Anyone had Shingles followed by post-herpetic neuralgia?

[bigbluebus]

DD (who is disabled, has severe cognitive impairment and no communication)had Shingles starting in Sept, which dragged on and needed 2 lots of oral anti-virals over a period of a month followed by a course of antiviral cream to get rid of the rash. She seemed to be completely over it, but last week seemed to have some level of discomfort when her right leg was moved (she is immobile and needs hoisting from bed/chair). The pain didn't seem to get any better or worse until last night, when she became very distressed when moved around and it seemed to be linked to her leg. Having spent 4 hrs in A&E today getting her leg x-rayed they have confirmed that there does not seem to be anything wrong with her leg and said we could go home.

SHe seems to be suffering from spasms of pain periodically, although there are no obvious signs that she is ill. Temp, BP and O2 levels all normal, no vomitting

Since getting home, I started wondering if these intense spasms of pain could be as a result of her Shingles clutching at straws as it is like looking for a needle in a haystack The Shingles rash was on her back on the left side and did cause her some pain for a couple of weeks whilst the rash was there, but that was over a month ago.

So, those of you who have had Shingles and post herpectic neuralgia,(or any Doctors who know about this) what was the pain like? Did it come on straight away after the Shingles rash disappeared or was there a delay. Did the pain come on gradually and then get worse, or was it just a sudden onset of pain.
Any info gratefully received. Thanks

So sorry your daughter is suffering .
Sounds as though you both have enough to cope with as it is .

My mother has this post hepatic thingy - yes I believe there was a delay before she developed it .

I think ( not 100% sure ) that her area of pain is pretty much related to site of orginal rash and I also think that evntually it was marked by a red area

She was very troubled with the pain and as far as I understand it was set off by being jolted in the car ,clothing touching it ,or just suddenly came on for no reason .
So spasms of pain would be right .

She used descriptions like being suddenly squeezed by red hot scissors ,stabbed by red hot needles .
I think there was also a constant residual pain ,she took paracetomal for that .

The only thing that helped her was capiscum cream
www.mayoclinic.com/health/drug-information/DR600303
full strength on prescrip ,not over counter .
You have to apply a pin head blob near the affected area 4 times daily and the pain ,over time ,gradually lessens .

You can also get lidocaine patches .

How dreadful for you trying to work out what it could be . And 4 hours in A&E ,couldn't they see her any sooner ?

Couldn't be muscular could it ?

Thanks for that Ginger. It does sound like a possibility that DD has this, from what you have described. The pain does come on suddenly and then subsides again. I will investigate the site where her rash was when she is lying on the bed and see if I can track the pain to that area.

I'm afraid we've had a life-long guessing game with DD - it's a bit like playing detective - looking for clues all the time. I am the one who knows DD best, but have to pass on the clues to the medical professionals to try and solve the case. Unfortunately our GP who knows DD well is on holiday this week.

4 hours was the total time we were in A&E. I would say we were 'triaged' pretty quickly and given a cubicle and trolley straight after that. But we then had to be seen by a doctor, then wait to be x-rayed, and then wait for orthopaedic team to look at x-rays and then come and see her, as she had fractured her legs last year so the xrays were not easily readable by the A&E doctor, due to previous scarring. I can't believe how busy they were - we got there just after 9.00am and by 11.00am they said they were full - and that's in the daytime when GP's Surgeries are open!

Sounds like you're doing a great job bigblue.

I know what you mean about knowing someone well and trying to intepret what is wrong and convey it to HP's .
My mum is in her 90's and has always been odd .

The challenge over the last few weeks is to unpick why she thinks tinned soup is driving her mad .
I think the answer may be some temporary confusion possibly linked to urinary infection and not a residual belief that metal from a tin is poisioning her mind .