My name is Tami and my husband was diagnosed with Causalgia/RSD about a year and 1/2 ago. He was hurt on the job from a hard bump to his lower shin. We have had to deal with workmans comp and for those of you who have had to do the same you know it is a never ending battle. Probably as aggravating as finding a Doctor who accually knows what RSD is and how to treat it. My husband was lucky enough to get a Doctor who was familiar with RSD within the first 5 months however workmans comp makes it all as hard as possible to accually get treated. Needless to say we have been waiting for surgury (symphthectomy?) to happen for about 6 months now and it has spread up his entire left leg, his hips, lower and middle back and mirrored to the right shin and foot. I fear that it will have spread too far by the time surgury happens that it won't do any good or worse he will end up with whole body RSD and much, much worse pain from the surgury. We are both terrified of what can happen with or without surgury. He is not in a very good place emotionally and in serious pain 80% of the time. He is on Lyrica and another pain med but they aren't helping much anymore. Meditation, soothing sounds music and light tingly rubbing on not yet affected areas of his body (head, arms, upperback) are the only things that bring a little relief. (at least to a tollerable level) I have been surching for a support group but to my surprise, there are very few and none in the city where we live. After reading some of you member entries I finally understand why. It is just too painful to travel or get up sometimes. I guess I didn't really think about that. My husband has always been extremly hyperactive and always doing somthing. He still tries to do all the things he use to so I never really thought about how much pain he was in. Pride can be very harmful to someone with RSD. Over the past 4 months I have started to see how this dystrophy has really taken a toll on him. Our lives have forever changed. Our relationship has been tested continiously and he is always debating wether he should leave or not. It just crushes me every time he mentions it. I love him so much and feel so helpless. Just the stress of it all gets to be too much for both of us. No one who is not affected by this horible dystrophy, truley understands the devistation it causes. My heart goes out to all of you with RSD and to all those who love you.......We are all hurting.

 

Thanks for listening

Tami62