JoAnn

[Guest guest]

Hi JoAnn

I guess the best place for me to start is the beginning. I got RSD from Carpel tunnel operation, and have had all the various blocks. I've had RSD now for 8 years or so. The last what must be getting on 2 1/2 - 3 years it started spread to my legs. I also have been having bladder problems/ low bp - to the degree that I can black out after being up right for 40 mins or more.

Last November I did HBO ( hyper baric oxygen) it was fantastic - and I would highly recommend it to anyone. I had no pain, my limbs were warm, I was running up an down hills, I was feeling great!.

Couple of months again I had a nasty fall and things took a turn for the worse. RSD came back with vengeance. I now have two wheelchairs, one which has to be pushed by someone as it has small wheels,and the other is self propelled ( has two big wheels ), but as I have rsd in my hands I have no grip or strength to push myself, hence needing an electric one.

Because I have had all the blocks that are available over the years, I am going on a in patient residential pain management programme, which lasts for a month. It is basically from 9-5, intense course every day, and people from all over the UK go there,and apparently well known around the world. It is at St Hospital, better known as Tommy's ( Guys & St 's).

The website for INPUT is:

http://www.inputpainunit.org/

Which tells you all about the course.

I have no idea whether it will work, but I have nothing to lose, and will gain some peace from the kids..lol

They have one staff on call at night, but as it is basically a course ( although we are technically patients as we are in hospital), we are free to come and go as we please in the evenings. so if we want to go to the pub, to a show we can.

we stay in a flat and there are 20 people per course (per month) and in our flat we get a bedroom, bathroom/shower room, kitchen and a lounge. Some are smoking flats and some are non smoking, I hope I get a smoking one - well technically speaking by then I should have a non smoking cos I am suppose to be giving up..lol but we will see :-)

We are literally opposite the houses of parliament.

http://www.explore-london.co.uk/wesbw.html

The smaller building on the left ( light/white) is INPUT and the main part of St is the large building next to it. Over the river is houses of Parliament and big Ben.

As for knowing several of the members, yes I have been around for yonks and yonks, guess I am bit like a piece of furniture or wallpaper, I am always here but you may only notice me every so often..lol.

I use to post RSD stuff etc, but rsd hasn't made it possible for me to do things lately like I use to do. hopefully, things will improve soon. They normally do, it is a case of working things out and knowing what to do..lol

Well I had better go and finish sorting some things out for tomorrow.

Take care

Sharon