Calling 111 with shingles.

Infections
1

First post here and wanted to share some info with readers in the UK. I realised about 7pm Friday evening that the terrible pain in my shoulder and back followed by a small red rash on my back was probably shingles and a bit of googling led me to believe that I needed to get antivirals quickly to avoid complications. I was very loathe to call 111 but didn't really have an option, knowing it couldn't wait til Monday morning. To cut a long story short, I was directed to the a and e dept of my local hospital to see an out of hours doctor who told me I'd done the right thing by taking immediate action and certainly wasn't wasting his time.

I'd read before that shingles could be painful, but nothing has prepared me for the reality. I'm bedridden at the moment as I seem to have two different sites of the rash-one across my left shoulder blade and the other right round the top of my arm and down to my elbow. The rash under my arm is the most painful but the 'deep' pain is still in all these areas. I'm just praying it doesn't spread further. I cannot bear to wear any clothes (yet alone a bra) and don't want to walk around naked if I get up!

I dont  know if anyone else feels as I do - almost guilty for being ill as it means I can't do anything at the moment except rest. I'm 63 and this is my first attack and the worst pain I can remember having in my life - and I've had three children......

This seems a very supportive group and I'm pleased to meet you all, wish for all our sakes it had been other than this way though!

 

2

The fact that you got antiviral medication ASAP is very important!  Hopefully it was within the 72 hour "window of opportunity" and will prevent you from having a prolonged case, as many of us have experienced.  My shingles ran from the top of my left arm onto my hand and thumb.  The worst patch was/is on my hand and thumb and now, 12 weeks later, remains very sensitive but the pain is not nearly as acute as it was in the first two or three weeks.  There are some creams that can give some relief.  You hav probably been prescribed with something like Lyrica for pain.  I was taking one Lyrica at noon and two more at bedtime.  I've now reduced that to one at bedtime.  The most encouraging thing I can say is that it will get better!  

3

Not gonna say you're lucky but at least you didn't get it on your face or head with the possibility of getting it in your ear or eye!

 

4

Dear Mynxie,

Herpes Zoster-Shingles is certainly the worst pain I have experienced in my 65 years of life, including induced labor, without analgesicsaying and eleven surgeries. I am so sorry for your suffering from this disease.

We're you given antivirals and analgesics besides acetaminophen and Ibuprofen? I surely hope so, as you have a right to not suffer from the pain.

It is a doctor's duty to alleviate suffering.

Also, if the pain is not well controlled by the end of the first month, the risk of developing Post Herpetic Neuralgia PHN greatly increases. I know we as women are taught not to complain, but as a recurrent Herpes Zoster-Shingles every three to five weeks for the past twenty years, I advocate for you, the patient. I did not receive a diagnosis or analgesic for the Herpes Zoster-Shingles the first time, and I truly was in agony as it was in my inner ear and center of my head. It took three weeks for the rash to appear. I hope you have someone to help you....cool compresses help some..No heat as that increases the pain.

I am a Nurse Practitioner in the States.

Please let me know how you are doing.

Best Wishes

Merry Juliana

Please tell me what you are doing for the pain.

5

Thank you for your replays and yes, I do think it's lucky I haven't got in on my face or eyes, I just cannot imagine how that could be bearable.

the doctor prescribed a course of Aciclover tablets plus 10mg of amitriptyline taken before bed every night. I told him I had some Zapain tablets 30/500 codeine and paracetamol) that I'd had prescribed for back pain a while ago and was told to take them too. When I'm fully dosed I feel very spaced out but that's not necessarily a bad thing at the moment. 

So so sorry to hear how poorly you've been, I know I'm just at the start of it, so agony though it is at the moment I also have the joy of knowing it's probably going to get worse before it gets better. I assumed the shoulder pain was from 'sleeping funny' or having strained it somehow without knowing it, and because the first rash came up on my back I don't know how long it had been there before noticing it. It was probably 4 days from the onset of the pain before I realised what it was.

if anyone has had this under the arm before I'd love some tips - will it be ok to use deodorant or on top of everything else do I resign myself to being a very smelly lady for the next few weeks?! 

6

Hi Mynxie. Sorry to hear you're suffering the dreaded Shingles. It truly is horrible, worse pain than labour! I think probably cool showers regularly and maybe baby wet wipes, (perfume free) in between would be better than anti perspirants as they might make you itch and pain worse. I had it on my right shoulder, arm down to the hand, wrist and thumb and still have the PHN almost two years later. I don't think I got the anti-virals quick enough either as the pain came after the rash appeared on shoulder/upper arm first and I didn't notice it for several days. Carry on with the pain meds and whatever the doc prescribed. If it's not enough, go back to him/her. Amitriptylene helped me at night, an old anti depressant but often given for this type of pain now. Best wishes, Poll rolleyes

7

Hi they do sell cream strictly for shingles and I was on lyrica for quite some time. To this day it's healed but stress and wind and sun flares up the main nerve I also put lidocaine ontent and pAtches cut small. Hope this helps u. God bless u.

8

Hello Mynxie,

I started with shingles last June and have had three recurrences since then. There was a delay in getting me on antivirals the last time because my doctor prescribed an alternative medication that turned out to be unavailable. The result was that I've developed a bit of post herpetic neuralgia, so you certainly did the right thing in getting it diagnosed and starting on antivirals quickly.

Thankfully, my incidences have been relatively mild - especially the recurrences. 

The first time I was diagnosed I was prescribed codeine 30mg alongside the antivirals but I'm now on amitriptyline for the PHN. I think your dose of 10mg is the minimum that you can take. My doctor started me on 20mg (2x20mg) and has since prescribed 25mg tablets, which I'm finding much better at controlling the pain. My pain is relatively mild - it feels as though I've pulled muscles in my side - yours sounds much more severe and I wonder if it would be worth asking your doctor if you can increase the dose. I think the maximum is 75mg.

I do hope that you get some relief, and quickly.

David

9

 My initial dose of amitriptyline should read '20mg (2x10mg).

 

10

Thank you for your advice. I spoke to the doctor on the phone this morning and she has upped the amitriptyline to 25mg. I know this will really knock me out but at the moment I'm quite happy with that - anything is better than the constant searing pain. Its a shame in a way that there isnt more of an outward 'show' of the infection - half a dozen or so patches of rough looking skin doesn't relate in any way to the pain I'm experiencing. I think my husband understandably can't get why I'm making so much fuss!  I am still in bed as I find that when I get up the pain seems to intensify at the moment. Maybe when I take the increased dose age tonight it'll be more manageable tomorrow.

11

I'm glad they've upped your amitriptyline. It may or may not knock you out. It may make you drowsy but it can also give you disturbed sleep. It tends to do both to me.

However, if you find it does give you relief from the pain, please be careful not to do too much. It's tempting, but you may just need to rest. Trying to do too much can simply exacerbate the condition.

As for the rash, I've only ever had a fairly minor rash that looks a bit like nettle rash. It's the other symptoms, which can be very varied, that often cause the most problems.

Hope you get some relief soon.

12

Sorry to see you're now part of "Our Club". Try not to beat yourself up (but I still do it) about missing the signs you had shingles. I worked as a medical secretary for 30 years, diagnosed my husband (twice) and my father with shingles. However, they had a much more recognizable rash before much pain. My story is very similar to yours, except I never got the antivirals at all as we missed the window. If it helps at all, it solves a mystery for me, but it's a shame it had to be at your expense.

I had the same back/shoulder but also chest pain, as you did, but no rash, then fetl better in a few days. 14 days later, there was a typical, small shingles rash on my breast. That's when I got the really bad pain over the next week. This group has been a life-saver (almost literally) for me. There's not much good info out there and this is one of the best in depth sources I've found.

I'm also on Gabapentin, which helps with the pain, and is commonly prescribed, but each case is different and you did get the antivirals. It's similar to the Lyrica others are on. Personally, I also use extra strength Tylenol. It does help me, but I don't often see it mentioned. And Lidocaine pain cream on the nerve area (you may want to look at an anatomy diagram to find it). I gave up wearing a bra 3 months ago, even a tight camisole can cause discomfort. I don't have a rash under my arm, so I can't help you. All you can do is try and see what happens I guess.

YES rest, sleep, doze, put your feet up!! Your body is being assaulted by a virus which is in your nerves, and rest is one of the best things to help with it. I was really surprised how healing it can be. My symptoms of both the meds and the pain are much worse if I push myself too much. It's NOT babying yourself, it's a necessary part of the regimen for getting your health back. I'm still learning that.

Also, the illness can cause depression,not just because of the obvious pain, change in your life etc, it seems to be a part of the disease, only God knows why we get that also LOL! You may feel a bit like Job. Also, basic but true, "if it hurts, don't do it!" I learned that from my doctor, a pain doctor and people here. If it's in the back, leaning (like looking in the mirror to put on make-up) lifting and bending make it much worse. The pain may be so diffuse right now that you can't tell, but see if it does trigger it. Also, for me, there's a delayed reaction--I don't immediately feel it when I lift something too heavy but about 10-90 seconds later I realize. Maybe it's the meds. Also, sitting and typing is tough, hence I'm signing off.

13

Mynxie

Please do not use deodorant under your arm...you may surprise yourself and discover you do not need it after all these years!. It will burn terribly...

Please purchase an over the counter OTC

topical Lidocaine or Benzocaine Cream of the highest percentage available (ask the pharmacist) to apply to the area. This will soothe the nerve endings. Do not buy gel as it contains alcohol.

Please continue resting, as any movement causession those shocks of pain.

Best Wishes

Merry Juliana

14

Thanks Merry, I'll follow your advice. I think I'll try a coolish bath tonight as I can't bear the thought of the shower hitting it - it seems to be spreading and is now across my back, right round my armpit and right down the underside of my arm with tingling starting on my thumb...

Why is it so much more painful sitting on the sofa rather than lying in bed I wonder, and you're right, every time I move it hurts. This is not a nice infection is it? 

I cannot understand how anyone can put up with years of this pain especially in your ears or on your face, you must be extremely brave! 

Thank you for taking the time to write to me, especially as I know it hurts you to do so. 

Best wishes

Mynxie Lyn

 

15

Hi Mynxie,

If you're having a bath, oats may help. Put some oats in a muslin bag - or anything that will substitute - tights or a sock - a let it run under the tap as you fill the bath.

I know what you mean about the shower. I only have a shower and my rash, mild as it was, was sensitive to the pressure of the water. It helps to deflect it.

I made a mixture of colloidal oats in coconut oil, a little olive oil, and a few drops of lavendar oil to use on my rash after a shower. It certainly helped. I'm sure I've got the recipe somewhere, which I can post if you think it might be helpful.

David

16

Mynxie,

The good thing is I can help wonderful people like you through my own experience!

I learned to view life as an adventure with blips in the radar...I learned to thrive instead of being the "victim" or "survivor."

A sense of humor helps tremendously.

I know how agonizing the pain is. I am 65 and realized when I had Breast Cancer, I didn't need deodorant anymore. The hormones dry up as we age...lol

Merry Juliana

17

David

What a fantastic idea...I would love the recipe! For other shingles patients and eczema!

Merry Juliana

18

Yes please, I'd love the recipe. I'm open to any advice at the moment and it's so valuable to be able to talk to people who know what it's like having this horrible 'thing' As far as I'm concerned it can go back where it came from as soon as it likes, preferably sooner!

19

Yes, I think the same as you (though it's obviously easy for me to say when I'm less than a week in!) whatever doesn't kill you makes you stronger as they say.....

only trouble with that is that if I don't admit how painful it is to my nearest and dearest I think they'll expect me to be as 'normal' and not rest 24/7 as I feel I need to do just at the moment!

Mynxie

20

I quite agree with admitting the pain is excruciating. It felt like I was being electrocuted through my ear canal to the center of my brain while giving birth via my ear canal. I literally wanted to cut out my inner ear..a la Vincent Van Gothic!

Merry Juliana