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Old 06-20-2009, 04:02 PM
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ali12 ali12 is offline
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Join Date: Jul 2007
Location: Yorkshire, UK
Posts: 2,463
15 yr Member
ali12 ali12 is offline
Magnate
ali12's Avatar
 
Join Date: Jul 2007
Location: Yorkshire, UK
Posts: 2,463
15 yr Member
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Thanks again Daniella! I'm pretty clueless about PT also, I only know what my PTs have told me but even then don't agree or understand with some of the things they say. The PT doesn't seem to be helping me so we have basically told my PTs that if things don't start improving any time soon, we are going to leave the PT as it seems to be making me worse sometimes. I think we will see how the intense PT goes if/when they decide to do it and then if that doesn't help, we will leave it and just go to sessions every few months and i'll do my own exercises at home as it's really stressful having to go to sessions every week when I have school. My PTs want me to go more but it's impossible sometimes. I wish they'd start understanding that the PT flares me up sometimes but they don't and just want to continue on with it. I've been having PT for over 2 years now and it hasn't helped that much (other than the inpatient PT program when they got me walking short distances) so I don't really see the point in going if theres no improvements.

There doesn't seem to be hardly anyone in our area that has RSD. My PT's arranged for me to meet up with a girl who had RSD and it has now gone into remission but we couldn't meet up as her mum got took into hospital. We tried arranging to meet up again but my PTs couldn't get ahold of them. Me and my mum have set up a website for kids in pain to give support and i'm hoping that when the word goes round, we will get some kids joining from near us. I'd post the link but know you can't - if you have a look on my Facebook profile though, you will find the link if you want to check it out. It's really stressful sometimes not having any kids to meet up with with RSD in our area. I don't think they even offer any support groups round here for kids with RSD as there doesn't seem to be that many for some reason!!!

I'm thankful that I have all of you guys on here to talk to also. I honestly don't know what i'd do without you all. I have my mum but it's not the same as she doesn't understand fully what RSD is like so it's nice knowing I can come here and get some support!!

Thanks again for your input! I hope you're doing well!
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