Shingles advice please

[Z_oo72]

Evening all : ) Please can any one advise me.

I have developed shingles, all over my right side, tummy and round to the mid back up toward my neck. This is actually the worst pain i have ever experienced in my whole life. I had to go to A and E on Easter Monday, they were fantastic and prescribed Lidocaine patches, Gabapentin - I already take that any way and a course of anti viral medication that i finished yesterday.

My goodness what a drama.

The blisters have all dried up now but i have open sores in big areas. i am trying to keep everything clean and have tied a baggy t-shirt up around my top half to let the air get to the skin. But i can not stand to have anything touch the area where the blisters were or anywhere in my mid section. even my breasts hurt and my chest. It feels like indigestion but going across my body ,not up my throat as it were.

Im taking 1500mg Gabapentin atm and paracetamole also helps with the stinging skin. but i have having very hard muscle spasms all under the affected area and deeper into my tummy and even under my arms, inspite of the Gaba. Pinching stich pains that set off at the slightest touch.

Is there anyone out there who has had this and can advise with recovery.

- The normal skin on my tummy is so dry now, flaking off in small discs i have E45 - Gosh even touching my normal skin sets off shooting pains and cramps. Im also freezing cold down my right side and keep erupting in goose bumps down that side. My wiring has gone to pot it seems.

Any advice would truly be welcome xx

Many thanks

Zu x

[Dinkie]

Poor you I had Shingles all down one side of my face and body - weird just one side. Like you the pain was the worst thing ever. Took me 4 weeks after the last of the marks disappeared to actually wear normal clothes but we are all different and I was in the middle of a flare too.

The antiviral takes a time to get into the system but they do help. My problem was heat not cold and I used aloe vera which took the heat out. For dry skin I use either vit E or sudacrem.

Have the same problem with wiring. Today I was so hot yet my friend had her coat and gloves on when we went for a stroll with our dogs - she just thinks I am very odd!

Sorry can't be of much help. Hope you start to feel better soon.

[Z_oo72 in reply to Dinkie]

Bless you, on your face! You poor love. Shingles is bonkers. Thanks for the advice on time scales and vit e creams and aloe. i will get some tomorrow.

I have a feeling that Fibro has magnified everything x 1000. i will live. its just a massive set back.

never mind.

all the best and thanks again

: )

[Dinkie in reply to Z_oo72]

Yes fibro does magnify things but even "normal" folk are floored by the Shingles virus. The main thing with getting it on the face is to make sure it doesn't go into the eye - the doctor told me I had to go to hospital if it did. Not sure what it does to the eye but I was lucky it didn't go that far. Hopefully you will feel more comfortable soon.

[rosewine]

I have every sympathy as I am a bit of a veteran of shingles as I have had the misfortune of having it three times the last time was the worst.

Trouble us the shingles pain is all to do with the nerve endings hence the symptoms you have been having. I found putting cold compresses on the areas that were really jangling helped. I do think know whether your GP would let you have some anti inflammatory medication which might help ease it.

You are doing the right thing for by wearing the loose clothing. Lidocaine patched can be excellent for helping with the pain but make sure that you don't put them on places where the skin is broken. Do rest as much as possible. Sometimes having a bath in just warm water can help. Drink plenty of fluids.

Unless you have had it I don't think anyone can fully understand how bad the pain is with a severe attack of shingles. I do hope you are feeling better soon.xxx

[Z_oo72 in reply to rosewine]

Hey Rosewine, this is really sound advice, thank you so much.

Are you ok now?

Can shingles keep coming back? I wonder what triggers it to activate. I have had terrible pains in my lower back for months and then there seemed to be lots of bubbling and pinching stitches inside my tummy and down the right hand side just days before the shingles appeared ... maybe its inflammation that triggered it - im not stressed and i don't think my immunity is low as i am usually the one that never gets colds when others around me a dropping like flies... I will ask my doc.

Anyways, thanks you so much for the info and best wishes.

All the best to you too

Z : )

[rosewine in reply to Z_oo72]

Don't know if it helps. I have had it three times. Once when I had started a new job which was very stressful and that I initially took just to gave a job. The second time I had it very badly it was from my neck upwards n my ear, mouth eye and head exactly splitting my head in half. There was some horrible days when GP thought I would have damage to eyed had to go to DC's every day for a week then every two days. Even now years later if I am low that area aches. The third time my husband had had a breakdown and see were battling for just ESA we had only my part timecard and he was very ill. I then had terrible pain just like the shingles in the rib areas in a circle as though every nerve endings was on fire and shocking I could hardly breathe for the pain. Go in the end said he thought it was what he called a "silent" form of shingles without a rash just like Telynores

[Z_oo72 in reply to rosewine]

OMG, that sounds horrific. Jeepers. TBH, i think this is my second time of having it. The first time, i think i did not realise but now i know that , that was prob's what it was. Itchy blisters and weird sensations at the base of my back. I ignored it although i realised something was up. i did not go to the doctor because it did not bother me too much. it dried up and just went away on its own. I will tell the doc.

are you ok now? Did you have to take Gabapentin?

Z

[rosewine in reply to Z_oo72]

My Gp put me in Pregablin which is the sister drug to Gapepentin. Unfortunately over 6 years later I am still on it as without it the burning and zapping electrical sensations are unbearable. I absolutely dread ever having shingles again. Hope we both manage to steer clear of that.x

[Z_oo72 in reply to rosewine]

Oh my gosh poor you, 6 years is one hell of a long time. I really wish you well.

I know exactly what you mean when you say that you never want it to come back, me too. i can't actually imagine having to go through this nonsense again.

On the up side of all this, the Fibro symptoms have subsided some what, I think the Gabapentin is keeping it at bay. No morning stiffness or aching joints, no vertigo... I took 1800mg yesterday so i guess it no surprise there then.

Im not sure about going back to work just yet but i do feel more positive about everything at the moment for some reason. The sun is out and its warm where i live. I have been walking in the woods and fields near my house regularly, its making a big difference.

Anyways, Thanks so much for all your time. I really appreciate it.

I hope you keep well

Best of wishes

Zu xx

: )

[Janet28]

Hi Z_oo72 I'm so sorry you are going through all that pain, it really is the most painful thing ever. I haven't had it personally but my grandma got it yrs ago & i remember the pain she was in & i remember thinking, I wouldn't wish that in my worse enemy.

I'm not a doctor but were you treated with antiviral Medicine ? Also it's recommended to take something like ibuprofen along with topical antibiotic cream applied to stop infection. In some cases if it's severe, which sounds like yours is pretty severe, you can be prescribed steroids.

So I think by what your saying, a call to your gp sounds the best thing to do because there are more things that can help because you shouldn't be that bad in my mind.

I would also think lotion would be better than cream, intensive care lotion, something with no perfumes of course, this would be easier than trying to rub e45 on.

I don't want to worry you but it can sometimes take a long time to go and you can get a complication from it which is called postperthetic neuralgia and i would imagine that's why you have the gabapentin, you don't say the dose. Maybe your doctor could increase it, this would ease the nerve pain. Like I say, I'm not a doctor but I have done some research on NHS website & webmd which both have authentic & current info on shingles, so hope this helps my friend & i wish you a speedy recovery. Let us know how you get on.

Luv Jan xx

[Z_oo72 in reply to Janet28]

Thanks so much Jan for your reply, yes i will give the doc a call i think. I din't know that shingles was so painful.

I will be ok. Im still alive if not a bit scabby. hahaha

All the best to you

Z : )

[Janet28 in reply to Z_oo72]

Your welcome honey, it really is hideously painful & i don't think a lot of people know this. I couldn't believe it when my nan had it & saw how Ill she was. My grandson had chickenpox when he was 3 & it very quickly got infection & they were going to admit him to hospital at one point. I think there .can be complications with it & you have to keep an eye on it.xx

[Z_oo72 in reply to Janet28]

Yes, its tough to contend with for sure. I had no idea. My friend had shingles when we were in secondary school, on her face and down the right hand side, we just didn't understand what she was going through, she was away from school for months. TBH, i think i may not be back at work for another few weeks yet. I think i may get a discaplinary for my absence but i don't care. The open sores are horrific, i have dressed them and am trying hard to look after my skin. its so painful that i have to start taking pain killers at 3 am because that is when the pains start.

Im ok and am a fighter. its ok

xx Z

[Janet28 in reply to Z_oo72]

Oh bless you, your poor thing, it must be awful. Don't worry about work, gosh they couldn't expect you to possibly go feeling so Ill & pain like that. I think most ppl know that shingles doesn't get better in a wk or 2 unless you are exceedingling lucky.

Xxx

[Z_oo72 in reply to Janet28]

yeah for sure. It will be fine.

Thanks again xx : )

Z

[Telynores]

I agree with rosewine . I am still suffering from my second dose of shingles (2+ years ago). The Post Hepatic Neuralgia from my first dose 35 years ago - which forced me to eventually give up work - and the last dose.

As Janet28 said, maybe your Gabapentin could be a higher dose, your GP should be the one to tell you that.

You are fortunate, maybe, all I had was the anti viral med and Gaba but then again, I had no rash with my latest dose and very little with the first. I'd rather have had the rash and not the post hepatic neuralgia, if there's a choice.

[Z_oo72 in reply to Telynores]

Hello Telynores and thank you for your reply. Are you still in pain?

I take a very low dose of Gabapentin for the Fibromyalgia, 300mg per day and its very good for this, game changing even. But the hospital have said i now need a starting dose of 900mg per day raising to 1500 if i need it. Currently i need it and im ok on that dose as long as i don't have to do anything complicated. Some days the pain is such that i could take more but i try to just deal with it. More gaba would floor me. but i will use it if i have to.

Last night the chills and weird tickles and itching i have been getting down my right side were so bad that i could not sleep. pinching stiches across my belly and across my back. Eventually i got up and made a hot water bottle - wrapped in a soft hand towel, to put on the area. It really helped and i fell asleep in the end.

Today my belly feels like it has slid and scraped across gravel and high speed... im going to use some Bepanthen cream and lots of tlc.

Best wishes , i hope you feel better soon

Z : )

[Telynores in reply to Z_oo72]

Yes, Z_oo72 , I do still have pain, I am on 600mg 4x a day. I have been on it for 2 years at that dose, I'm unsure now whether the pain is general aches which the gaba is not dealing with but I've lost the 'huge' pain which had me in tears and unable to sleep.

I do have OA which is playing havoc with my right hip down to my ankle for which I began to take Opiate painkillers fairly recently, they don't deal very well with that pain but I can, mostly, sleep.

It's all about getting a balance where you're happy with the amounts of meds but can deal with the residual pain.

Just my opinion, I wouldn't keep the rash moist with creams, it may be prolonging the rash by stopping it drying up.

Good luck.

[TheAuthor]

Hi Z_oo72

I am so genuinely sorry to read this my friend, and I have pasted you a link to the NHS Choices cache on this issue:

alpha.nhs.uk/shingles

It may also be a good idea to keep going back to your doctor until they have cleared? I want to sincerely wish you a speedy recovery my friend and please take care of yourself.

All my hopes and dreams for you

Ken

[Z_oo72 in reply to TheAuthor]

Thanks Ken, Yes i have seen this site but thank you so much for posting. The NHS Choices site is so helpful isn't it.

I will see the doctor again until i feel better. I cant see how i can work until i feel 100% I'm a Gardener so lots of movements and lifting. makes me feel ill just thinking about it tbh ! haha.

I hope you are ok today, enjoy your day

All the best.

Z : )

[TheAuthor in reply to Z_oo72]

Hi again my friend, I agree with you as gardening in your condition is not really an option, good luck and I truyl wish you a speedy recovery.

[Z_oo72 in reply to TheAuthor]

Thanks Ken : )

[nadine111]

i had shingles many years ago before fibro. had it on one side of my face. several times i've had terrible pain at the spot where shingles first appeared. i didn't know shingles could come back for another visit until a doctor explained it to me. she gave me medication to keep around to take the minute i feel i'm getting shingles back. luckily i haven't had it reappear since she gave me the medication but suggest anyone who has had shingles talk to their dr. about medication to have around when get another visit. i can't recall the name but if someone is interested i can go look for the bottle and let you know.

[Z_oo72 in reply to nadine111]

Hi Nadine, thanks for your reply. Yes please to finding out what the medication was. Its really good to know that there is a preventative available

: ) zu

[nadine111 in reply to Z_oo72]

the medication is called valtrex. there also is a generic if med is costly. also, noticed there are discount coupons can use. if anyone ever uses the valtrex would love to know the results. be well..

[Z_oo72 in reply to nadine111]

Ah Brilliant, thank you Nadine i will ask about this next week when i see the GP.

Nice one : )

[Z_oo72]

I just want to say, a big thank you to everyone for the excellent replies and good wishes. It really helps to be able to ask people who have experiences of this.

Lots of love to every one

Z x