Anyone else experiencing horrendous nerve pain in arm?

After being first diagnosed with BC in 2010 I had a lumpectomy, removal of all axilla lymph nodes, chemo & radiotherapy, followed by Arimidex. Then at a routine checkup in late June this year, the Onc discovered it had returned, not only in the same breast but in my neck nodes and breast bone. I have just finished another 6 chemo cycles and have now been put on Everolimus (Afinitor) a drug that has recently come out.
My problem now is the horrendous pain that I’m suffering, which the Onc reckons is due to the cancer damaging the nerves. I have continuous pins & needles right down my arm to my fingers which is accompanied by a pain I can only describe as if my skin has been ripped off and salt poured on the open wound. I also get what I call “flare ups” of such intensity that I am brought to tears. (Not something I’m prone to doing!) It has made my right arm useless, I can’t pick anything up without dropping it, and I have no power in what is my dominant arm.
I have been referred to a Palliative Doctor (the Pain Man) in an effort to get me some relief. We have so far tried Amitryptiline, Pregabalin and 5days in hospital having intensive Ketamine treatment (Ketamine Burst). Unfortunately they have either no effect or a marginal one.
The Pain Man has now put me on Slow Release Morphine twice a day which again has only had a small effect and will have to be increased. He has also referring me to a Consultant Anaesthetist regarding having Nerve Blocks.
Has anyone else got experience of nerve blocks? What can I expect? Did it work for you?
Christine x

Hi Christine,

I’m sorry you haven’t had any replies as yet, but hopefully your fellow forum users will be along soon. I have put for you below the link to the area of this website where pain is discussed, I hope it’s useful.

Take care,

Jo, Facilitator

Thanks Jo, I’ll take a look. X

I have had pins and needles in my hand. Mainly on thumb and first finger which goes up my arm. I find raising my arm and holding my elbow for a minute makes the numbness go away.
My Oncologist sent me for an MRI scan of my spine and Brachial Plexus (I had never heard of that one before either!) to rule out/or to see if it was related. But all was okay and they now think it may be due to Carpel Tunnel Syndrome which I had heard of before. It is not getting any easier and I keep hoping that in time it wio ease or even better, go away. But it is not getting better and lying on my left OR my right side wakes me up. Only by lying flat on my back, sometimes with my knees bent, is the only position I get any relief. I also get a sore spot in the middle of my left buttock but I am sitting down a lot as I am knackered so put it down to that as I already know that I have sciatica and take amitriptylene for that.
I am on numerous painkillers for different things, including MST (SL Morphine), Gabapentin, Amitriptylene, and Diclophenac. I was referred ages ag to the pain management team and they juggled my meds about which helped at the time. I think I need to visit my GP again to have a chat to see where we go from here. Not sure if you arm probem is like mine or not but I sympathise with you as pain can be so draining and that is where I am at at the moment. Let us know how it goes for you over the next few weeks. Val

Hi christineW, I have a similar painful arm/shoulder/elbow joint, I use biofreeze along with diclofenic and weekly physio and am just starting to feel on top of the pain after being on this regime for the past two months. Hope you get some positive replies x

Hi Christine,
I have similar nerve pain in my arm, am on amitriptylinee and pregabalin, PET/CT showed an axillary metastatic "lesion"which is infiltrating the area of the brachial plexus, and two cancerous lymph nodes behind my breast bone. Your description of the pain is so accurate, I have developed a wing scapular, which is causing problems with doing anything above shoulder level, and it’s becoming so tooth achy painful. . I had to stop Everolimus, side effects were severe , pneumonitis, mouth ulcers and extreme fatigue, so am on Exomestane which is fine.
Good luck with your nerve block, It would be great just to get a good nights sleep x

Hi Christine, I really feel for you, I have just had my first surgery for lobular cancer. I can’t get pass 4 in the morning with pain in my arm pit. You description of how it feels is awful. I laid up stairs awake for so long this morning, I just had to get up and try and sort something out. Hope you can find a relief, you deserve it. Take care. Janemod xx