Originally Posted by ali12

Sdlevitt,

As Pete and Sandy said, it's a great sign that your daughter is out having fun with her friends and playing like a 'normal' child should!!!!

I've had RSD for 2 and a half years now. For the first 2 years or so, I didn't feel like doing anything because of the pain and mobility issues that I have (I was in a wheelchair) so I didn't go anywhere. I just sat in bed all the time. I lost ALL of my friends from School because I was unable to go and they didn't understand RSD at all which was the hardest thing i've ever had to deal with. I still spend many days now crying about that but if nothing else, since having this illness, I have learnt who my true friends are and am better off for it. It's took me until now to try and go out again. I still have LOTS of pain but have realised that lifes too short, you need to go out and have fun!! My grandad passed away last year and has silly as that sounds, I think that was a big turning point for me - it made me want to try and do him proud and work through the pain as much as I can. He was always a very happy person and I knew that he wouldn't want my life to be ruined any more than it already has been because of this RSD. Yes, it's extremely painful to go out and do 'normal' things and I can't do a lot of things my friends can but as Pete said, some things are worth the pain!!!! I pay for it a LOT afterwards usually but i'd sooner have that then ruin my life altogether.

As Sandy and Pete said, encourage your daughter to go out as much as possible. If she can go out now, the lest chance she will have of losing any friendships, having problems fitting in with school etc like so many of us have.

Please, listen to your daughter when she is telling you what is wrong!! She needs you to believe her right now as she's dealing with all of this. I honestly don't know what i'd do without my mum, if it wasn't for her, I would have never have gone to the intense Physical Therapy Program and got back walking. She's never left my side the whole time that I have had RSD and it's helped so much more than you'd believe!! We NEED people to understand and believe us ... it can get very depressing dealing with this awful condition!! You know your daughter better than anyone else and as everyone else said, I don't think there's any way she would be able to fake RSD!!! IF however, you do think she may be, get a second opinion and see what they say and then get her to see a Psychologist etc - don't give up on her no matter what the issues are!!!!

I wish you both the best of luck with your appt and hope you get the help you need.

Alison