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)

 
 
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Old 04-21-2009, 04:49 PM #6
daniella daniella is offline
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Join Date: May 2007
Posts: 2,998
15 yr Member
daniella daniella is offline
Magnate
 
Join Date: May 2007
Posts: 2,998
15 yr Member
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Hi I can relate and know how lonely it makes this. I have found some people in life will be there and some will not even with all the education in the world. I try to focus on the support I do have and realize the ones who are not there have issues of there own they can't be there for others. It is still hard but a true friend and family are there through good and bad. I have people like mom who will read and educate themselves and some 2 years later who ask me what I have but before that tell me why I am not better cause I am not doing what they feel for treatment. I think that if you can show them what some people rsd looks like with the swelling and color and the pain index being worse then some cancer it may put more of an image in what you are going through.There is also a couple you tube videos that talk about the symptoms and asks the person to imagine the burning like you are on fire or how clothes can feel like torture and that is how rsd people feel and I think that is a good thing for people to see.Simple every day things that many of us can't do like wearing an item of clothing on the rsd area. Often I feel with health problems people don't know what to say when in reality I know for me all I want is a call to say hi and check in. Even a little note means the world. My moms friend made me chicken soup when I first got this and I swear it warmed my heart and made me feel so love. Hang in there
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