Hi

I'm Rose, I'm 20 and I'm from the UK. I have full body RSD following a fall 4 1/2 years ago. (scary!) I also have HMS and secondary generalised dystonia. I'm not going to go through the full history of it because most of it is long and painful, just simply I have had sympathecic blocks, sympathectomies, other blocks, physio, hydro, ot stuff, pemidrinate infusions, eps. tried almost every med out there, seen a pain psychologist etc..I'm currently on oral ketamine (and other meds) and have been for over a year, and it has definetly made a difference to my pain levels and alloydinia levels. (I take 25mg 3x day). However, even though the pain is sligtly easier at times (not atm though) I am still unable to use my arms/ hands, or stand/ walk etc so am in a wheelchair full time and have to have constant care. grrrrrrr. I also get really dramatic RSD symptoms such as swelling/ colour change/ alloydinia/ etc etc...

However, I have just started university 4 hours from home and am living away from home!!! It's brill! but abit weird - getting used to live in carers and trying to manage my pain.

Has anyone found a way to cope with fitting their life round the 2 hours of pain relief that my painkillers give? I find that taking my tablets removes enough pain for me to be able to achieve stuff but that after about 2 my pain goes back to being so bad I can't think anymore... (horrible, you can't sleep, think, concentrate etc - but I guess you all know about that!) any advice?

anyway
nice to meet you all!

rosie xxx