Hi, thanks for your response. I will keep a diary ... things change day to day hour to hour sometimes so it it would be really valuable. Good idea!
My doctor has me on a low dose Gabapentin at the moment - its not doing much so far but I have been building up the dose for a week so fingers crossed it will start working soon. I was on a high dose anti inflamatory and Omeprazole for a couple of months but have stopped taking that now, they also prescribed Diazepam and Pethadine at times when I have been really struggling.
Pain is a real issue for me, I am allergic to a huge list of pain medications so have to take any new medication really slow to start with just in case. I have a pain meditation app on my phone which helps me get to sleep!
I had a new symptoms last night ... the bottom of my right leg and foot felt FREEZING COLD painfully so, still the same this morning.
The Neurologist I will eventually see is a specialist in periferal nerve issues so hopefully will be aware of the conditions you mentioned. Our NHS allows us some choice in who we see - I will do some research to make sure he is the best person for the job!
Will make sure I get my B12 checked - I hadn't heard of that before and pretty sure they didnt test that in my bloods last week.

Thank you!