Useful websites on RSD for children
 

Hi there
Does anyone have any useful websites for children / teenagers on RSD?
Ive just been diagnosed with RSD/CRPS in my left leg and was looking for a childrens forum all about RSD, but Isimply cannot find any!!
If you have/know of any websites please reply back asap
Love Alison
Many thanks

Hi Kay,
 

Someone will come on soon to help you I'm sure.

How old are you? We have several teenagers that are on here. One goes by Inhishands. She just turned 17.

Please come on and tell us about yourself. I always hate it when a young person gets the RSD. It's such a life changing illness and young people seem to be more active and then to have to quit it all is very hard.

Glad to see you post and I hope you come back here.

Ada

Hi
 

im not a teen yet - im 12 nearly 13
I developed RSD following a recent ankle sprain. I had physio for 6 weeks including Hydrotherapy both of which didnt seem to work. The Physiotherapists told me it was all in my head and to stop putting it on.
My mum had enough and went crazy - she then took me to a different hospital where they immediatley admitted me. They did blood tests which comfirmed I was at risk of developing Athritis. They told me and my mum that they thought it was RSD but to be certian they had to reffer me to a different hospital. The day after we went to the other hospital. Where we saw a RSD specialist who comfirmed it was RSD / CRPS type 1. The day after they did a nerve block which didnt work. I was then prescribed Gabapentin and ever since I have been really wobbly which is making matters worse - does anyone know if this is a side effect?? Ive also been having breathing difficulties - my mum phoned the hospital and they just said it was probably a cold and to leave it - but I dont have any symptoms of a cold.
On Wednesday Im going to see him again so we will mention it to him -but if anyone can offer any help in the meantime that would be much appriciated.
Please reply and sorry this is such a long post
Love Alison
-x-

Hello Alison

Here are a few sites for you. I hope they help! :)

http://www.angelfire.com/wi/rsdhopeteens/personal.html

http://www.rsdescape.com/RSD%20In%20Children.htm

http://www.rsdescape.com/

http://health.groups.yahoo.com/group/rsdhopeteens/ (search on yahoogroups.com for more yahoo RSD teen groups)

http://fightingagainstrsd.tripod.com/

These aren't forums, they are just sites for children/ teens with RSD. You can find the email groups at yahoogroups.com though.

I am 17, have full body RSD and I know what you're going through ((hugs)) :hug: (who Ada mentioned above :))

It is really hard going through this when you're young... it stinks! But hang in there. You already have my email address if you need me (hugs). :hug:

Thanks for posting my site, Monster!!!

Hi Kay 159,

The RSDHope Teens yahoo group is at http://health.groups.yahoo.com/group/rsdhopeteens/ ...I've run it for a number of years (maybe as much as eight or nine years now, come to think of it). If you want to join, let me know...either go to the site at http://www.angelfire.com/wi/rsdhopeteens and email me from there, or send me a PM here with your email address and I'll send you an invitation. If you sign up by yourself through the yahoogroups site, make sure you include a message that I've been in contact with you...or at least your age and that you have RSD.

I'm 24 now, but I've had RSD since I was 12, so I've pretty much gone through life with this. I certainly hope you don't have to!

-Betsy

SKIPS!!!!

xxx