Hi Andrea,

When I was first diagnosed I was warned by many to stay away from these sites. Obviously I felt that I could deal with them and I have but to be honest, it maybe a little too heavy for a 12 year old. We do read the worst case scenarios here.
Allison does sound a very mature and gorgeous girl but being in pain at that age would be so very scary and sad and to read the problems that many of us have may just give her a feeling of doom.
As mature as she appears a 12 year old does not have the brain maturity to comprehend that what she reads here may not be a true representative of the disease, as for every person on this site with RSD there are probably several more who are managing the disease quite well and getting on with a fairly normal existance.
Fear does impact all symptoms and can definitely result in increased tone which in turn creates more pain.
As her advocate and has someone who knows her better than anyone else
I am sure you will know how much is too much but if it was one of my children I have to think that like most things on the internet I would be screening just what she does read.
Have you thought of relaxation therapy? Does she have a psychologist? This is so much for one so young to live with that she really needs all the psychological support she can.
She is so lucky to have a mum like you who is obviously so loving and caring.
My heart goes out to you both.
Tayla

Hi Andrea,

Having Ali only be 12 I can totally relate because I was 13 when I first got RSD. So I 100% agree with Roz's comment, You have to be her advocate!! And her biggest supporter and cheerleader.

Without my mom, I would definitely not be walking today because when I was 15 my muscles were completely exhausted and the pain was soo bad and I wanted to give up. Without my mom I would have. She made me do it, go to physical therapy and made me get up every morning and do what I had to do so I could get where I am today with college and jobs. I definitely couldn't do it without her and in 9 years when Ali is my age, I am sure she will be saying the same thing! I am not saying that I don't live in pain because I do but it always helps have someone in your cheering section!

Don't give up.

i was 12 or early 13 when i first heard the random dx rsd, i think i was a lot like ali i wantd to know everything unfortunately the more i read the more stressed i got. the information helps if you are one of those kids who wants to know the best and worst case scinerio stuff. i found that the stuff that said i couldnt do something motivated me to do it...of course it hurt for a while afterward but i felt better knowing i could do the things they said i couldnt.
im not sure if i mentioned it before but the hyperberic chamber really helped me when i got into that stressed up ball that felt like moving was awful. the lying flat on a bed was a challenge but they added pillows that helped and the extra oxygen really helped to calm things down