Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

View Poll Results: Are you Hypermobile?
Yes, I am both Hypermobile and have RSD 10 37.04%
Yes, I am both Hypermobile and have RSD
10 37.04%
No, I'm not Hypermobile but have RSD 14 51.85%
No, I'm not Hypermobile but have RSD
14 51.85%
I'm not sure 3 11.11%
I'm not sure
3 11.11%
Voters: 27. You may not vote on this poll

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Old 06-20-2009, 12:51 PM #1
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Thank you all for your input. It's interesting that most of you aren't Hypermobile as I know on most other forums, everyone has been hypermobile lol - guess everyone is different though!!!

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Originally Posted by daniella View Post
No this is not me. I am sorry though that you face this. I read that article but was wondering Ali does that not make you or others have to do even PT in a different fashion? As a kid/teen I was very active. I would get injuries to heal but when this happened well 2.5 years later still high pain.
I'm not sure if people that are Hypermobile have to have different exerices in PT Daniella, i've never really thought about it - thanks for bringing it up!! I know my PT's have always said that they have to be more careful with what they do seeing as though I am Hypermobile and I was told by the PT's at Great Ormond Street Hospital in London that even if my RSD ever goes into remission, I will probably always have to have PT due to being Hypermobile as my joints are pretty weak.

Thanks again everyone. It's nice to see if others have the same issues as me also !
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Old 06-20-2009, 01:05 PM #2
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Again I am clueless especially on the PT and activity with rsd in general but just a thought that came to mind. Also how you have stated other areas hurting too. I am always looking for a connection with myself of all my different pain and conditions. You may have mentioned this before but do you know anyone else that is young and with rsd or similar in you area. Just thought it may be nice to have that connection. We have support groups in our area though they rarely go and I have not been. I am mixed on my feelings I guess. I am so thankful for everyone here though.
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Old 06-20-2009, 04:02 PM #3
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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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Old 06-21-2009, 03:31 PM #4
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I don't like the whole grouping personality in conditions of any kind. The reason is for someone who does not fit the criteria it becomes confusing and often I think a different approach needs to be taken. I know I am not type A and even with my past anorexia I did not fit the typical. In therapy I was often confused and I felt professionals came in with a certain approach when it did not fit me.
Ali I am going to try to hook you up through facebook. I will tell you more through there too. Sending thoughts
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