Severe nerve pain

[Runaround50]

How the actual fuck do people manage this kind of pain??

I was diagnosed with nerve damage in my left arm in January. Been prescribed amitryptyline which does nothing. This latest flare up is off the scale. Pain in my hands, wrists, shoulder, neck, chest ( referred pain?)

I've tried every pain killer, deep heat, deep freeze and CBD oil and now I feel sick with pain. Consultant says nothing can be done? Really?? It's horrid. I'm thinking of cannabis next !

Please help someone. I've got another GP appointment in just over a week but don't want more painkillers.

What triggered the original pain? Did you have an injury?

All of the medical help aside, the pain relief and support form the GP, I would also advise you get the curable app on your phone and work though it.

I know it sounds a bit weird, but I have suffered with nerve pain, post operation and it did really help me frame the pain and helped me cope and not go into the panic mode. It doesn't "stop" the pain just enables you to cope better.

And then gradually with the coping you feel more able to sleep and get on top of advocating for yourself.

Hi @tartancladpjs
This is the thing, there is no apparent trigger that I can recall.
One day last October, I was in agony and thought it was my heart. Several tests later, they tell me nerve damage from an accident/ trauma? But I haven't been in an accident.

These flare ups occur every few weeks.

Have you tried TENS?

What nerves does your doctor think are affected, have you had an MRI. I had similar pain which turned out to be a shoulder impingement. What tests have you had done. I would expect a referral to the chronic pain team, a neurologist and consider nerve injections or nerve removal if that is the cause. Have you had shingles, just a thought.

www.hopkinsmedicine.org/health/conditions-and-diseases/brachial-neuritis?amp=true

Is it this? I ended up in A&E two nights on the trot as I thought I was having a heart attack or a stroke. I couldn’t sleep, pain worse at night - felt like someone was putting a hot poker through my back and hammering my elbow with a huge hammer. I was put on Valium to cope and it faded after 3 weeks.

I still (2 years later) have painful spasms in my left hand and 3 fingers have no sensation from nerve damage.

Neurologist said it was likely a post viral autoimmune reaction (maybe after COVID - though I didn’t test at the time) rather than a physical trauma to the brachial nerve plexus.

The pain was intolerable until I was on Valium but that was never going to be a long term solution.

I have had debilitating back pain for 4 years, had every medical intervention I could, nerves burned, injections. Every drug, even medical cannabis, infusions of ketamine. What finally helped me as understanding pain and doing relaxation exercises on the Calm app, I also did hypnosis for pain. It's a long and hard journey. Managing my stress levels is key. When I start to feel pain rising I do anti panic exercises. It's not a quick fix and I never believed this would help but it has.

Have you been prescribed Gabapentin or Pregablin? Both are excellent for nerve pain.

Sorry i meant to say curable app here I use calm to get to sleep!

Other than the prescribed Amitriptyline, are the painkillers you have tried prescription or over the counter medication?
From experience, you need to make an appointment with your GP and insist how much the nerve pain is affecting your daily life. Time off work, lack of sleep and not being able to function for the family. Only when the GP is aware of the impact on your ability to function, do they sit up and take notice.
You clearly need prescription painkillers with the dose being adjusted to suit your pain. It’s a horrible, debilitating condition and you may need to put up with the side effects to alleviate the pain.

The tests which I have had, seem very basic.
The nerve conductor tests whereby they attach some clips to your fingers and run electric currants through the hand and arm (?)
From this test alone, they suggested nerve damage, but didn't suggest which nerves in particular. From there, I was sent to the consultant who basically informed me nothing can be done, nerves are very complicated. No steroid injections, surgery or pain management.

When I speak to the doc next week, i will ask for either Gabapentin pregbalin along with a referral to pain clinic and a neurologist. I simply cannot tolerate that level of stabbing burning pain for the length of time it is lasting. The last two nights I though I was having a heart attack and was ready for a+e this morning.

I'm worried about secondary breast cancer ( had primary BC 13 years ago) because it feels like there is pain in my back or something pressing.

No MRI has been performed.

All in all, I've got a lot to try and sort out with this now.

I know you said you cannot tolerate it, but I think if you don’t come to terms with it not bring treatable you will never find any peace. Nerve pain is extraordinarily difficult to treat. I have had all the meds and two different spinal cord stimulators, but nothing helps and I’ve had to accept nothing will.

My nerve damage was caused by chemotherapy. As a consequence I can no longer walk or use my hands. It is 24/7 unrelenting torture and I only stay alive for my children.

I've got peripheral neuropathy and that is a stabbing electric type of pain as well as some C6 damage which can render me useless if it's particularly bad.

I can't believe no one has offered you gabapentin or pregabalin - gabapentin makes a huge different for me.
It reduced my pain from 75 percent to about 35 percent.

I hope you find some solution soon op I feel ever so sorry for you, it's awful to be in that much pain

What really did it for me and Nerve Damage from hip replacement, 12 yrs ago, is the supplement Inosine and Sphingolin available at health food locations and other online places.

I live with a lot of body damage but the burn and tingle issues are few now...I live with a lot of dead nerves.

Oh I should have known, I'm not in UK and don't fit here.

I was just going to suggest these too. I know you said no more painkillers but sometimes it's a matter of finding an effective one.

Normal painkillers will do nothing for nerve damage. It is only the Amitryptaline which will be working on it. Other options like pregabalin or gabapentin May work better for you - a referral to the pain team would be really helpful to help you manage it.

I’ve been on everything at one point or another and hated amitryptaline the most, Nerve pain is horrible but there are ways of managing it.

I'm sorry OP, nerve pain is absolutely horrendous.

I have motor and sensory neuropathy in my lower legs, ankles, feet and hands and it's unbearable.

Amitryptaline and Gabapentin both gave me some nasty side effects so I'm currently coping with cocodamol.

I've seen pain management but they were almost completely useless and said there was nothing they could do for nerve pain.

Mention capsaicin cream to your GP, there's serious supply chain issues with it at the moment so you may not get it but it can help to fill the overreaction from the nerves which causes the pain.

Warm water can help with mine, nice soak in the bath maybe.

Only other I have found to help is 10% ibulieve gel, I know it's not joint pain but it does seem to relieve it a little especially further up my legs where the muscles have been cramping because of the pain lower down.

@OnTheRunWithMannyMontana Have you tried topirimate? I’ve been on all drugs mentioned here with lots of side effects so switched to topirimate - the first 6 weeks or so were bad but have been on it for years now much better than the others for me.

Hi. I sympathise ….
I had the same nerve pain as you but am luckily now cured
here’s my story incase it helps, it may not be the same route cause but I hope it helps you to question deeper.
So ….
horrendous nerve pain in right arm. Losing use of my hand. All the drugs you could imagine and sometimes I doubled up the dose because frankly the pain was so bad I didn’t even care if I overdosed.
mri’s
Xrays
cortisone injections in my shoulder
eventually after 2 years I’m due to have shoulder surgery for nerve impingement

however my hand started to go black off and on. And luckily on one occasion right infront of my consultant. the blood was being cut off.

a rapid change of plan had my spine checked on mri and they found that my c5 and c6 vertebrae in my neck had grown bone spurs that were squeezing blood vessels and nerves.
Had a foramintory ( can’t quite remember the exact name ) operation on my spine where they went in the back of my neck and cut away the bony sections of vertebrae.
I awoke with the back of my head shaved, indentations from the vice that had kept my head still and 9 staples going up my spine to my head.
recovery was awful. Sickness. Vomiting blood. Pain. Omg pain. I switched to drinking a bottle of wine with my meds to try to dull it.

But. Hey. A few months on. I was 100% better.

Haven't heard of that one but will mention it to the GP. I think next step is Pregablin.

My problem is I'm now so scared of the side effects. I had auditory and visual hallucinations on amitryptaline and Gabapentin to the point of having conversations with my invisible mother in law and convinced that music was coming out of the fan. It got a bit scary!

There are a whole raft of medications you can try. Anti depressants, anti epileptics, gabapentin and different strengths. You GP just has to be actually interested in finding one that works for you.
My diabetic patients all have chronic neuropathy, I do as well due to spinal damage and I'm on a high dose of gabapentin which works for me so I'm still able to work full time.
If you get no joy ask to be referred to the pain clinic.

Pain killers do absolutely nothing for berve damage. Neither will amytriptaline.

As above you need a nerve blocker such as gabapentin but be very careful emwith it as it can have some pretty nasty side effects.

I have an injury to my shoulder that has caused nerve damage in my neck, head, back, legs etc as the joints and muscles aren't doing the correct jobs so have damaged nerves else where. As a result I suffer from horrific neuralgia. There are days when even my hair moving causes me so much pain I end up being sick. So I absolutely sympathise.

You need to push for a referral to find out what has caused the damage as there are illnesses that can cause that sort of damage. MND being one.

I’d be trying acupuncture if western medicine doesn’t work. It can do stuff other meds can’t. £60 a go where I am

Thanks once again all.
Seems like I need to get to the bottom of this nerve pain, as there has been no injury or trauma.

I am concerned that the pain is now in my back and between shoulder blades. I want a full MRI for sure.

I was contemplating an oestopath (?) but feel the source needs to be identified first?

@Runaround50 I would perhaps see a sports therapist first. I see a guy local to me and he has made a huge difference.

Honestly it can have started as something really simple and just escalated.

Hope you get to the bottom of it