even tho it is not good for my skin, I found an extremely hot shower will deaden the itch temporarily. Western medicine refuses to diagnose my Shingles because they are not classic this time. With an autoimmune disease I've read they may not be. Honestly I almost wish for a full-fledged outbreak so somebody would believe me and prescribe antivirals. Thanks for sharing and I hope you get some relief!
    • Jubs_UK
      Jubs_UK linda65569

      Posted

      Linda thanks so much for sharing that...strangely I do the same...I get comfort from pouring hot water on my neck and shoulders....I thought it would hurt but it feels good. 

      Totally its it's a battle and we need victory but it's like one round to me then one round to shingles...the moment I stress or have a sleepless night

      or a bit of upset from family probs the stinging starts.....I find most relief

      the days after I see my psychologist....it lightens my load and I feel like, I

      have a clean heart...u know for a while things feel less burdensome....the

      more the shingles battles with us we have more movements of

      weakness....anyone who doesn't is a superhero. 

      It is so sad that u have to suffer a full outbreak for ur doc to listen and take action....why don't they go away ask colleagues and do a bit of research then come back and help us. 

      Mention  Lisa and what her doc has done see if that helps. My doc is good he will listen and look at my rash and then de ice if he thinks I need the same or just more antihistamine....I don't mind taking them but how long for? I'll start today.

      i use black seed oil and it started to dry up the rash...it didn't have fluid in the first place but u know how when spots dry they flake off and fall...I'm waiting for that,...

      on on the larger part of my chest area nothing has come back and I have used castor and coconut oil and that really relieved the PHN there. Now the PHN is only on neck and that crease between neck and shoulder.

      keep me posted on how you are. X

       

    • linda65569
      linda65569 Jubs_UK

      Posted

      Thanks for the support and for sharing your experience. I saw the Derm doc today, the only one who even begins to listen. I have Reynauds and possibly Sjogrens. She says the rash may be connected to the Sjogrens, so she wants the lip biopsy done. I've struggled with this pain and rash for nearly 6 months, and there's no way I am up to a painful salivary gland biopsy now! Besides the RX for Sjogrens is scary! No way I want to take that. She said if I ever get any blisters to come in ASAP. She gave me a sample & an RX for Atrapro Antipruritic Hydrogel which is new and rumored to be good but expensive. (I'll let you know) She suggested turning on the humidifier now that the furnace is on, and using Cereve' Moisturizer on a damp body for dryness. I will also try Allegra e/o day and hope for improvement of the rash even tho it dries out my eyes. The scalp itch is PHN, plain and simple! Of course she refused to confirm that as she never diagnosed Shingles in the first place. I feel like such a whiner when folks have much worse diseases. Still this is miserable. I will keep you in my prayers and pass along anything new that I learn. 
  • lisa1510
    lisa1510 Jubs_UK

    Posted

    Hi jubs,

    Sorry to hear you are suffering and yes thats how i felt when i first started suffering from shingles, over the years there is a definate pattern which follows a shingles outbreak.  I found that after a particular bad outbreak many weeks later, a second painful rash appeared but the spots were different,  after visiting my GP he said that it was urticaria, which has a very sharp stinging feeling and red spots,aparently its how your body reacts after shingles releasing histamine. I was prescribed piriton and steroid tabs.  For the last 2 months I have been taking a lower dose of antinviral. Aciclovir 400mg twice daily as a shingles suppresent.Im hoping that this somehow will break the vicious cycle.Touch wood no shingles so far.  You could perhaps ask your doctor about trying this.  Also for PHN you could try a tens machine, if you can bear to place pads on area.  I find this quite good relief once you get used to the machine.Hope this somehow helps, keep going back to GP, hope you soon start to feel better.  Lisa

    • Jubs_UK
      Jubs_UK lisa1510

      Posted

      Lisa thank you so much that is so incredibly useful information. We spoke a while ago in my first discussion smile. Your doctor seems very knowledgeable and that makes perfect sense. My Doc isn't a specialist in shingles but he is very good...he listens and if I tell him I learnt something from one of you on the forum he always considers it and checks it out then gives me his opinion. It's awful when ur doc dismisses you and doesn't care to work out or figure out things with you.

      actually I took ceritrizine for two weeks after the shingles outbreak and a similar rash on the back below shoulders faded away so I thought I'd stop and now a week later it's come back on the neck....so it may well be the histamine.....so how do we flush it out of our system for good...it's seems that once I stop the antihistamine tabs rashes come back in a week.

      im seeing my doc on Thursday so I'll discuss ur case with him and see if he thinks I'm in the same boat.

      God bless everyone with peace and comfort who is on this forum! 

  • linda65569
    linda65569 Jubs_UK

    Posted

    Update...yet again my western GP refused to acknowledge I had Shingles. He didn't bring up "poison ivy" thank God, and he totally ignored my pleas regarding PHN. He wants to treat the rash with a combo of Allegra, Zyrtec, & Singular. Imagine how drying that will be for my already dehydrated Sjögren's body! At least he ordered blood work, so it's possible to get answers or at least R/O thyroid disease. In a small town it's challenging to try to change doctors. I'm doing my own research now & serious rehydrating may be the answer to the rash. Guess I will have to wait for Mother Nature to cure the PHN.
    • Jubs_UK
      Jubs_UK linda65569

      Posted

      Linda

      where exactly do you live. I don't mean full address lol like which town or area. Please see the messages above...see if any of those oils can help u. I recently got helychrism oil at 5% dilute and am trying it for nerve regeneration. Look into these days things. I take vitamins as well. I'll do anything to feel better.....we all would. 

      Jubs 

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