Shingles pain

[FinneUK]

I've had shingles with continuing pain. Wounds like a burn and a scratch are taking ages to heal. I am older, 66, and I know this can happen. Any suggestions for tests I could ask for and is there any point asking for them.

Best wishes

Fiona

[helvella Administrator Thyroid UK]

Much sympathy from here.

The blistering sores can take a long time to heal - how long has it been for you so far?

Difficult to remember exact time but about a week in, the affected area looked horrible and GP prescribed an antibiotic because it was becoming infected.

I found the pain horrible and was prescribed Zapain (co-codamol). I also used various benzocaine and lidocaine creams. (When my doctor prescribed, the only cream she could find to prescribe was Vagisil - which caused a laugh in the pharmacy.)

I found after a while that sleep was a major problem. Couldn't get to sleep, kept waking up, staying awake for ages. The pain and general discomfort was horrible. Eventually I accepted some low dose amitriptyline. While it helped, I didn't like that it made me so incredibly tired - sleeping about three hours more than usual. And dry mouth.

As the initial issues faded, I did continue to get lots of pain in the area. When the skin had healed, I looked further and found that one of the options was capsaicin cream. (The other options were the heavy-duty painkillers that I really didn't want top go near.) My GP initially prescribed this for me.

Have now been using capsaicin for almost two years and, for me, it is miraculous. However, your GP will be unlikely to be able to prescribe it as the only product licensed in the UK Teva Axaain 0.075%) will be unavailable until at least 2025. If you want to consider capsaicin, I suggest you contact me by Private Message. (Simply because it is off-topic for the forum.) I manage to buy my own from abroad and will be happy to let you know more.

I can't think of any tests relevant to shingles. Just the usual ones to make sure you are not suffering anything else, your thyroid levels are OK, etc.

[FinneUK in reply to helvella]

Thanks for sharing your journey with this. Mine started 4 weeks ago with severe pain and numbness feeling like it was mainly deep in the hip and lower back pain moving around a bit. It wasn't recognised as shingles but doctor thought musculoskeletal. I was ringing 111 a lot almost wanting to die at times. The physio and osteopath said I'd burnt my back with a hot water bottle (I thought I had too but now wonder) and that I had an ice burn on my hip(shingles rash). I had co-codamol and ibuprofen but still in a lot of pain, then naproxen then tried to reduce back onto ibuprofen, then back to Naproxen as ibuprofen didn't work and I read long term it wasn't much worse than ibuprofen. Now paracetamol which I feel is a big improvement but I have pain waking me at night or early - it's still a bit up and down and I am still numb. I heard about amitriptyline but I don't know which is worse naproxen + omeprazole or amitriptyline and meanwhile I'm hoping things don't get too bad I have to consider this.

The cream sounds good. I still have a fairly open sore on my back so that's probably not where I should be putting it yet. Also the pain feels very deep although I have numbness sensitivity tingly pain on the skin surface too.

The tests idea was because I have had a spate of low immunity in my opinion - chest infection followed by this shingles.

I'm am due to get a thyroid test straight away.

Best wishes and thanks again - it's good to share.

If you get this with no rash - CONSIDER SHINGLES - because the type that starts like this just with bad pain is more prone to have persisting pain - I read this somewhere perhaps NHS website. You can get antiviral drug if it's diagnosed early enough.

[FinneUK in reply to helvella]

I don't know how to do a private message

[RedApple Administrator in reply to FinneUK]

FinneUK, the member you are replying to, has a little round picture next to member name. Click on that picture, which will take you to the member profile page.

On that page, you should see a blue button CHAT. Where that button is, depends on the device you are using. But it will probably be at the top of the profile page somewhere.

[helvella Administrator Thyroid UK in reply to RedApple]

Thanks - your instructions were sufficient! I got a PM.

[Blissful]

I haven't had it myself, but you have my sympathy because I've witnessed it close hand.

One of the things automatically recommended by the pharmacies here is to use Vit B1, Vit B6 and Vit B12.

Damage and regeneration naturally occur in the peripheral nervous system. The neurotropic B vitamins thiamine (B1), pyridoxine (B6), and cobalamin (B12) are key players, which maintain the neuronal viability in different ways. Firstly, they constantly protect nerves against damaging environmental influences. While vitamin B1 acts as a site-directed antioxidant, vitamin B6 balances nerve metabolism, and vitamin B12 maintains myelin sheaths. However, nerve injury occurs at times, because of an imbalance between protective factors and accumulating stress and noxae. This will result in the so-called Wallerian degeneration process. The presence of vitamins B1, B6, and B12 paves the way out to the following important regeneration by supporting the development of new cell structures. Furthermore, vitamin B1 facilitates the usage of carbohydrates for energy production, whereas vitamin B12 promotes nerve cell survival and remyelination. Absence of these vitamins will favor permanent nerve degeneration and pain, eventually leading to peripheral neuropathy.

ncbi.nlm.nih.gov/pmc/articl...

Apart from the above, I would definitely recommend you use Aloe Vera, it's an amazing medicinal plant. I'm in Greece and grow it outside but I know many people in the UK who grow it successfully in pots. If you have a fresh leaf that would be preferable but there are many ready made products now - try and find the best quality possible.

Another topical remedy might be a mix of quality distilled essential oils, particularly including Blue Chamomile. Just in case you are not familiar, probably with the exception of Lavender, all essential oils need to be used with a carrier oil e.g. almond oil.

[EMBoy]

Under the new regulations, pharmacists are allowed to prescribe for shingles. Perhaps your local pharmacist could help.

[FinneUK in reply to EMBoy]

Wish I'd known in time. Doc said it was too late.

[userotc in reply to FinneUK]

Assuming youre referring to the acyclovir drug that you missed out on, it may not have helped anyhow so dont be too frustrated. My mum took it as her shingles was diagnosed early but she still had 7 weeks of incessant pain! The medics may say it prevented PHN development but we'll never know.

[PurpleNails Administrator in reply to userotc]

PHN in case others are unfamiliar

“Post-herpetic neuralgia” it is a lasting pain in the areas of your skin where you had shingles.

nhs.uk/conditions/post-herp...