Heya,

I went to college with another person who had RSD and one of my teachers mothers had RSD.

At uni, someone on my course's best friend at home has RSD.

I was out shopping in Cambridge with mum whilst I was in hospital a couple of years ago, went in to M and S to buy something - and the person who served me had been in hospital recovering from RSD the previous year.

When I was at boarding school I had 2 people my own age with full body RSD within a 30 minute drive of me.

I went to church with a specialised RSD OT who had dealt with loads of us.

My old GP practise had another RSD patient which is why I was diagnosed in 2 weeks as they recognised it.

My sister is a trainee nurse and has treated a patient with RSD in the arms and was the only nurse (and medical practioioner) on the ward who knew what it was (and because she's a bossy cow told the patient to stop whingeing and start moving. she is SO lovely - NOT).

BUT. Before I developed it I had never heard of it!! My mum used to be an orthopeadic nurse and worked with fracture clinics etc and yet, she had never seen it before. She is now a captain and sister RN in the army and has never seen it despite tons of trauma cases/ being asked to assist in review of trauma cases.

So why? Firstly I guess there aren't that many of us that stay on to get diagnosis's or who don't recover properly. Secondly, It's all the name game - as Artist said there are so many names for this disease. Thirdly, to be honest quite a few of the people here are house bound etc - and so if people don't really know what's wrong then they can never discover (think what this disease would be like without the internet to find other people for support!). Before it would just be either "some form of pain" or something.. Deb - isn't Manhatten (is that the right place?) one of the most uber uber populated places?

I don't know. It's really bizzare! It should be better known.

As for changing the name from RSD to CRPS. I HATE CRPS, I won't even use the name. And as for drs, well, my GP still believes I have muscular dystrophy instead of RSD, as do most of my non specific RSD drs....because they see the word dystrophy and immediatly go "MD!"

GRRR.....

Love

Frogga xxxxxx