Thanks Bram and Catra - it was a really tough day yesterday, looks like it will be today but at least I got a little bit of sleep. Was pre-emptive with the adult sleeping issue, had a romantic night with Baz and thanks to a bit of initiative and care not to hurt me, that helped a bit sleep and pain wise. Was easier to get to sleep, but staying asleep was very hard with the muscle spasms. I honestly don't know what I'll do when I inevitably get too sore to save that last diazepam tablet. While it didn't take away the spasms totally, it did really knock them back a bit temporarily. They're only 2mg tablets though. I really hope the GP will consider prescribing them tomorrow when I see him, but I can't get my hopes up after previous issues with him. I am going to try and get round it by just acting as if they're normal prescriptions for me, as while the pain clinic didn't prescribe them, the hospital did when I was admitted.

Interested in hearing more about other UK-available treatments so I can keep pushing for some help. Maybe if I say what my issues are, and what I've had, you guys might have shared them and have tried something I haven't. Having read posts here and on UK forums, I know it's rubbish that I've had "everything" like the pain consultant said and I don't know if I'll ever stop ranting if I start on his comments about other opiates being exactly the same as buprenorphine and how if I'm tolerant to one I'm automatically tolerant to all. He even said Palexia was just buprenorphine with amitriptylene added. Gah, must stop ranting, not good for me.

So the issues I need addressing somehow are:

Obviously the burning nerve pain - when I saw pain consultant 4 weeks ago this was in my thighs, lower back and groin. Within the week of seeing him it spread to below my knees. Now it's right down to my feet, with my right side being all the time and my left exacerbated by exercise. Yesterday it started in my forearms - I have had numbness issues with my hands for years that have been relatively ignored by the pain clinic (well I suppose it wasn't pain was it).

Intermittent swelling of the feet, knees, calves - this was only a mild issue when I saw him but I didn't even get to tell him as he wasn't receptive to listening to any of my symptoms. Since then my feet have been swelling more and so has just under my knees. Also had colour changes - my left foot went purple in an epsom bath and the other foot went see through white. Last night and this morning my forearms were lobster red but not swollen.

Back pain - this he says is nothing to do with CRPS, but is the original issue I went to him for and the buprenorphine isn't touching it any more. It is however neuropathic (as there's nothing mechanically wrong other than the teeniest bulge where I had my microdiscectomy, which is not causing symptoms apparently).

Numbness in my hands.

Weakness in legs.

Unrelated (?) achilles tendonitis in both heels due to a lump in the heel bone. I think this has allowed the CRPS to spread though. Can only wear hideous Crocs lol.

What I have tried over the years is Diconal, Diclofenac (can't have NSAIDs now), Amitriptylene 5mg, Gabapentin up to 2700mg IIRC, Pregabalin 350mg, Oramorph 10mls (worked for the backache and partly for the burning), Cymbalta 60mg, Diazepam 2mg (works a bit on spasms). I have an NSAID gel for my heels which doesn't do a right lot.

I'm currently only on buprenorphine and have a tiny amount of diazepam (one tablet) and Oramorph that the doctor probably thinks has run out. I am utterly terrified of it going!

I have had hydrotherapy (worked wonders for back pain), physio (made things worse as I had herniated disc at the time), but both of those were 4 years ago under a different doc in a different county, I have not been offered either here. When I asked for a physio referral so I could try hydro again, the GP gave me their number and asked me to ring them and tell them he was too busy to refer me and see if they'd let me in anyway - that's not how it works so I will be pestering the GP again. Also need a podiatrist referral for my feet.

Who do I ask for a referral to? I am definitely asking for a referral to another pain clinic in the area, as opposed to a different doc at the same one. Have spoken to others who have left my pain clinic to go to the other for similar reasons. Do I ask for a neurologist referral, or maybe a rheumatic specialist? My sister has been going through problems with her back that started fairly similar to mine (without the CRPS) and she has seen the rheumatic specialist and has been diagnosed with palindromic rheumatism and an "emerging connective tissue disorder" and she thinks it might help me to see one? Autoimmune things seem to be a bit rife in our family lol - both parents have newly diagnosed Type 2, my twin has Type 2, another sister has Raynaud's, my Dad has RA. I am negative for RA but had high smooth-muscle antibodies (with no accompanying liver issues). GP wants me to retest as I came down with flu just after the test.

The other option I have is to ask for a referral to the Bath Centre for Pain Services, a national centre that specialises in CRPS, but I don't know if that's a bit OTT? http://www.bathcentreforpainservices.nhs.uk/

It's a long way to go and we don't have our own transport so it would be coach/train and hotel. We are on a very low income.