struggling with nerve pain after amputation and burn

[salamander160]

Hi, I am new to this community and hope I can unload a little bit because I am struggling with nerve pain. I burnt my foot by spilling boiling water over it over 3 years ago, the burn was healing very slowly, I kept getting infections, cellulitis, and swelling. It got to the point that they had to amputate my toes in February because it was the only way to get rid of the infected tissue. All the way through this, even before the operation, I have been struggling with pain in my leg and foot. I am visually impaired, use a wheelchair and have a lot of other health problems. I constantly tell the medical professionals how much pain I am in, My Gp, she wants me to come off the pain releif, how can I when I will have to deal with phantum pain from time to time? I have to go to hospital to have compression bandaging put on my leg, it doesn't matter how much I tell the nurses that I am hurting, or what she is doing hurts me, she just continues, some even get ratty with me and tell me off. I can't help it, I take oramorph before the appointment but it doesn't really help with the nerve pain. I was in hospital last week, no compression, no pain, it was lovely, I didn't have to take codeine for a whole week. The nurses in the ward dressed my leg on Tuesday last week, still no pain, but as the wound oozed, it started to burn and the pain has returned with avengence. the bone where my big toe would have been is very painful, and I am getting a severe burning around the wound and up my leg. Today, yesterday sorry, the nurse put on the compression bandage but it is so tight it really hurts. Nothing is helping with the pain. It is on the stump and on the sole of my foot and along the inside of my foot. When I was in hospital in February, they treated me for gout just before the operation, would that cause this amount of pain if it is still present? I think the nurses think the pain will go away if I rest my legs, elevate them, I have tried everything apart from remove the bandags. would a tems machine help with this pain? I can only take so much pain relief, I cannot sleep, haven't slept for 3 days, an hour here and there but no long stretches. I am at the end of my tether! This is neuropathy I guess and it is very hard to deal with.

[lynxis]

I don't have much knowledge or advice, just wanted to say that I'm very sorry you're going through this. It's not okay that your health providers are ignoring you and even hurting you. I hope someone here has some good insight or ideas. Sending you caring thoughts. ❤️

[ThreeSmiles]

Hi salamander160

So sorry to hear your about the horrible ordeal you’re going through 😕.

I have had nerve pain for five years since my liver transplant (and two further operations in the same area). I was prescribed Gabapentin which definitely helps to a degree but not to the extent that I could sleep. I eventually got referred to the Pain Clinic at the hospital and was prescribed Amitriptyline. This, for me, has been the best thing since sliced bread, and I can now sleep. Downside is that if I run out of them I can’t sleep at all 🫤!

I know we’re all different but you should, if you haven’t already been, be referred to your hospital’s Pain Clinic. Please try and get referred - they may be able to help 🤞.

Good luck.

Miles

[BarnGir1]

I cannot imagine what you have been going through. I hope it helps a little to be on this site. I have felt helpless before, and sometimes even hopeless, but this site has provided support even when I just read posts because it shows that there are some people who really do care. Please reach out when you feel the need. And keep us posted please.

[salamander160]

Hi, Thank you all for your kind responses, yes these communities are often far more helpful than the medical professionals themselves, although they are good at their jobs, don't often understand what the pain can be like and how badly it can effect us. At the moment thankfully, the pregabalin seems to be holding the nerve pain off, just get a gentle throbbing but I am going for a dressing change this morning so no doubt the pain will kick off soon after they start cleaning the wound, that's when it really hurts. sometimes the pain caused by the cleaning can last days. Keep my fingers crossed. I am also using a pain patch, perhaps the two of them are enough right now, who knows. take care all. Adrien

[mariootsi]

I bought a tens unit and it seems to help temporarily. It is wireless and rechargeable. Very convenient.