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 07-23-2009, 10:19 PM #13
baseballfan baseballfan is offline
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Join Date: Mar 2009
Location: California
Posts: 94
15 yr Member
baseballfan baseballfan is offline
Junior Member
 
Join Date: Mar 2009
Location: California
Posts: 94
15 yr Member
Default RSD effecting family life

Hi,

This is Kate's husband Steve to tell you how RSD has effected our family life.

Hello, everyone...

What I feel the most is just unending frustration. We never know from one day to the next how Kate will be feeling and it makes it very difficult to make any kind of long-range, or even short-term plans. The things that we do take much longer than they used to simply because Kate's energy level is much lower than it used to be. It is an emotionally draining feeling because there is no end in sight, and it often seems that the whole problem itself is very hard to define.

I often feel that with RSD the doctors are chasing after something that they can't really find, and it drives me crazy. I want them to FIX IT and they don't offer a lot of hope.

Kate can be quite sensitive to touch, sometimes even a light touch can cause pain. This can really limit our closeness, depending on how she is feeling on any particular day. We had to buy a lot of new clothes for her, things that are looser, more comfortable, like sleeveless shirts.

I try to be supportive as much as possible because she often feels sad and frustrated. Sometimes she just wants a hug or needs to have a good cry. I try to be there at those times. I'd like to be around the house more, but I have to work.

I worry about my own health...I'm working to keep up the medical insurance, and I feel the burden all comes down to me; I fear what will happen if I suffer from some health problems.

I guess if I had to summarize everything, it is just not knowing the future and where this is all going that I feel is most troublesome. I am determined to hang in there. I've faced worse, and I'm still here.
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