It's also only in Nov. 2012 that my symptoms began - what happened that it went 'nuts' so fast? Did I do or not do something that made it so aggressive? I thought I had time ... to adjust, sort out my living/working issues. I'm a grown woman and yet I'm scared to death - I feel like I've lost "me" ...

Hi Mel...

Mine began in my left knee in Aug 2011, now spread to my whole leg, both feet, left arm, spreading across my back....it's scary when it feels like its trying to take over I've no idea why it does what it does, or why some folk keep it isolated to one area and it spreads in others. Don't think the docs do either. It is shocking how fast your life changes, and I too feel that the me I thought I was has been lost. It's frightening all round, the pain and limitations, the fear of the future...

You will get some kind of handle on it and learn to cope, but I understand that six months of that much spread must feel insane. Don't try and reason too much, I doubt you've done anything to make it spread, I think you've just been incredibly unlucky. And there's always hope that it will stop and then go into remission.

Good luck and I hope things improve soon and the spread stops. You do end up thinking every new pain is the CRPS spreading, I hit my finger today and it hurt like mad, then went very red and burning and swollen and I immediately thought 'oh no, that'll be the next place then'. You can drive yourself mad because CRPS doesn't obey any laws or behave in one set way, you just manage it as best you can and try to keep positive.

Why us hey?!

Bram.

Thank you for replying Bram - I've been looking for a support community ... There was no reply to my "hello! New to neuro-new RSD"; then no reply to my query about ketamine - I was thinking I hadn't found the right place for any community support, which makes it worse in a way. You think you're really alone. Do you know anything about the ketamine infusions Bram? They're going to do a 3 day course. Mel

Hi Mel,

It can sometimes take a while to get into a forum, but most people are really friendly and helpful so don't worry It's a weekend, and it seems to be quieter then!

I've read a bit about ketamine infusions but not had one, they're not easy to come by in the UK I think. I have seen a couple of videos about them on YouTube, so try doing a search on there. There is information on websites too but read as much as you can and try to come up with a balanced view, you do tend to see more negative comments on forums as most people are asking on there because they have a problem.

I'll be interested to hear how you get on with it. I'd love to try something new, but my docs are very conservative and unless it's sanctioned by the nhs they don't want to know...if it costs they aren't keen

Also try using the 'search' bar on the top blue menu bar, and searching for ketamine - there's bound to be a thread on it as I know it is very well regarded by some.

Have a good weekend

Bram.

You have a good weekend as well - take care & I'll keep you posted on how I manage with the ketamine. Best regards! Eileen

Sometimes the spread is caused by the ignorant people treating you. Ice, Hot and Cold water contrast therapy aggresive physio are the 3 worst treatments. The slightest trauma can cause it to spread, my first was the use of a sensitivty pin 4 ins outside what was thought to be the affected area caused it to spread from below wrist upto elbow