unrelenting pain with post Herpetic neuralgia

[WHL67]

Recently I was diagnosed with GCA back in August I now have shingles diagnosed within the last 4 weeks. Does anybody know of any pain relief or anything that would help as doctors seem clueless!!!

[PMRpro Ambassador]

They are clueless simply because dealing with neuralgic pain is extremely difficult. It is the main reason for the vaccine being recommended as it reduces the risk and duration of post herpetic neuralgia.

Although the evidence is mixed, there is some evidence that GCA-dose level pred helps the pain somewhat.

This

aafp.org/pubs/afp/issues/20...

suggests opioid pain relief is required - and we all know how reluctant they are to use them these days! The last bit of the summary at the start does make some suggestions.

Wlll they not try gabapentin or pregabalin?

[DorsetLady PMRGCAuk volunteer]

GPs should have prescribed antiviral meds -but that’s a bit late now -most effective within 7 days.

Couple of links re shingles - from FAQs-

nhs.uk/conditions/shingles/

healthunlocked.com/pmrgcauk...

[MrsPractical in reply to DorsetLady]

I have heard of a couple of people who have had relief from pain from shingles by using a tens machine.

[DorsetLady PMRGCAuk volunteer in reply to MrsPractical]

That makes sense….

[Griggser]

Hi, I developed PHN after getting shingles in my eye back in March 2021. I tried all sorts of creams which didn’t really help. I had a nerve block injection which helped for 24/36hrs. Lidocaine patches gave some relief initially and even a cold flannel helped. It wasn’t until I got a combination of Amitripyline and Pregablin did I get any real relief. Even taking these I still get fail episode of nerve pain/itching but at least it’s giving me some respite.

I hope you find something that helps you.

[MiniSpec]

I found when I had GCA that paracetomol did nothing, but paracetomol with codeine did help a little. So now, when my back gets really painful (I still have PMR) I take the strongest paracetomol with codeine tablet I can get, which is Solpadeine Max.

Those tablets have 500mg of paracetomol and 12.8mg of codeine each, and I usually find that one will alleviate the pain. However, there have been times when I've needed to take two at a time. According to the box, you can take up to 8 of them in a 24 hr period, and in the past I've been known to do that on occasion.

I realise that neuralgia is not the same as back pain, but it can be just as elusive when it comes to deciding what's causing it and how to treat it, as it isn't always obvious. So try the 'max tablets and see if one or two of them might give you some relief, but be aware that it also says on the box not to take them for more than 3 days on the trot, or you could become addicted.

Having said that, I've been taking them more or less every day for 13 years for my back pain, and now I find that I can go several days without any pain relief at all, so I don't think I've become addicted, but the manufacturers are obviously covering their backs by putting it on the boxes as a warning, i.e. caveat emptor.

[icu2]

this “ method” will depend upon where the shingles are appearing. mine occurred from my back across into under my breast. my only relief was to take ice wrapped in a thin cloth ( people suggest a cool compress …this was useless for me). i needed the freezing shock of ice next to skin. the first minute was excruciating and then….calm. seemed to shrink the nerve endings back to where they belonged. melting ice is an issue so lie on a towel. only in this way did i get some relief and then sleep. hope it helps.

[WHL67 in reply to icu2]

unfortunately mine are on top of my head 😫 so I tried ice packs on top they did help with the itching ever so slightly thankfully the itching has now well and truly gone so I’m just avoiding best I can not to touch endings and the scabs that haven’t dropped off yet. Thanks for your comments icu2

[Karenjaninaz]

I used analgesic cream with methyl salicylate and lidocaine. Benadryl helped itch and sleep. Yes,a cold patch is soothing.

I actual,y went to hospital in ambulance because the extreme pain was my breathing muscles and I am on oxygen. Even dilaudid( hydromorphone ) did nothing for nerve pain. It improved my mood for a very short period; so opiates don’t really work for nerve pain. . In ER they gave me Toradol (NSAID)IV which really helped. Neurontin and Pregalabin did not work for me but made me depressed. It’s trial and error because everyone is different.

I’ve heard of nerve blocks working for some.

(Retired nurse anesthetist here)

[WHL67 in reply to Karenjaninaz]

bloody hell I feel for you I can imagine the pain you must have been in having to go by ambulance. I still have some scabs left on back of my head which are so painful if touched by mistake. I think this disease is gonna take a long time to clear off !!!!!

[Karenjaninaz in reply to WHL67]

When I went by ambulance I only had awful pain and the rash was just starting in my back.,It was diagnosed in the ER when they shined a light on my skin. They gave me the antiviral right away and I never had the lesions just the itchy rash. The nerve pain made it hard for me to breathe.