Hi Jennelle,

I'm not sure if you have internet access on the rehabilitation program. I know when I went to the program at Great Ormond Street Childrens Hospital in London, we took the laptop with us but I wasn't able to use it too much as I was generally too tired. My mum did most of the updates for me.

I just wanted to write and say that I hope everything is going well for you and that you aren't in too much pain and are finding the program helpful!! The program I went on was h*ll but it did help a little ... without it, I would probably still be in a wheelchair now instead of being able to walk short distances. The second program I went on didn't help me at all but i'm kinda glad I did it as it gave me some good coping techniques. My PTs want me to return back there now but i'm not sure if I want to go back seeing as though the second program didn't help. My PTs at my local childrens hospital don't think it would help either as I have had LOTS of PT during the 2 years that I have had RSD and it hasn't helped that much so they think we need to explore some more invasive approaches.

I hope you didn't have too many problems getting off the pain meds. It was hard for me as my dr took me off them too soon so I had the withdrawal symptoms. Whilst I was on the program, the PTs explained to me that they wanted me to come off the meds as it has been proven that people can cope with the programs a little better if they aren't as fatigued from the meds ... not because the pain is psychological or anything!! It didn't really make that much difference to me I don't think as none of the medications helped.

Please don't be afraid to tell your doctors there if your pain becomes too much!! I was always scared to tell them and it was probably one of the worst things I did!! When I finally did tell them, it was a huge relief and they were pretty supportive and allowed me to have a break etc. It's really important they know how you are feeling so please be honest ... it doesn't make you a complainer if you're in too much pain and it's best that they know so they can try and help you!!

You are in my thoughts and prayers and i'm really hoping that this will help and give you the pain relief you need and deserve!! If you ever want to talk, please know that I am here for you always!

Look forward to reading an update when you feel up to it,
Alison