Postherpetic neuralgia from Shingles

[geniveve27]

I am 75 and I have Postherpetic neuralgia from Shingles, which I had on my perineum. It has now been over one year and I am feeling really low. There is nothing the doctors seem to be able to do as they say there is no other treatment and it has to take its course. I am on 200mg per day Pregabalin reduced from 450mg. But now there seems to reduction in pain. I have read of an Intercostal nerve block but 1: I don't know if it can be done here in UK? 2: or if it can be done in the place where I have it? I think I am losing my life because of this excruciating pain. If any one can give me any advice or help I would appreciate it. Thanks

[Konagirl60]

That must be very painful. Do you feel a burning sensation?

If nerves are bothered why don’t you try Amytriptyline or Nortriptyline?

I hope you get answers and this disappears.

[geniveve27 in reply to Konagirl60]

Yes it is a burning sensation on the skin, but also like nerve shocks on the skin as well. I have tried Amytriptyline and it made me feel so weird, and my life just stopped, I had to stop taking them. There doesnt seem anything that helps. I have also tried Lidocaine cream which is an anaesthetic, but that doesnt help either.

[Konagirl60 in reply to geniveve27]

Have you tried capsicum cream or capsicum pain patches?

[geniveve27 in reply to Konagirl60]

Im not actually sure, I have tried so many creams. I would not be able to put patches on that area though. I will have a think and look at what creams I have got. Thanks

[geniveve27 in reply to Konagirl60]

This is the one with chilli (peppers) in it. If it is yes I did, and the burning was so bad I was screaming and crying, I couldn't wash it off quick enough. Let me know if that is the one I am thinking of.

[Konagirl60 in reply to geniveve27]

Yes, however if it burned then it didn’t help with redistributing your nerve pain signals. Too bad.

Good luck at the doctor.

[Minnie20]

Hello Genevieve. I am so sympathetic

I too have pain after a bout of shingles. I dont know if it is considered post herpatic as I started the shingles started a month ago. The pain in the first days was horrendous and I feel for you . The dr said this possibly might go on for the rest of my life which was terrible to hear. She gave me 10 mg of Amitriptyline which she told me was the gold standard for nerve pain and I have been on it for two weeks. The pain has mostly gone and it is very livable with.

There are side effects with Amytripline which to date haven't suffered with. 10 mg is a very low dose. The nerve pain from shingles is a pain that you wouldn't wish on anyone.

[geniveve27 in reply to Minnie20]

I was unable to take amitriptyline as it made me feel so weird. Did the Amitriptyline made you feel sleepy all the time? My doctor hasn't said anything about it not going away but I feel is it is with me forever and I cannot do the things I used to anymore. Yours seems to be getting much better.

[Minnie20 in reply to geniveve27]

I have taken Amitriptyline for 2 weeks. Fairly quickly it took a good deal of the pain away. I was a bit dizzy for a day or so. That's gone. It doesn't make me sleepy. I take it around 10pm. My sleep pattern is very similar to previously. I am retired so I have a lie in till 10 most days. Due to my age the things I am most worried about are weight gain, eye pressure and palpitations. I dont have any health problems. But it is early days for me. The dr told me I could stop taking it when I wanted.

[geniveve27 in reply to Minnie20]

When I tried it I took mine at 7pm and I was out of it all the next day. Took it for 5 days and then gave up. I tried it again while in this lock down as wasn't going anywhere and the same thing happened. So it obviously does something different for me. Shame as I think that would be the thing for nerves. I have to say weight gain is a problem as Pregabalin causes weight gain and its difficult to lose it.

[Konagirl60 in reply to geniveve27]

Have you tried Nortriptyline?

[geniveve27 in reply to Konagirl60]

No I haven't, I will ask for it. Thanks

[rosewine]

What an awful place to have shingles. I've had it three times in different places on my body. When I had in around my rib cage the pain just wouldn't go away. Pregablin has helped with the burning, shooting pains but a bit like you with Amytriptyline if I have more than a low dose I just want to sit round and it makes me too spaced out. They would probably prescribe lidocaine patches but even though you can cut them to whatever size you want it would be an awkward area to put them on. Slowly I have learnt to live with it more but you have my heartfelt sympathy. I would enquire about the nerve block.x

[geniveve27 in reply to rosewine]

Thank you for you message. I have sent asking about nerve blocks from 2 hospitals.

[greatdaneatairport]

Buy a TENS machine, Geniveve. It helped me for a while. Also Targin, a long-lasting painkiller. That’s a Brand name but your doctor could look it up. On prescription only.

[geniveve27 in reply to greatdaneatairport]

Thank you so much for your message. I will investigate what you suggest. Although because I have back injections every year for a car accident I had some years ago, I thought I would write to my Pain Consultant to see if there was some procedure for nerve shocks. And evidently, there is. In my case, it is called Pudendal nerve block. I was due to have it at end of January but my Pain Consultant was called onto the Covid wards. So I now have to wait longer for it.

Best Wishes

[kjmn]

dear Genevene. Was it only on the perennium or in, or near the back passage? and genital area? and what symptoms do you have? so did you have blisters over the perennium itself? I will be most grateful if you can answer. Only my heart felt best wishes from Margaret

[geniveve27]

The blisters were on the left side of the perennium and they went up the back to the side of back passage. They were very sore and painful. I had these nerve shocks which were like I would imagine an electric shock. The blisters healed eventually but left with the shocks which have lasted nearly 2 years now. But I went to my doctor in June 2020 as I had seen an article on the internet about a nerve block injection that could help. My doctor was useless and did not even I am sure research it. As I have back injections regularly for an accident I had some years ago I went straight to my consultant by letter and asked him. He put me on his list for a nerve block injection last December. Unfortunately because of Covid all procedures have been delayed. Now mine till June. I had enough so I have had to find the money and go private. I am having my nerve block on Thursday of this week and I am hoping it is going to give me release from this dreadful pain. Was there a reason why you asked me this as I would be interested to know?

[kjmn]

Dear Geniveve. would you kindly discribe your symptoms, what is bothering you and in which area you have pain? This is so very very important to me I have not had contact with anybody who have been affected where I was. My shingle started 9 months ago and after all blisters disappeared this" phn "started. it is frightening and I feel and I don't know what to do. it will tremendously help me if you could describe your symptoms. I will be ever so grateful are you a reply with my warmest best wishes Margaret

[geniveve27]

Hello Margaret, I am sorry to hear about your PHN. My blisters were on the left of my perineum and they disappeared leaving me with PHN. Sort of nerve shocks, causing the skin to feel burnt but there was no sign of any change in the way the skin looked, it was perfectly normal. It is hard to describe the pain only that I would be sitting and all of a sudden there would be shooting pain in the nerves. I have been on pregabalin since May 2019. It was painful when I coughed, sneezed, laughed, cried. I had to were very loose clothing. I have today had a ganglion block injection and an epidural in the lower back. It could take two weeks to take effect. So message me in two weeks to see how it goes, then you could contact your doctor and ask her to refer you to your nearest pain clinic. There is not more I can say, except, keep the area cool, ice pack help short term. Coffee enhances the nerves, so try to not drink it. Look up what food and drink causes nerve pain in Google. I wish you all the best and hope you return to full health soon.

[Tica2]

In my case - going on 14 mos with excruciatingly painful PHN. Some days - nerves feel as if they are on fire. On other days - they feel like someone has tightly constricted a cable around my gut and abdomen. Treatments: Large doses of opioids and methadone, Lyrica, multiple epidurals, Lidocane patches, tricyclic antidepressants, and ultimately - surgical implantation of a neurostimulator in my lower back to address DRG and CRPS 1 & 2. I have seen renowned pain management specialists in a major university health care setting. Despite all the medical dog and pony shows, none of it - nothing at all - has worked unless I medicated myself to the extent I could not function. So I live with constant searing pain - I still work full time and just steel myself every morning to tolerate it.

[geniveve27 in reply to Tica2]

Sorry to hear of your experience, looks like you have tried more than me. Didn't know half of that was out there. I have 2 weeks ago had an injection in my Pudendal Nerve as my pain is on my perineum. If anything it has minutely reduced the pain, but not to the extent where I can wear my normal trousers, everything has to be baggy. It is still so painful.

[Defenders]

I’m in same boat as you! Shingles started 14/12 last year, on left side of my back, going round under my arm to mid front. It’s still painful to sit as leaning on my back is really bad. The Chinese trained acupuncturist says she can help with nerve endings, but I’m just so wary of making it worse. I’m so sorry you are suffering too. I feel it has aged me and there’s no going back. I’m 77, I’m taking nerve supplements TAURUNE, B1 THIAMINE, B12, and RIBOFLAVIN. It’s the Myelin Sheath that gets damaged in Shingles, so I’m trying to mend it. Good luck in your recovery ❤️‍🩹. If you find something that helps, please let me know. Isobel xx