Quick update on water cooling after flare-up. I did my standard 30 minutes on a cross trainer then put my feet in luke-warm water (just below body temperature) for 15-20 mins. This had no significant affect on the flare-up disappearing, it was more or less the same as putting feet up and waiting 10-20 mins for it to calm down again.

Not sure how useful this would be for a diagnosis, but I'll report it to the specialist when I next see him after this bone scan next week.

Just thought I'd post an update on my progress. I got all my blood tests and bone scan back and they didn't show any bone infection of any kind. So my pain specialist now tells me it looks like a sub-form of CRPS in both my toes.

I've since had an intravenous sympathetic lumbar block on my right leg (tourniquet of the lower leg and injected anaesthetic and sympathetic nerve block liquid) into a vein in my foot. This was 7 days ago and when I go on a cross trainer for 30 mins, both my feet seem to swell up and go red exactly the same i.e. the block doesn't seem to have had any beneficial symptom easing effects.

From this I understand it is SIP or sympathetically independent pain - meaning from what I gather as confused brain signals to the feet, rather than local damage in my feet?

I'm due to see a different pain specialist, specifically in CRPS next week, but just wondering what the thoughts were here too? If it is a SIP form of CRPS are there any recommendations on what I could do now? Is it a case of re-training my brain for the correct signals? - if so how?!

The docs are running out of ideas now, but my guess is probably a dose of pregabalin that was talked about before.

Any thoughts much appreciated

I Have the same problem as yourself, would be good to get intouch.

Hi Nige I'm quite happy to have a chat over the phone or skype if that suits. PM your details if you would like.

I'm off to have another nerve block next week in my left foot this time as it made a 10-15% improvement in my right leg. I saw a CRPS specialist up in Cambridge before Christmas too which was quite positive. Happy to share my info

I have rsd of the right foot and they do lsb (lumbar sympathic nerve blocks) after the shot my thigh is usually numb and my foot is bright red. As your dr. talked about the next step. I am unsure as far as pregblin with rsd. I think it is a matter of different strokes for different folks. My next step is a stimulator trial and if that fails I am requesting ketamine.

Just thought I'd post up an update on my toes. I found out about a transdermal PLO gel base that can be used with pain management drug delivery into the skin as opposed to orally. Its standard practice and widely available in the USA/CA, but not in the UK or EU.

I managed to track down a specialist compounding pharmacy in London, UK **that compounds in an imported PLO gel from Canada called Medisca VersaPro gel. I just received it last week (£45 for 100g) with 10% amitriptylene compounded into it and have been testing it out. So far results have been good. I put it on before walking and it seems to stop the erythema leading to the stinging pain. When I run it seems to come back, but I need to do more testing before anything is definitive.

For me transdermal drug delivery is so much more preferable to orally taking drugs with all the side effects as I just can't focus on my work and don't like feeling semi comatose.

The NHS is currently trying to fast track something very similar called AmiKet - which is essentially the same thing with 2% ketamine added to the mix.

Anyway just thought I'd share my info in case it can help others who have not heard or considered this type of drug treatment