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Old 01-12-2009, 03:53 PM
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Join Date: Jul 2007
Location: Yorkshire, UK
Posts: 2,463
15 yr Member
ali12 ali12 is offline
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Join Date: Jul 2007
Location: Yorkshire, UK
Posts: 2,463
15 yr Member
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Quote:
Originally Posted by Pauliana View Post
Ali,

Tis terrible you are afflicted with RSD and so young too. I feel for you as I am becoming very aware of the pain and frustration involved.. I am 53 and felt active and young at heart before this hit me.. I am still young at heart although I am struggling..

You are so right about everyone reacting differently to drugs and treatments..

We do have a similar start to RSD don't we? Those darn ankles anyway..

How is your splint working out? Is it helping with your Dystonia?

Hugs and many wishes for your improvement..Hugs to all,

Pauliana
Thank you so much for your kind words - I truly appreciate them!

I really feel for you - it isn't fair that you should go from being really active to not being able to do much. I totally understand how you feel ... I used to always be going out with friends shopping or playing sports and now I just seem to sit in the house where it is warm as the cold weather affects me!

I haven't been able to wear the splint much. The PT's measured it wrong and the Orthotics Doctor put the straps on the wrong side and they were digging into my skin and hurting me too much. My PT's told us to take the splint back and tell them to correct it but they just said that it was fine and they couldn't do anything with it!! My PT's couldn't believe what they said and told us not to attempt to use the splint at home as it could possibly dislocate my ankle as the spasms are so strong but to take it back to my next PT session and see if they could do anything with it.

I see my Physical Therapist's next Wednesday. I used to see them weekly but haven't been able to go as my grandad passed away not so long ago and I just didn't feel up to going. I was supposed to be going to Great Ormond Street Hospital (we live in the UK) this month for my leg putting in a full leg cast to try and correct the Dystonia but I don't want to go as it scares me too much!! My leg was casted in the beginning of my RSD and it made me so much worse so I don't want to go through that again if I can help it!!

Hopefully the splint will work once it is corrected (if it can be!). Thanks again for your kind words, I really appreciate them and if you ever need anyone to talk to, I am here!
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