Calling 111 with shingles.
Posted , 7 users are following.
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 likes, 73 replies
Dearheart77 Mynxie
Posted
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.
babs99203 Mynxie
Posted
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.
Thameslass Mynxie
Posted
Dear Mynxie,
I had shingles last June and you have all my sympathy.
(Mine was on my scalp and face so I didn't have problems with clothes, just with my long hair.)
I'm glad you got to see a doctor immediately, and I'm hoping the medication you've been given is gradually helping.
I found that being out in warm sunshine made things worse, but I think, with the weather we have in the UK at the moment, you should be OK. I'm just hoping I'll be able to enjoy being outside this summer.
The lump I had on my eyebrow lasted for several months (it seemed to have the effect of Botox on my forehead!), but it has at last gone down (and my face is now showing my age of 60 again).
If I ever feel the symptoms coming on again, I'll know to get to A&E straightaway rather than waiting for a few days.
I was fatigued for a *very* long time after the initial outbreak, so take care of yourself.
Best wishes,
Janice
babs99203 Thameslass
Posted
That's an interesting comment about the sun, I've heard that mentioned with cold-sores (also herpes) around the mouth too. I'm in the US and have wondered about a few of the abreviations used here. I know the UK has a different (and much better) healtcare system than us, but what is 111 and A&E? We have 911 for calling emergency services and the ER or ED or emergency room or emergency department. Sorry for the mini-hijacking here.
I also hope you're doing a bit better, or at least are past the worst of it. Sometimes it's hard to tell if there IS an improvement as it's so gradual.
davideastchurch babs99203
Posted
Hi Babs,
A&E (Accident & Emergency) is the UK equivalent of ER.
111 is the non-emergency NHS phone number (999 is the emergency number) where people can phone for free to get advice on medical matters.
Hope you're now well on the road to recovery!
David
davideastchurch
Posted
Dx
babs99203 davideastchurch
Posted
Thanks David, I am, but still with bumps along the way. That's one of the harder things to deal with; you feel better so you do more, and set yourself back. Still waiting to decrease the meds more, its been a month since I went from 800 mg X 3 to 800 once a day and 700 twice a day. But as I still had some rougher days this week, it was probably for the best.
Merry19451 Mynxie
Posted
Just dropping a note to see how you are today...
I know it is still difficult for you.
I have the recurrent Herpes Zoster-Shingles Oticus (Right Ear), ....but I have the medications, thank goodness.
Merry Juliana
Mynxie Merry19451
Posted
Hi everyone, and thanks for all the comments and replies. I've woken up this morning (after a heavy drugged sleep) feeling much better though I'm aware that it probably won't last for long! It's been a tough few days, unable to get comfortable, trying not to move and still in bed. I did intend to get up today even for a short while and the way I am at the moment I'm certainly going to try.
I wouldn't have gone straight to A and E in the beginning, but when I spoke to the doctor on 111 she said the nearest Out of hours doctor was located at the A and E dept of my local hospital (about 15 miles from where I live) I had to sit at the back of the room with others who were also waiting for the doctor rather than emergency care. I think they will only see you if you've been through the 111 system as I had to book in with a receptionist who was expecting me.
Our 999 service is brilliant but stretched to the limit and it really is only for serious accidents and real emergencies - 111 was more appropriate for shingles I think.
I think the anti antivirals are working in that the rash I had hasn't developed blisters (yet anyhow) and some that I could see coming up on the inside of my arm has gone away again but the deep nerve pain is still there. I have a day left of the av so will see what happens when they run out.
Im thinking of you all as I read your replies and hope you are all doing as well as you can, as has been said before I guess there will be good days and bad days and it feels like two steps forward and one step back, but hopefully most of us will get there in the end!
Lyn
davideastchurch Mynxie
Posted
I still have some post herpetic neuralgia from the last (mild) recurrence. I had to take the cat to the vet on Tuesday for his annual jabs and the PHN, which was diminishing, was definitely worse on Wednesday.
Your best guide is your own body: learn to listen to it! The moment you feel any discomfort, or you feel your energy drop, stop!
David
Merry19451 Mynxie
Posted
I am glad you see some prospect of recovery. Your description of two steps forward and step back is perfect, although, at times, the reverse is true LOL.
After a stormy day yesterday with the power out, the day is sunny with freezing temperatures, and power has been restored. Much more cheerful...
Best Wishes
Merry Juliana
babs99203 davideastchurch
Posted
Dear David, I disagree with your advice, your body lies!! LOL! Lyn, your body will "trick" you so you think, hey I'm beating this thing, let's try and push it even more!! No, do only a little bit more and enjoy feeling good. Then maybe the next day do a tiny bit more, enjoy feeling good, and repeat! Because heaven help me, I STILL can't stop over-doing it, 3 months in. The only good news is that you will still continue healing but not the way you think you should--if I could just get my brain/will-power and body on the same page we'd all be good.
Savor those little things such as, I could dry my hair today or it hurt less when i got dressed or even, I didn't cry today! Anyone else reading these posts would think we're crazy, but ya gotta find some humor in it all. My biggie was I realized it didn't hurt to floss my teeth last night. No, it's not the teeth, it's the back and the pressure. My next really big thing (David stop reading this) is when I can finally get a new cami/bra on that I bought. The girls DEFINITELY need to get back up to where they belong! It reminds me of back in '70s.
Glad you're feeling better today, a good rest helps a great deal.
Mynxie babs99203
Posted
Thanks Babs, it's sad that I can benefit from all the mistakes others have made on their way to recovery! There really should be a 'Shingles for Dummies' book in the series, I think there would be a good market for it out there.....
babs99203 Mynxie
Posted
I think we're used to injuries and illnesses going from A to B to C in a linear, uncomplicated fashion. That doesn't work with shingles. It's more like a big ball of tangled yarn (or someone else find a better analogy). Pull one thing you think will straighten it out, and it will mess up something else, but at the same time, there are areas that are getting much neater, but you don't notice them or appreciate them. My mantra (and I'm not a mantra/positive kind of person) is "I AM getting better", because it was so easy to lose track of those small areas of progress and get bogged down in what you can't do anymore. It really needs a sense or perspsective to see the big picture.
You're in that more acute phase, so it's harder to tease out the better stuff and your "normal life" is so fresh in your mind. It's not a sprint, this is a marathon, to throw out another anology.
Mynxie babs99203
Posted
babs99203 Mynxie
Posted
I think it's our psyche's way of protecting us, so we absorb bad news or change slowly (or just call it denial). I was a caregiver for my parents, when they were still fairly indpendent. Every call of some new crisis would first cause my brain to react "NO, I can't do this, I don't want to drop everything, it's not 'fair'!" As an adult and loving daughter, I'd feel guilty, then I learned to accept that's what my brain says, yet, I over-ride it and say, keep calm and carry on and deal with it.
As far as the shingles, it's OK to have a pity party, as time goes on they're fewer and further between and a lot shorter. AND you may have a much shorter duration than others. I never had the anti-virals, it was two weeks before it fully manifested itself.
Mynxie babs99203
Posted
Bless you Babs, you sound such a wise and lovely person.
its certainly come back with a vengeance now, it's almost 1.30am and the pain is keeping me from sleeping. I'm just waiting til I can take some more medication in half an hour. I'm having a great pity party right now and no matter how much I tell myself that others have it so much worse than me there's still that little devil inside me stamping its feet and saying 'it's not fair, why me?' At the moment it's feet are stamping right on my shoulder blade from the inside!
Goodwater_Betty Mynxie
Posted
Hope you are sleeping by now. I well remember those sleepless nights, the crying and pure agony. Luckily (maybe because I'd had the shingles shot several years ago), that stage only lasted a week or so for me. I was also lucky because I'm retired and could indulge myself and rest all that I need to without feeling as if I needed to press forward. As others have said, the most hopeful thing is knowing that it will get less intense over time if you take care of yourself.
babs99203 Mynxie
Posted
Nights were the worse, but after a few days of the gab, it was better. All I could do was pace and cry and try and get thru the next few seconds which became minutes which became hours. I'd try anything to take my mind off it. For me showers worked,I felt that any stimuli I could do to disrupt my brain helped. Also the 4% lidocaine pain cream along the nerve helped.
I'm not all that great, I just have a good memory and want to pay this forward. And guess what, right now IS really bad, one man's broken leg doesn't cure another's pneumonia--no guilty feelings, OK? Tomorrow can be better.
Mynxie babs99203
Posted
I did get to sleep in the end and like am retired so if I need to sleep today - which I will!- I can. I find it helpful to listen to a podcast called 'sleep with me'. It's just a guy rambling on about nothing much as is specially designed to send you to sleep. He describes what he can see from his window or long rambling stories that are meant to be very boring, but listening to them takes your mind off the pain or any worries you might have. I don't think I've got to the end of many of the episodes before sleeping.
davideastchurch babs99203
Posted
You are right Babs. We can easily be fooled into thinking, 'I'm OK now' and start doing too much. The problem is that I don't know of any other way to test where we are at than to do a little and see what happens.
My original bout of shingles, though relatively mild, was accompanied by awful depression and fatigue: I could literally feel my energy drain away and, as soon as it did, I would just sit down and rest a while.
Apart from feeling as though I've pulled a muscle in my side and sensitivity around the rash, I haven't had serious pain until this last bout. Now, although the rash is gone, I have PHN in my side, which isn't constant but stops me in my tracks from time to time. This is more like the sort of pain I've had previously from trapped nerves.
My problem is that I live alone, apart from a good friend who visits fairly regularly, so if I don't cook I don't eat. And if I don't do one or two little things around the place they don't get done. Nevertheless, I'm putting off a few bigger jobs, like planting a couple of trees that I ordered a while back and have now been delivered!
I agree with you entirely. But we only know that we can do the small things if we try them - and we may be able to do them today and not tomorrow. I think the bottom line is rest, rest, rest; avoid any strenuous exertion; and experiment with the little things with a great deal of care.
Merry19451 Mynxie
Posted
Hi Mynxie,
We haven't heard from you in awhile, and hope you are feeling better. Please drop us a line when you feel like it to let us know how you are doing.
Best regards,
Merry Juliana
Mynxie Merry19451
Posted
i was doing so well yesterday that I decided to give the painkillers a miss last night which proved to be a mistake! I woke at 3 in pain but it was too late to take the amitriptyline so took a co codamol instead, so bleary again today. I have been out this morning, first time for 2 weeks, and though tired I do feel better for it
How are you doing?
best wishes
Lyn
Goodwater_Betty Mynxie
Posted
babs99203 Mynxie
Posted
Just because you have a good day (or bad day) don't put too much into that. It's when you can start to string several in a row you can make changes. Honestly, it's a bit early for that. Enjoy the good days, but still take it easy. I started the Gab in mid November, and I'm just now starting to cut back by 100 mg a day. However, I'll wait untnil I have 3 or 4 good days in a row before I cut back again (under my doctor's supervison). I'm more uncomfortable since I did that, but it's tolerable.
Mynxie babs99203
Posted
Yes, it's so unpredictable isn't it? After a good I should day yesterday I had a horrible night again and ended up taking the mex painkillers I could which have left me sleeping in till gone 10 this morning and very woozy. Science seeing the doctor at the beginning for diagnosis I haven't seen one since- is it a good idea to keep in touch? I think I'm scared of becoming addicted to the painkillers.
babs99203 Mynxie
Posted
Despite working in healthcare for 30 years and and the fact that I despise going to doctors I'm relying on my doctor and pharmacist to monitor this for me. I don't know how your healthcare system works, but I have a main doctor and at the worst, I talked to his nurse every week, sometimes more to see how I was doing. I haven't BEEN to a doctor since he diagnosed it, but I rely on them to adust my meds and for support. I personally don't take opioids, but for short-term like this it can help. They need to be used properly. I'm not sure which of your drugs (names vary here in the US) are possibly addictive, but you need to control the pain as best you can with both nerve medication such as Gab or Lyrica and other medication. Pain can be a vicious cycle, and keeping it to a minimum or at least to a tolerable level is very important for recovery.
Even now, I keep asking why do I feel this way? What can I do to change it? It's maddening. There's no blame game here, but see if there are things you're unknowingly doing that make it worse. I'm STILL figuring out ways to move or dress to minimize discomfort. Mine's on my back and chest so certain motions or clothes make a difference. I have forced myself NOT not to sit too long (thanks Merry) as it definitely makes it worse. I thought I could FINALLY wear a cami-bra, but alas, I feel those little demons starting to use their pitchforks on me, so it's back to plain, lose camis.
I'd make a list of tiny pieces of progress, to prove to myself I was improving. You may still be so acute that you can't, but it WILL happen, I'm proof of it! Rest, be patient and stay as comfortable as you can. It is only temporary--This Too Shall Pass.
Merry19451 babs99203
Posted
You are spot on...You do not have to worry about getting addicted, if you are worried about getting addicted...You are doing more harm by not achieving excellent pain control now
BTW, Babs, I stopped wearing a bra at home after my partial mastectomy 1-1/2 year ago. I am way too tender....LOL
BEST REGARDS TO YOU BOTH
Merry Juliana
davideastchurch Merry19451
Posted
On the subject of addiction, in a similar vein, I've been wondering about stopping amitriptyline. I haven't been on it for very long (just over two weeks so far), but my PHN is decreasing significantly and I'm wondering when to stop. I read that you shouldn't just stop taking it although I imagine that they're probably talking about having been on it for a longer term. Is it ok to just stop or should I be talking to my GP?
Merry19451 davideastchurch
Posted
Hi David,
How many mg are you on? It is wise to taper down, of course. I would definitely speak with your physician regarding when and how to stop it. You really don't know for certain how well the drug is helping you, either...Just a thought....
Hope you are doing well, thinking of your newest granddaughter and daughter!
Merry Juliana
davideastchurch Merry19451
Posted
Hi Merry,
I'm on 25mg. You confirm what I've been thinking. I'll speak to my doctor.
Mum and baby are doing well thanks. I'm down visiting at the moment.
David
babs99203 davideastchurch
Posted
I'm starting to reduce my Gab, but it's only been a 100 mg/day decrease and I can tell I'm more uncomfortable, but I'll accept that. I think most of the drugs such as Gab/Lyrica or anti-depressants have to be slowly increased and slowly decreased, particularly the nerve meds. It will take me weeks to get off it, but I'm not well enough either to decrease it too much.
Merry19451 davideastchurch
Posted
Good to hear Mum and baby are well
The 25 mg dose is very low. It will not be difficult to titrate down for you.
Best wishes
Merry Juliana
Merry19451 babs99203
Posted
Babs,
Don't rush it, as you need to heal first. If you find yourself thinking about the pain all day and/or all night long, you are rushing the tapering process. I used to do this for patients.
I take Topamax routinely as I don't dare not take it. Remember, I have episodes every three to five weeks... Topamax doesn't seem to bother me cognitively, however. The other medications certainly have stronger adverse reactions.
Best regards
Merry Juliana
babs99203 Merry19451
Posted
That's good advice for everyone, thanks Merry. I realized this yesterday. I had every intention of dropping down again on Monday, but realized, like I tell others (duh!) you need to see a real improvement that lasts, before you can do that. It may take another week, but I should cut your comments our and tape them to my mirror (or forehead).
Mynxie, I hope you're having a better day and David, congrats.