Shingles

[Lynnsashalily]

I have spent all day at the hospital with severe pain on breast rib and back was told I have shingles absolutely agony nothing is stopping this pain it’s constantly there has anyone else had this ?? I’m losing the Will to live pain so so bad ???

[rabbits65]

Hello, I feel so sorry for you,

I do hope you get some sleep tonight.

[Lynnsashalily in reply to rabbits65]

Have u had this before it horrendous pain can’t get to sleep with it driving me mental 😖😢

[Madlegs1 in reply to Lynnsashalily]

Are you getting Lidocaine patches? They should give you some relief?

[Lynnsashalily in reply to Madlegs1]

No they wouldn’t give me any do they help ? We’re can I get some ? X

[Madlegs1 in reply to Lynnsashalily]

You'll have to ask for them, they're prescription only.

[Shanpa69]

Hi l am the same had shingles since last Saturday l have had it about 10 times in the last two years this has been the worse the same as you the pain has affected my legs can hardly walk my breastbone my face hurts so bad and constant itching not great l can relate take care

[Lynnsashalily in reply to Shanpa69]

What medication are u on are u getting any relief , I had open surgery on stomach 5 weeks ago and the pain of this is worse I can’t understand it ☹️x

[Shanpa69 in reply to Lynnsashalily]

No that’s the worse thing l got the antiviral medication as l am very used to the process however it does not do much for the pain in my case as l am still in a lot of pain l am on a lot of medication for other conditions so can only take paracetamol which does nothing l get your frustration as end up crying due to the pain they just say you have to work through it

[Lynnsashalily in reply to Shanpa69]

Yes Ano I cry throughput the night I’m not sleeping constantly trying to reach it to rib with a cold gel to ease and ice packs I’m missing out today on my sister in laws baby’s Christening no one wants me near them I feel so worthless

[Shanpa69 in reply to Lynnsashalily]

Poor u it’s so awful l know it makes you feel so bad as it makes you more isolated l don’t know how long you have had it but try and be kind to yourself l know it’s hard when your in pain and your itchy and nothing feels right l hope someone brings you back some christening cake to cheer up take care

[Lynnsashalily in reply to Shanpa69]

Have had it six days so far 😭 yeah I feel like a disease hope so would love a bit of cake x

[Shanpa69 in reply to Lynnsashalily]

Okay l know it can last up to 4 weeks so not nice l don’t think health professional realise how painful it is ...we have had it similar time can l can ask how do you follow someone as would like to follow you back

[Lynnsashalily in reply to Shanpa69]

Just click on my pic and u can click a button to follow click that x

[NanaFifi in reply to Lynnsashalily]

You do know that you can’t give anyone shingles don’t you? X

[Cat33]

So sorry to hear that

I hope you get better very soon and the pain eases it sounds awful for you Sorry I can't offer any advice as no I don't have any experience of it

Take lots of care and get well soon 💐💐💐

[Lynnsashalily in reply to Cat33]

Thank you ❤️

[Crystalbowl]

Is this a new outbreak of shingles? If so, you need to get antiviral medication urgently as there is only a 72 hour window for it to be effective and please take it as prescribed. I had an outbreak of shingles just over 12 months ago on my RH torso - from belly button right round to spine and up to under my breast. I got the antiviral meds just in time and took them but I have still been left with post herpetic neuralgia (PHN) pain. It is awful. There are other people on here who have PHN but there are also a couple of Facebook groups. You have my absolute sympathy. My life has been totally crashed by this condition. I do hope that you are among the fortunate people who recover without any further problems. Let us know how you get on. Blessings to you.

[Lynnsashalily in reply to Crystalbowl]

I didn’t make the 72 hour window so they couldn’t give me the antiviral medication what painkillers did u take I’m on naproxen and co codamol and I had some pregablin from before my surgery and it seemed to help but the achy pain is terrible , did u have to stay away from people ?? X

[Crystalbowl in reply to Lynnsashalily]

I have not found any painkillers which really make a difference. I am somewhat limited because I am also on a lot of meds for a heart condition. I was taking a max dose of paracetamol until recently plus 30mg of Amatriptyline daily but I decided that the paracetamol was probably not doing me any good and wasn’t really doing much for the pain anyway. I don’t think the Amatriptyline does much for the pain either but I think does help me sleep which is wonderful as I have been an insomniac most of my life and if I had to be in this much pain through the night as well as the day I don’t know how I would cope. I did try Tramadol but it made me vomit. More recently my GP has suggested Gabapentin or Pregabalin or another one (can’t remember the name sorry) but he said to read up about them first as he knows I am not happy taking stuff and also to check with my Cardiac GP. He said he would be OK about Gabapentin but I am reluctant to try. I have also tried all kinds of therapies, topical creams, lotions and potions but have not found anything which has made much difference so far but I keep trying. My GP says there is no cure you just have to learn to manage the pain until it goes...or doesn’t. So I am probably trying to prove him wrong!! Where are you? I am in NW England.

[Crystalbowl in reply to Lynnsashalily]

Sorry, forgot about the other part of your post. I was actually on holiday in Madeira when I first noticed the rash. I had previously been in a private clinic there for 5 days due to a chest infection which had raised my heart markers. I had missed my flight home because of this and the travel insurers had rearranged it for the day after I noticed the rash. They had also flown a male senior nurse practitioner out from the U.K. to accompany me home and he arrived later on the morning of the rash. He came to where I was staying to meet me and I showed him the rash . He said it could be shingles but he said it would be OK for me to fly as it would be covered up. So I didn’t do anything more about it there as I just wanted to get home. The insurance had also arranged an ambulance from my hotel to the airport in Funchal and another one to meet me at Manchester and take me home. I showed the rash to both lots of paramedics and they all thought it was shingles. They suggested taking me to A&E but by the time we got home it was about 1.30 a.m. on a Saturday and I didn’t fancy being stuck in A&E for the rest of the night then having to get myself home. So I rang 111 the next morning, got an appointment for Urgent Treatment at the hospital and was prescribed the antiviral which was just inside the 72 hour window. My understanding is that it is not really contagious but best to keep it covered if you can as someone could catch chicken

pox if they have never had it. I did stay away from people mostly because I was pretty ill not only from the shingles but all the other things but I did go away again a week after I got home to go on a kind of annual retreat with 6 other women. We were there for a week and they totally looked after me and nobody caught it including my partner or the friends I had been staying with in Funchal.

[Lynnsashalily in reply to Crystalbowl]

Wow you been through hell im so sorry you’ve been through that it’s horrendous yr a brave person and I’m glad u went on retreat god knows u deserve it , we have no choice so we to just cope before I had it I never know really what it was I thought a cold sore was shingles but I’ve barely any sores just under my breast they haven’t busted or anything yet it’s the band of nerve s attached around ribs and back driving me mad more than the rash itself 😭x

[Motorhome31]

It is so painful. Had really bad outbreak. Had antivirals immediately but still 18mths on have back pain. Sometime worse than not. Been prescribed Amitriptyline for night which aids sleep & pain.

[Lynnsashalily in reply to Motorhome31]

I can’t cope with it now never mind having it 18 months later , how long did u have it tho and we’re about s on body

[KatieRL]

Hi there - yes i have pain in exactly the same places. If the pain is new you need to get antiviral meds ASAP. Pain after shingles is terrible and I am currently taking Pregablin/Carbamazepine/Oxynorm to control it. If you can’t get help do ask to be referred to a pain clinic. Extended pain after shingles is called Post Herpetic Neuralgia and there are two great FB communities where you will find excellent help and advice. Do get in touch if I can help any further. Wishing you well Kate xxxx

[Lynnsashalily in reply to KatieRL]

Thank you the pain isn’t new I’ve had it 6 /7 days now was to late for the antivirals but have pregablin from prev from a mass in my spine before surgery and have found taking that has helped it constantly throb it’s still there but bearable to cope with tho I’m a bit zombie feeling but better than severe pain , I’m suppose to go to my uncles 50 th tonight have u ever had a drink on any medication it’s been 4 months since I’ve even had a drink or left the house don’t wana miss it but scared aswel x

[strongmouse]

I had mild shingles a few years ago and the itching drove me nuts! Fortunately no pain. It usually only last about 3 - 5 weeks. As I understand it you can have over the counter pain medication (paracetamol, ibuprofen) for general mild pain, but if it is more severe then you might need a prescription. The virus can affect the nerve and cause neuropathic type pain.

Currently I use low dose of nortyptaline for neuropathic pain (different cause to shingles) and it works well. Have had pregabalin and although it worked well it knocked me out completely! Talk to your doctor if it isn't improving.

It is horrible when you are ill and miss special events. Hope that someone was able to take some photos and no doubt you will soon be well enough to spend some time with the baby. I've missed so many events over the years from long term illness and try to stay involved in some way even if I can't be there in person - send a text, facetime, ask for some lovely photos and see the family later. I missed my son's wedding as I was in hospital having had emergency surgery! Fortunately my other son and husband (who also missed the wedding as he was with me) set up Facetime and so I was able to speak to them briefly from hospital and they got everyone to upload lots of lovely photos. Not the same at all, but sometimes illness happens.

Re your uncle's 50th if you are well enough then could you go for a shorter time just to see everyone briefly? Tell them that you are still recuperating.

Hope you feel better soon.

[Floid]

Hi sorry to hear about your pain, I had a shingles-type virus about four years ago which was horrible & left me with neuralgic pain in my legs and some other symptoms of permanent nerve damage. I'm on the maximum dose of Pregabalin twice daily and Codeine Phosphate as & when, which I can only take twice a day as apparently too much will cause the body to grow new nerve endings! So could have around 7 hours/day without pain. The Pregabalin is essential for me now as without it i can barely walk...

About a year ago my partner who works in healthcare told me that if I take Paracetamol four times a day every day that it may start to have an effect. It didn't work at first but after a few days kicked in and now I can be almost entirely pain-free most days other than first thing in the morning and last thing at night if I'm up late (which I usually am). I juggle this with the codeine for the sake of my liver and take days off both if I've got nothing to do but sit around & read - I never intentionally miss the Pregabalin though. Hope this is of help to someone.

[Lynnsashalily in reply to Floid]

So what’s your medication each day ? Pregablin leaving me really spaced out and I’ve to drive most days I’ve now got pain when I pee and it burns 🥵 x

[Floid in reply to Lynnsashalily]

Pregabalin 300mg morn & eve, Paracetemol 1000mg 3-4 doses/day, Codeine Phosphate 60mg up to 2 doses/day. I'm taking much less Codeine now I'm taking the Paracetemol and experiencing less pain overall.

How long have you been taking Pregabalin, maybe you'll get used to it or perhaps Gabapentin would be more suitable in your case? Could be worth a try if you can't get on with Pregabalin. If you aren't already maybe try drinking loads of water to help ease the pee burning x

[Crystalbowl in reply to Floid]

Hi Floid. Was interested to see that taking the max dose of paracetamol 4x daily helped relieve your PHN pain after a few days. I took the max dose of paracetamol for almost a year and decided it did very little for my pain but was probably not doing me much good long term so I stopped taking it a few weeks’ ago. The pain is still awful but I suppose I have kind of got used to it after a year but it is still messing up my life. I am still searching for what works for me but it is wonderful that you have found something which works for you.

[Floid in reply to Crystalbowl]

Thanks, yes it took me a while but if my partner hadn't suggested it I wouldn't have known as it did nothing for my legs in isolated doses. It seems every pain is different and it's all down to trial error & patience. Best of luck.

[NanaFifi]

Did you catch it in time to get the tablets?

I had shingles in my lower back a few days after shoulder surgery in October. Luckily I recognised what it was straight away and was in time to get the anti viral pills. I increased my Nortriptyline to help with the pain. I hope it clears up quickly and you get some pain relief.

Fiona x

[Lynnsashalily in reply to NanaFifi]

No didn’t get it on time did the norttripyline work for u ?

[NanaFifi in reply to Lynnsashalily]

Yes, the Nortriptyline helped but catching it early really helped. I was already on Nortriptyline and doc doubled my dose, I m also on slow release morphine but I don’t think that made any difference. X

[Lynnsashalily in reply to NanaFifi]

Dose it give side effects like pregablin does leaves me dopy I’ve now got burning when I pee and not much coming out 😰it hurts x

[NanaFifi in reply to Lynnsashalily]

The Nortriptyline doesn’t give me any side effects. I couldn’t tolerate pregabalin because it turned me into a zombie!! Cystitis? Best speak to your doctor. X

[Lynnsashalily in reply to NanaFifi]

Yeah I was speaking with de today he started me on amitriptyline and I I got antibiotics for the urine infection hopefully that works have u ever been on that ? X

[NanaFifi in reply to Lynnsashalily]

Glad you got that sorted out, your immune system must be really low before you’ve got shingles and a urine infection. Amitriptyline is what they refer to as a “dirty” drug so it has more side effects than Nortriptyline. It really increased my appetite, I simply didn’t have a “full up” signal and was constantly hungry, I put on nearly half a stone in 2 weeks so I asked for something else. Doctors usually prescribe Amitriptyline first as it’s also much cheaper than Nortriptyline. Mind you, not everyone experiences the same side effects so fingers crossed you’ll be fine. Hopefully it will be short term and the shingles pain won’t last too long. X

[Lynnsashalily in reply to NanaFifi]

Took two 10 mg last night took ages to sleep I’m not as zombie as I was with pregablin but I can feel the pain more now than when I took pregablin even with naproxen and co codomol so not sure if it’s gona b for me after the big surgery I had to remove the mass I’m trying to lose weight not put on awe god there’s no end is there can’t win do u only put on the weight if u eat or will the tablets still make u put on ? Yeah my immune is very bad low x

[NanaFifi in reply to Lynnsashalily]

Tablets don’t make you gain weight but gave me an uncontrollable urge to eat! If the Pregabalin works better why don’t you stick with it? If it’s just going to be short term could you not cope with the side effects. Also side effects tend to diminish after you e been taking the tablets for a while. X

[Crystalbowl in reply to Lynnsashalily]

Hello again Lynnsashalily. I take 30 mg of Amatriptilyne in the late evening. I think it helps me to sleep through the night but doesn’t do much for the pain I don’t think. I am eating more than I was but have put this down to being generally in a better state of health than I was when all this started twelve months ago. I had lost a lot of weight so am quite happy that I have put a little back on but it has certainly not caused me to feel hungry all the time and I certainly don’t feel to be piling weight on but, as everyone on these sites keeps saying, we are all different. I really hope you get some real relief from this soon.

[Lynnsashalily in reply to Crystalbowl]

Thank you I’m taking 2 10 mg at night of amtytripline and I can’t get to sleep nothing seems to help me to sleep pain is getting easier tho for def s

[Crystalbowl in reply to Lynnsashalily]

Great to hear that your pain seems to be getting easier and I hope that trend continues until

you are pain free. Bit of a bummer that the Amatriptyline is not helping you get to sleep though. Hope you can find something that does help.