Hi

I can totally understand - I'm 20 and I have RSD full body so severe neuropathic pain 24/ hr full body. The meds help abit but I am still at a high 9/10 all the time - I haven't slept for more than 2 hours at a time since I developed this as EVERYTHING hurts...lying down/ sitting etc. (Due to the RSD I am ina wheelchair etc). However, I am struggling on with uni because I know that it will be worth it. Anyway. I HATE the fact that because i'm very good at hiding it (well.// I've had it 4 1/2 years - so after a while you realise it hurts more to get upset than to try and carry on... that people are like "oh. I didn't realise you're in pain" (Erm.... why do I take about 40 tablets and syringes a day?? for fun? ) although I don't want people to treat me differently because of it....somedays it would be nice for people to recognise how dreadful the pain is to cope with all day for years at a time!

Haven't really found a way of maanging it - just try and pace through it and get on with it... also pain drs/ other drs/ trust me to "adjust" med doses for severe B/T pain. Also use short acting meds before I know that I'm going to be doing something really painful - such as before being dressed/ transferred to try and stop the B/T being as awful! also, i try not to totally exhaust myself - so I only go out one night a week (well... I'm a uni student - my mates are out every night - wheras I stay in and try and rest) and try to be selective about what i take on (yeh rightl....)

good luck!
rosie xxxxxx