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
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.
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
I had shingles 2 years ago, started with excessive itching on my shoulders. I didn't know what it was, I asked my husband to have a look, he told me I had made it bleed. Had been to the Dr previously about pain in my shoulders. He took blood tests which confirmed shingles. He told me it could return anytime in the future, as Post Herpetic Neuralgia (PHN). There is no cure. I had a Shingles vaccination (Zostavax) but the PHN has returned several times, including recently. I was given Lidocaine patched and cream for the pain. I am now suffering with Vertigo and Depression. Have been told there is a 5month wait for counselling, unless I feel suicidal. I think that's appalling as I really need help.
sorry to hear about your suffering and depression....it's crazy how they only help when ur close to suicidal....people should be helped at the onset of a problem....then they can function better and the NHS cost is much less in the long term. I have ANkylosing spondylitis as well and it took over a year to get diagnosed and now another few months have passed without being on any treatment....go back to doc and ask again for counselling...it really does help.
Shingles pain and tingling can be intense. I'm praying that the pain goes away and isn't PHN although it seems very likely. Even the parts of my skin that has healed is sore and zingy to touch....I wear a vest all day.
I think ink ill go doc in the morning and get lidocaine cream or patches.,,my husband tried to buy them but when the chemist hard it's for shingles they said we should go doc first.,,,anyways
may I ask your age? I'm 34 and I want to get the vaccine.,,,will I be allowed.,,,I'm willing to go private....I'd do anything not to feel this way. I feel like itching and scratching so much...I think I irritated the nerves by itching it....it was not this bad when I had the actual shingles blisters....it's been two weeks since the onset of shingles.
Apologies if if this message doesn't make much sense.... I'm losing my mind. I feel like this kind of illness shouldn't exist in this day and age.. It's horrid!
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. 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 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.
are u all in the UK? I am in U.S. The shingles vaccine is available here in chain pharmacies but one must b over 50 in order for ins to cover it. It is a challenge as ins says it must b administered @doc office & doc office says it must b @ pharmacy. When I finally got it straightened out, my daughter had just given birth so I was unable to get it as I wouldn't b allowed near the infant.
Aveno makes the oatmeal soap & it comes in pre measured envelopes. If u can't get it, it can be ordered on line @ Amazon.
I did not have any open sores...just rash which also makes me question the diagnosis. In any event, itch alone can be rather maddening. I was and am quite bruised from the event which is now finally clearing up.
yes this is a UK based website but people from around the world participate. I thinks it's good to learn about other countries approaches and things they find useful....I'm open to ideas as the intense sensitivity is maddening.
In in the UK we have the NHS but I was thinking of going private to get the vaccine....but I've been doing research and I'm in two minds now...I'll continue my research until I come to a final decision.
Although it feels like this is the worst feeling if it goes then I'm grateful . The worst thing is the post pain PHN. At what stage is it considered PHN does anyone know? My pain was much less during the blisters but now they have fallen off and my skin is sore and some parts chapped and raw it feels at its worst. I'm just praying that it all ends and I don't get permanent or long term pain. I have two small ones and can't handle the, and the irritation at the same time .
I really feel for people with PHN they can't forget this nightmare of a disease.
So so what do you do with the oatmeal do you soak it in the bath and then just lie in the bath?
I had had a long soak and rubbed the shingles off (once they were dry) I think I might have been impatient and made matters worse... Now I'm paying for it. Ouchy
I was wondering if anyone has found natural remedies helpful for their shingles especially in soothing and helping the skin heal and become normal again. I used Vaseline on the broken skin and the raw skin once the blisters fell off and that has helped my skin heal quite fast. But the itching has become worse even in areas where there was just the rash but no blisters.
does anyone have any advice about PHN
also has anyone tried natural remedies to prevent shingles reappearing? I've been watching YouTube vids and am wondering if improving veg and fruit intake will help keep shingles away.....this is my first experience with shingles and I hope it to be the last. If anyone has tried anything that has helped I'd be interested to know......
I am losing a lot of hair from using the acyclovir for 7 days but was worth it. And I'm taking amithriptyline for pain in my throat ear and head....hoping it isn't PHN but wondering at what stage does it get classified as PHN.
wishing all sufferers a peaceful nights sleep. 😴
Also so if anyone has any ideas or remedies for reducing pain I
Hi Jubs. I'm not an expert but have read loads of these letters on the Shingles forum. I bought some l-lysine tabs, first lot online through Amazon or ebay, can't remember which now. Second lot from H&B, much more expensive than on line for a lower dose. However, I think they've helped me fight off the shingles but still get some PHN. My doc prescribed Amitriptylene too but no Gabapentin so far. They help me sleep better, I find if I take them approx 12 hours before I need to get up in the morning, ie; between 6pm and 8pm is best or I have a hangover effect when I get up. (Lousy headache which can last all morning!) You can also buy Aciclovir (cold sore cream) online as above! Much cheaper than main chemist. Wilkinsons also sell it cheaper. the generic version not the expensive brand name one! Hope this reply is not sent to moderator for putting brand names etc in, I've tried not to! lol If it does let me know and I'll send a private message, (PM). Try looking at old posts on Shingles on this web page, it's very educational, not many GP's know as much as the people on here! We've had it and learnt how to deal with after a fashion. I had it on left shoulder, arm, hand and some in my scalp too. The C4 dermatome my doc said. Best wishes and keep in touch, it's helps to talk. Ellie.
i really appreciate your message and the information you have provided. I agree the sufferers on this forum know much more than the doctors...
i will be ordering the acyclovir cream thank you...I wish my doc had given these things to me as if only just learnt about it and have suffered for two weeks!
Today i I applied coconut oil and it is proving much gentler and calmer on my skin. I stopped using Vaseline as the open wounds have healed with some layers of skin...it may take months to fully heal and be like normal skin. 8 hope I don't get scars but T the moment my primary concern is the pain and wishing it away...beauty comes later....need to survive first.
im struggling because I have two little ones and have hardly spent time with them the past two weeks😢 it is so hard to do anything with this illness....and you want to avoid all physical contact.
I think ink my immune system was weakened by two steroid injection in the past 3 months and I have been very stressed lately because I have ankylosing spondylitis and it's taking over a year to get on a treatment. I'm worried as I will be going on biological therapy that suppresses the immune system.....so will have shingles repetitively....I fear....
so far ive learnt a lot from this forum and I don't find it confusing when people say different things....I think it broadens your knowledge and options.....nothing will work exactly in the same way for everyone.....it's trial and error for all of us. This is a great place I think as only those that have this can truly understand....everyone else can give sympathy and support but not fully understand how it limits and effects us.... I'm writing I'm cringing from the twitching and tingling in my neck.
I hope everyone finds something that eases their symptoms.....will definitely keep in touch.
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.
Hi Jubs. If you have ankylosing, it's an auto immune disease so you are more likey to get reocurring bouts of shingles I'm afaid. If you have to take steroids or other disease modifying drugs, the same applies. It's best to ask your GP or pharmacist before taking any other stuff as they might conflict. I don't really have any scarring as such but a red patch on shoulder/arm where the worst spots were. Can't see my scalp but it still gets very itchy, especially if i'm hot and sweaty like after housework or in the garden. It's fading slowly. Bio oil is supposed to help prevent scarring. I take Tramadol for pain, it's an opiate type but only available from your Doc. I have osteo arthritis in my spine and other joints, that's why it was prescribed for me originally. (Chronic pain, 24/7)! It helps a bit plus the amitriptylene in the evening as I said earlier. Most of these strong ones cause tiredness and feeling sleepy so you would have to think about that having young children. Your GP is really the only one who can help you with pain control. None of the over the counter stuff is strong enough. In my experience, (72 now), I tried to rest when the chidren did and s** the housework if your feeling ill. If working you will probably need time off. Rest is most important if you want to get better quicker, you have to let whatever immune system you have left do it's job.
Sorry, don't know how to turn auto correct off but try going into settings if your on a smart phone. Best wishes Ellie. X