Shingles: About a month ago I got a severe pain on my... - NRAS

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Shingles

brewster12
brewster12

About a month ago I got a severe pain on my left side which gp put down to a back injury which flares up now & then.Hecgave me co dydromol & diazepam which usually works within a few days.A week later I woke at 5am in severe pain on left side under ribs & dialled 999 on my mobile as our phone line,internet connection & medical alarm were out of action from a lorry knocking down the pole.My husband is deaf & in another room so couldn't hear me shouting for help.I thought it was a heart attack & didn't want to collapse .Paramedics came ,did obs & thought maybe a clot travelling to my heart so took me in to hospital. ECG,X Ray's,blood tests all came back clear so discharged. Pain put down to back injury & trapped nerve.Pain gradually got worse,phoned gp several times who assured me it was related to my back pain.A week later woke at 3am with unbearable pain & taken to hospital again,kept in overnight,same tests done all clear & discharged again .Told it was constipation from taking painkillers,given an enama & sent home still in awful pain.This went on for another week & I was in the most awful pain that nothing would stop.After a week I phoned gp again in tears & begged him to help me,he said hed spoken to hospital & the pain was from my back & to keep taking the painkillers. A week last Sunday the pain was excruciating, I was rolling round the bed crying with pain & a neighbour pressed the medical alarm button when she saw me.My husband is disabled & wasnt able to help me.Ambulance came & paramedics took one look at me & carried me to ambulance, they gave me 2 shots of morphine which helped a lot.2 hour wait to be admitted because of covid but morphine had dulled the pain.Got admitted same tests done again &at 2am they were going to discharge me again.The morphine started to wear off & the pain was back with a vengeance & the A&E dr went into the main hospital & got a consultant to come to me.He stripped me & searched all over for a rash but found nothing & asked for another blood test.That came back an hour later & he said I had internal shingles.Gave me Pregabalin & painkillers. They are helping but still in a lot of pain & exhausted. I have been home a week now but have a flare up of acute pain every evening & every morning that takes at least a couple of hours to calm down.I have never felt so Ill. As I am my husband's sole carer I wonder if anyone knows how long this will go on for.Sorry for long post but needed to get it out of my system

12 Replies

Oh gosh Brewster that is so awful 😢and confusing too when nothing to see re a rash etc. I can’t help you on internal shingles as I’ve only had a small but painful occurrence of external shingles late 2019. Do shingles show up in the blood as a specific test or is it the raised levels of white cells etc that indicate and the symptoms you described which made the docs say internal shingles. Have you been able to take any anti virals or maybe not appropriate to your case? I took them to try prevent post herpetic neuralgia. I lost sensation of a 4x4 inch patch of skin on my side/hip surrounding the rash/tiny blisters, but it did return to normal after a month or so. I hope you will start to feel improved soon. 💗

Oh my word. It sounds like a real life horror story. I do hope the treatments work quickly for you

MoniqueB
MoniqueB in reply to Gnarli

Oh no! That sounds like a terrible month - I totally understand your need to vent. While I haven't experienced the condition, my sister got (external) shingles a few years ago and I know, from her, how painful the condition is. I really hope that you will feel better soon. If memory serves, my sister's shingles took about a month to clear up.

brewster12
brewster12 in reply to Gnarli

Its been a nightmare, felt like no one was listening to me.I knew it wasnt back pain & second time in hospital I arrived there at teatime & it was 2am before a junior dr appeared looked at me & prescribed 2 paracetamol even though I told her I had been on heavy duty painkillers which were not touching the pain.Waited 5 hours to be discharged then there was no transport so had to pay £31.60 for a taxi home.I didn't have that much cash & he wouldn't take a card so he took me to a Morrisons cash point & I had to walk across car park in my nightlife to get money in the pouring rain & still with the awful pain.I needed to get home as my husband cant walk,has a bad heart & falls on a regular basis so was worried as he was on his own.The Pregaballin is helping though the pain is still there & has spasms when it really hurts.Im experimenting with painkillers & diazepam when this happens but haven't been told how long it will go on for at this intensity.I feel very lucky though that the Dr in A&E went & got the consultant to me & he knew what it was.He asked for another blood test to be done to confirm it as they did bloods when I got there that they said were clear.I was working my way up to refusing to go home as it was the 3rd time I'd been taken in .The morning after I got home my gp rang to see why I had called an ambulance out again as if I did it for no reason,I shall have words to say to him once I feel a bit better.I was crying on the phone to him the previous day to do something to help me,he just kept saying was my back.

MoniqueB
MoniqueB in reply to brewster12

Two paracetamols? Good God, talk about adding insult to injury! I can totally relate to how frustrating it is to feel as if you're not being listened to. Although it sounds as if you've been through hell, thank goodness for the A&E doctor and her/his consultant. I truly hope that you start to feel better sometime soon. While you're caring for your husband, it's also very important to care for yourself too. The good thing about shingles is that most people make a complete recovery. Hang in there Brewster.

Aww brewster, that's terrible, what a nightmare you've been through - I couldn't believe what I was reading. You really have been treated so badly prior to your last visit to hospital. Thank goodness for the A & E doctor who had the sense to get a consultant who knew what he was doing. Your GP! Well nil out of 10 for him, he sounds like a waste of a seat. I really hope you feel better soon as you have had such bad treatment, it's nothing short of disgraceful. All the best to you. xx

I had similar experience and a number of X-rays as thought I'd fractured my hip and spent several days in hospital on a pressure relief bed. I took the Pregabalin for several months then weaned off slowly. I feel your pain and rest helps as did Deep Freeze gel.xx

That sounds awful - poor you!My husband had german measles as an adult and had awful throat, chest and stomach pains as well as external spots and the GP said that it was internal measles which I'd never heard of. At least the rash meant that he was diagnosed early.

I’m so sorry you have endured such pain. I was misdiagnosed with shingles and dragged my left leg around like a painful anchor for months until one doctor finally helped me. It left me with permanent nerve damage. I can’t imagine internal pain like that. I’m glad you finally found help. Shingles is a dirty word as far as I’m concerned. As mine were external, he gave me a steroid ointment to use which helped heal the sores within days and alleviated the pain giving me relief. The leftover pain i have is sciatic nerve damage. It is more painful some days than others and some days not bad at all. It can make my walking difficult. But it is with me forever. I’m hoping that your meds will break down your pain until it’s gone completely. I wish you a complete recovery. God bless you.

Brewster12, I am sorry that you are suffering because of internal shingles. I had a similar situation that started at the beginning of October and because GP not seeing patients it took until the 17th of December to be diagnosed. In the meantime I was sent to the Rheumi as GP though it was related to the prednisolone and then to the Breast consultant, who sent me to have a mammogram, which was horrible as the shingles was in my left breast and back. I was given the all clear by them. I contacted the GP many times as pain was not getting better and during that time I had not spots. By the 19th the pain felt like someone was stabbing me on my breast all the time so after another chat with the GP, she sent me to a hospital clinic as she said that she still couldn’t see me. Luckily the 2 doctors at the clinic saw my only 2 spots on my back and shouted ‘shingles’ at the same time. I was given antiviral pills even after all the time, as they said that it will help but the next few days, I was bedridden with high fever and excruciating pain. Luckily I contacted the Rheumatologist helpline on the day I was diagnosed, who advised to stop Benepali injections and Hydroxy pills until I felt better and to keep the prednisolone. I was 4 weeks without the medications but luckily I didn’t have a flare, but the pain still there in a minor scale. But every time it increases, I have my daughter checking my back just in case. I have been told that internal shingles’ pain can take up to a year to completely disappear. So you are right to have a rant, I know that GPs have been busy but a lots of illness have been missed because them not wanting to see anyone. My rant is done too! 😉😂I do hope you feel better soon. xx

brewster12
brewster12 in reply to Caribatty

Thanks for your reply I am on Pregabalin but still in a lot of pain it's not really controlling it at all.Im also on co dydromol & diazepam which they gave me when insisting it was backache.I am in bed mostly as cant sit or the pain is excruciating because it's in the waist area & if I get up I'm really disoriented .Really not much help to my husband who is 86 housebound with numerous health problems, problems walking& deaf.At the time this started we had no internet or phone line or medical alarm .He couldn't get help because he cant use the phone but it wasnt working any way & that lasted 3 weeks so I was having to ring for help myself on my mobile.Now he's I'll & has gone back to bed which is unheard of,he seems to have a very bad cold coming as he has a very sore throat spreading down to his chest.I have 2 telephone appointments with a dr at 3pm this afternoon. I think he has done too much trying to look after me.Its all a night mate & by the sound of everyone's comments it's going to be a long term problem .I'm hoping the dr can give me something that at least makes this awful pain bearable.

Caribatty
Caribatty in reply to brewster12

My goodness! Everything happens at the same time. Have you got someone who could help nearby o someone from your bubble? Speak to the doctor and ask for help as you both cannot help each other. I know we are in lockdown but caters are still visiting and helping people in need. I do hope you and your hubby get better soon. Let us know how you are getting on. PS. Just a thought, if you are taking medication that affects your immune system you need to check if you have to stop as that will not help with the shingles. xx

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