Shingles pain and itching HELP pls

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my shingles blisters and rashes have fallen off and skin that was left raw and open is healing BUT the pain and itching has worsened and intensified. The prickling pain and twitching feeling is so intense and irritating I've given into itching. Does anyone know of anything I can do....the other day I was awake till 5am. It felt mild wen I had the blisters but now I'm so uncomfortable. The doc give me amithriptyline and that helped with pain in my throat , ear and and head but does nothing for skin. I'm so confused...has anyone else experienced this. Please share ur recovery stories with me and if there's anything u found soothing I'd be grateful to hear from you. 

This is such a terrible illness....I think there should be (optional) vaccination for everyone from childhood....it's so bad that's why I'm thinking along these lines....losing my mind. My shingles started two weeks ago and I have completed the course of acyclovir. 

Hope we to hear from anyone who has suffered from shingles and or Post shingles pain

many thanks

jubs

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  • Posted

    The post shingles pain can last forever, though intermittent.  The only time I was sure that I truly had shingles, there was never an itch, only discomfort and it was only in one area. The other two diagnosis' were extremely itchy and all over (randomly) and was told by several docs including a dermatologist that shingles is never itchy nor random.  However this is something that is quite disputed on this forum which only leaves patients more confused.  The second time was post surgery (stress to the body) and the third time followed a session in a garden.  I will never know what they were because I was later told, while still having the rash, that it was contact dermatitis, possibly poison ivy. ( same dermatologist) for both diagnosis')

     I found that Aveno soap and lotion helped the most, even better than calamine.  I also took oatmeal baths which helped a bit but we're not pleasant.

    Good luck!  I wish that the docs can be more consistent with their opinions about shingles with pain vs itch.  Perhaps we will never know but will have to deal with the symptoms the best we can.

     

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    • Posted

      Hi Sudeco

      really appreciate your reply. God, it depressing thinking there is a chance we have to live with this kind of pain forever. I'm on amithriptyline for the pain and it's made a hug difference for my throat ear and scalp pain. But as for the skin and the open wounds that are healing it isn't doing anything. My skin itching and tingling has increased by more Han double to when I had the active shingles blisters. I know it can itch when skins is regrowing. But it feels too intense...the twitching and the prickling and the sharp pains.  Have you experienced this? How have you recovered each time from ur shingles...how long did it take for your skin to heal and did you have raw flesh when the shingles fell off? 

      Where re can I get the oat bath thing.....I'm confused is it normal oats..,,could you direct me to a brand or anything 

      I wish everyone a speedy recovery. 

       

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    • Posted

      First off, thanks to Jubs for bringing the question and thanks so much for each and every comment.

      Just like everyone else here, I had shingles bad and was miserable. The doctor gave me medicine and it appeared to go away. Then one night I had this terrible itching and it wouldn't go away.  Just like everyone else I was miserable and couldn't sleep.

      So I found this thread and others. Wow thanks. My itching is gone and I'll explain what I did and why.

      I first tried some of the rubs. Especially the coconut oil. It helped but it was just masking the itching for a short time. This was helpful...

      I considered going to the doctor and getting more medicine, but it was explained to me that it would just mask the itching. I would surely do that if it wouldn't go away but I try not to take any medicine. I tried stuff like zyrtec and it did help but the itching came back. I didn't want to take this stuff for the rest of my life.

      Then I stumbled across someone who told me to eat pears. I thought they were crazy and didn't bother.

      After stumbling around being miserable for a while. I stumbled onto someone else who explained to me that in the same way that cancer feeds off sugar the shingles virus feeds off of something called arginine, or more properly the ratio of arginine to lysine. If the arginine is too much then the virus apparently can feed and attack your nerve cells causing the itching. They also told me that shingles is similar to herpes in that way. 

      So I did some more investigation and learned that chocolate, nuts and seeds, gelatin. coconut meat(apparently not the oil), flour, etc... all have this ratio of arginine much higher than lysine.

      I had been a nut and seed fanatic. I had bought a big bag of macadamia nuts right before my itching returned and had been eating a big handful each day. I had been doing this while trying all the rubs and etc...

      Then I stopped eating nuts and learning more about foods and this arginine vs lysine balance. It took the better part of a week of eating differently and the itching started to diminish. Every day it got a little better and now I can sleep through the night and the itching is gone.

      The funny thing about it, is that I was too stupid to listen to the pear comment and after learning that pears are one of the foods that have a beneficial ratio of lysine to arginine, its no wonder that worked for someone. Just goes to show there are lots of smart people out here trying to help. Thank you.

      If you do a web search for "lysine vs arginine" you should be able to find plenty of lists of foods that can help, especially the ones which also help herpes. For me lots of yogurt, cheese, and other dairy products, along with (you guessed it) pears and other beneficial fruits and vegetables appear to be keeping me itch free.

      Its so funny after all these years, Hippocrates still has the best idea. "Let food be your medicine and medicine be your food.

      Best of luck to you all.

       

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    • Posted

      That is exactly right, Chris! I've recently learnt a lot more about shingles when, after being given a Prolia injection that I didn't want, I came down with shingles due to the lowered immunity caused by the Prolia. As a nurse, I still wasn't all that familiar with treatment for shingles... but now I am!! And yes, I discovered that high levels of Lysine in the diet are an important factor in the treatment. Of course the other factor is boosting your immunity levels. You can do this via natural means - just ask your pharmacist. Also I had to cut out nuts, seeds and chocolate - sad, but necessary! Right now my skin is REALLY hot - after all it IS in the mid-thirties (centigrade) outside - and with the shingles, it feels much hotter! And I don't have air conditioning!!! One good thing is that ice cream is high up on the Lysine list!! I hope all goes well with your recovery. It's a nasty virus, and causes a lot of problems. But, as they say, all bad things come to an end!!

      Cheers, Ann

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  • Posted

    Hi jubs,

    So sorry to read your post, yes you are right it is a terrible disease and the first time i had shingles i could not belives the stinging and pain, my first attack was on my hip and back,  after initial antivirals i then started with Gabapentin from my GP, start with a low dose and gradually build up, i took these for a couple of years along with amithriptiline.  I then started to research a bit more and now use a tens machine, once you get used to it,the machine really helps with nerve damage.  but when i got shingles on my face you cant use the machine there!!  Pharmacist recommended to use acyclovir cream (cold sore cream which in uk you can buy most places) together with antinviral tabs, the blisters heal much quicker.After spots have healed i used lidocaine numbing cream which really helped me (expensive to buy from chemist but you can get on prescription too).I find too that i feel exhausted for weeks after an attack so rest when you need it and take a liquid tonic to give a boost.  But as always when i get run down or "do too much" shingles appears again.  I have learnt to live with it and i think the pain has reduced as i manage it without any pain relief or whether ive got used to living with pain and stinging! im not sure.  But keep going back to your GP until you have the correct pain relief.  Im still trying to control my stress levels as it plays a key part in shingles but this is very difficult. I wish you well and you could try the shingles vaccine too, i had that almost a year ago, had to pay for it privately as its only available for over 70 year olds!! only had 2 attacks this year so hopefully will boost my immunity.  I hope this helps you and fingers crossed you feel better soon  

    Lisa

     

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    • Posted

      Hi lisa

      sorry to hear about ur suffering....it's just so hard! I didn't know acyclovir came as a cream. I wish I had joined this forum at the onset of my illness as people are so helpful and I've learnt a lot from the 3 replies I've got within hours of my post. The doctors don't tell you everything or even half of what they can tell you.... When I asked if theirs anything for my skin they said no (apart from chilli) now would you put shills on broken irritated skin???  

      I think you did the right thing by getting the vaccine. Would it be suitable for me as I am 34 and the vaccine is for over 50s group. 

      Do do you feel like it has made a noticeable difference and have you had any side effects? 

      I think ink it's really hard to control stress...when I get stressed I get scared I'll get shingles and that stresses me even more lol where do we go from there? I feel so sad for all of us. I guess all we can do is look after ourselves as best we can and learn from each other. 

      Really appreciate your reply.

      best wishes

      jubs

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    • Posted

      Hi jubs

      I paid for the vaccine at a private clinic cost £235 im 46 years old, there were no side effects, and found the pain after to be more bearable, so yes for me it was worth having and will definitely have it again.

      Take care

      Lisa

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    • Posted

      Hello Lisa,

      Sorry to say, I had the vaccine and it did nothing for me, maybe because I'm on Warfarin ( following a stroke) and my Immune system is very low. I agree it is stress brings on the attacks, but stress, unfortunately, is part of life. 

      Pauline

       

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    • Posted

      Hi Lisa, I sincerely hope you are fully recovered by now and enjoying your life to its fullest. I got shingles just under 2 weeks, I'm in so much pain don't know what to do with myself, how will I be able to live my life again, even now as I am trying to write this" the pain wouldn't leave me alone it's excruciating intense pain

      difficult to describe, please share your thoughts with me how are you doing now, I feel I'm so alone in this world with this awful disease, I haven't been able to seen or talk to anyone for the past 2 week other than my doctor.

      Tay

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    • Posted

      Hello Tay, you're NOT alone. We've all been through this, and maybe you like me, found this forum as you were desperately finding answers and support. There's a lot here that can help you as you'll learn tips on how to cope and suggestions to make things easier.

      I was diagnosed back in November, two weeks after my outbreak so I never got the anti-virals. I'm steadily improving, but still have pain, which can happen. Right now, you may be at the worst time for your pain, so it will get better.

      First, did you get the anti-virals within 72 hours? Where were your shingles? What other meds are you on? There are variations of treatment but generally a drug like Valtrex (an anti-viral) is given within 72 hours which helps prevent the replication of the virus. The earlier it's given, the more it will help. Gabapentin (Neurontin) is often given to deal with the pain, but must be slowly increased, so it can take a few days or longer to get relief. Other drugs such as Lyrica, which has some similarities to Gab are also often used as may some analgesics (pain-killers) including some opioids. Also ice or cool showers may help, pain cream with lidocaine, either over-the-counter or prescription, and sometimes anti-inflammatories or Tylenol can help.

      I take Gabepentin, Extra-strength Tylenol and a prescription NSAID (anti-inflammatory) I've been on for years along with Aspercreme pain cream. Keep reading, and you'll learn more.

      Remember this is a virus in your body, it may show up as a "rash" or pain in certain areas, but your whole body is being assaulted so you likely will feel exhaustion, possible nausea, headachey and other symptoms. REST, REST and MORE REST is vital. It helps your body heal, but also keeps the nerves more quiet. Right now, the pain may be so great, it's hard to tell what sets it off. My shingles were in my back and below my breast, so for me, bending, twisting, learning and lifting cause pain, so I avoided any motions. I still have to be careful, but back then, I couldn't lift a heavy glass of water, I had to use a straw. That's just one example, but you get the idea.

      You may want to start your own thread of questions or comments, to separate from this much older thread. But right now, that  may sound too difficult.

      We're here for you.

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    • Posted

      Hello I hank you so much for your kind and supportive reply, I was loosing my mind, from the bottom of my heart I wish you a full and speedy recovery. XX

      Tay

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    • Posted

      The same to you, except this dragged condition is any thing but speedy.  Sadly, you may have to measure progress by the week, not days. Sometimes I'd actually write down the progress, to remind myself.

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    • Posted

      Hello, thanks, I will take your advice on board, I was healthy and fit,i regularly went to the gym, I think I know what brought up that "thing" I often get stressed about the slightest matter, and I am feeling so alone since my divorce 7 years ago, I used and I liked that to have someone special in my life.

      I forgot to answer your questions; the shingles is on my abdomen and back, no I didn't take antiviral on time, it was about 10 days after, at first my doctor suspension was on kidney stones!!

      yes I do have other medical conditions, I suffer severely from IBS and gastro oesophagus reflux disease, I take several medications for this, the G.O.R.D disease made my life so difficult, I can only eat certain foods and in a small quantity, as well as I have to avoid eating many types of food and fruits, for example I must leave 3 hours gaps between meals and eating any fruit. Eating any types of bread or any diary food is a thing of the past ; which I used to love, I was also diagnosed with inguinal hernia Last October, I have been on liquid food diet for approximately the past 2 years, partly because reduces the flare symptoms but deep down -also- because I don't enjoy eating alone.

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    • Posted

      I can so relate. I almost died of cancer 9 years ago, have suffered from unbearable side effects from the treatments since. now shingles for 7 months...all I believe due to stress. Marriage ended during cancer, daughter on drugs...newest baby in family born severely brain damaged... those are just the highlights! I don't think it ever ends.

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    • Posted

      I'm so sorry, I feel for you and sincerely hope it gets better for you and your family. Shingle is such terrible illness, I have read few forums from other fellow suffering; who is in so much pain and despairs to the point that some of them considered suicide an option, I admit- but not proudly- it also crossed my mind. as soon as I stand for 5 minutes I get that debilitating pain across my back, flank and abdomen, I haven't been able to do any house work or any work at all for 3 weeks, I'm on Gabapentin 1500 mg a day is not helping, I don't really know where to go from here, if only my Dr diagnosed me correctly on time! I hope it gets better for all of us! Though I'm not so sure how that could happen! but only one can hope.

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    • Posted

      I have had the shingles nerve pain for 7 weeks and the actual shingles for 6. Its in the same place from my back spine around the side to under breast. Im on gabapentin and the lidocaim pads but nothing seems to help. I am having alot of swelling issues on the side t under the breast. Fells like i have a big brick in there..Anyone else experience this?

      Report Reply

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