Help! I'm 23 and have such bad nerve pain that I barely do anything.

[Sophiegalpin]

Hello,

I have just been diagnosed after 4 yrs of tests and numerous specialists with postherpetic neuralgia. I have constant nerve pain in both of my legs - they feel like they are constantly in spasm, I have fasciculations in my thighs constantly and my legs are so sensitive I cannot wear jeans, tights or leggings as any form on pressure makes the pain soar. Is anyone else going through this? I have tried gabapentin, duloxetine, pregabalin and amytriptoline but nothing touches it. Does anyone have any recommendations of what to do next? Like good medication combinations?

Thanks xxxxx

[Shemadee]

I have similar nerve pain caused by vulva surgery for Pagets Disease. I am currently taking Palexia SR a fairly new drug that isn't often available from GPs. It normally has to be prescribed by a pain clinic. I also use Versatis patches - lidocaine which helps as well. These are also expensive but do make a difference if you can persuade your doctor! They ease the electric shock type feeling for a few hours which at least gives me a break. There is also quite a lot of info on pudendalhope.info Not quite the same problem but a lot of info is useful. Hope you find some help with the pain. I've tried all the same as you and just end up feeling sick and ill and still have the pain.

[Hidden]

I have a similar problem with my left leg/foot it took 2 years to diagnose RSD now its 12 years on and numerous drugs later .

The regime I'm on at the moment lets me cope I still cant war a shoe or anything tight or heavy on my leg nor have I been able to ditch the wheelchair .

Ask your Gp about BACLOFEN this is a muscle relaxant that helps with the spasm type feelings I also take pregabalin and amytriptoline but you,ve tried those the other drugs I take you cant get from your gp they are from the pain clinic which you should be attending by the way ask to be refered if you are'nt already .

Anyway look into Ketamin and Sativex I find them a great help

Hope this has been of some use

[littlebear]

Hi Sophiegalpin,

Sorry to hear your story. I am 35 and have (probable) two lots of postherpetic neuralgia. I had shingles in 2004 (aged 27), with only 2 blisters, followed by PHN. It died down after 18 months (on amitriptyline), only to flare up again, along with additional possible shingles without rash (in new location) in 2009. I'm currently on pregabalin with low dose duloxetine prescribed by a neurologist and so far this is the best combination I've found. I'm hypersensitive to cold temperatures, viruses, air movement, wind and fans. My pain is mostly deep with surface pain being transient. I wear two uni qlo heat tech (thermal) layers under my clothes to protect me from the air movement and cold air. Sorry I can't be more help.

However I've joined a couple of support groups on Facebook (they're closed groups so comments are private but anyone can join them), they are "Postherpetic Neuralgia (PHN)/ Chronic Neuralgia Support Group" and "Post Herpetic Neuralgia". Everyone's very friendly.

[Hidden]

All I can advis is use a tens as a nerve block, you will need a phsio to show how you can apply it, also a v tens could act as a EMS and give tone

You will need to keep changing modulations and use it over a period of three hours instead of say one hour as recommended by pain control this may help Although I would talk to your gp phsio or pain clinic about this. Also you can use large jell pads they will prevent you from getting the sunburn effect from the pads,that need to be coated in jell.

Some companies like Body Clock now sell mains adapters for there tens they prevent the expense of batteries and again preventsburning from pads as the the batteries do as they go flat. Hope this helps good luck and keep the faith

[Bluejay]

I have a similar complaint which is nerve damage and I was left for 5 five years on the wrong medication with the consultant only giving me epidural injections. Hence I deteriorated physically. But after getting a new consultant I was eventually put on Nortriptyline and built up very gradually. After a few months I noticed a difference in the amount of severe pain I was getting and found that I was more able to move around more easily. I then went on a Pain Management programme which was excellent and made a great deal of difference. It is very painful in the beginning because your are using muscles that you haven't used for a long time but it really was worth it! My walking, though had not greatly improved and I then went to a podiatrist who gave me specially made for me, insoles. At last I could start walking more easily!

But I am not 100 per cent and I still get bad days every week and bad patches but all the above was worth it as life is more bearable and I can do more for myself now. Maybe one or some of the above may help but I do hope you are able to find some relief some how. All the best.

[charlie_red]

Hey! I'm 23 too and in constant pain as well .. I've tried so many painkillers - Gabapentin, Dihydracodiene, Tramadol, Morphine ... They have diagnosed Fibro and severe chronic pain. I have tried the TENS which is really good and massage helps me too.

I still find it so hard to cope and I'm in the middle of trying to find a combination of medications that work.

C x

[StevenSims]

Hi, I have tried lots of meds and the only thing that works for me is Amitriptyline or Magnesium Chloride flakes in a bath.

All the best

Steve