Unbearable Full Body Pain. Please Help :(

[angelwin]

Hi all,

First post here, long story short.... I have a rare neuro issues called ACNES. Acute cutaneous nerve entrapment.

Essentially, my cutaneous nerve in my abdominal wall got caught and trapped resulting in severe abdominal pain. I had all manner of ultrasounds, endoscopes and colonscope (sigmoidoscopy?). Very stressed.

Anyway, I have gastritis and esophagitis too and severe gastro issues while taking high dose PPI for approx, 7 years after a severe infection. (all the antibiotics and steroids caused what seems perm gastro damage).

Anyway, because my trapped nerve thing wasn't properly helped, I only got the nerve block last month after FIVE years of constant pain, replying on cocodamol and lidocaine patches which done nothing really.

I have IBS too and allergies. BUT I now have periodic flares of SEVERE full body pain that starts with the legs twitch, burn, go into spasms. I have breathlessness, no sleep often, then sleeping too much to compensate. The pain is now coming out my arms and feels like its taking over, chest pain too. I finally got tramadol. Also, pregabalin? But is this even safe to take. 50mg 4x a day tramadol and 25mg 2x a day pregabalin. I feel awful. Pain still bad

Depressed too, doc tried me on duloxetine but got SEVERE side effects. I feel very spaced out and ill.

Please help.

[cyberbarn]

Hi Angelwin,

Nerve pain is horrible! But you know that already.

Sometimes when pain is not controlled properly for a long time, the brain can go overboard and start to feel the pain differently. It is called central sensitisation. Has anyone ever mentioned that to you?

There are drugs that can help with nerve pain, other than duloxetine. My son tried that but he didn't get on with it, but he has had good success with amitriptilyne. Not all drugs suit all people. And at low doses these don't work as an anti-depressant, but they do work on nerve pain.

How long have you been on the pregabalin? It can take a couple of weeks to settle down, but if it doesn't work go back and ask for something different.

It isn't surprising that you are depressed, it is hard dealing with pain like this, but if they can control the pain, then hopefully your depression will start to lift a bit.

Hang in there, keep trying out things and hopefully one will work for you.

[Hidden]

Hi.

Would injections work for you,I'm trying that next, if they help one part if me it would be good as u usually get an hour or less sleep per night!! Good luck. Love and hugs Lynne xxxx

[Stillsmiling_Just]

Hi Anglewin,

I'm sorry to hear you have been in so much pain. I have had acnes for about three years now and I have really struggled to get help on the NHS. I hope you are having a better time of it now and that maybe a different drug helped.

I have been helped by acupuncture. I know this is costly do it might not be possible, but it may help. I found acupuncture helped relax me, sleep better and reduce my pain. Due to lockdown I've not been able to access acupuncture do things have badly flared up but I hope to start going again soon.

Hang on in there. Nerve pain is really tough to deal with.

All the best

[medicalmess in reply to Stillsmiling_Just]

I recieved treatment for my ACNES in August and i now have no pain from it at all. I had ultrasound guided injections

[medicalmess]

I had ACNES too!! Did you ever recieve treatment for yours?