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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hi GatorGirl27,

I was diagnosed with RSD in both feet, legs, and lower back in Dec. 2000. My doctor told me that RSD would change my life and that I need to know that there will come a time when I will no longer be able to work. He also told me that the sooner I accepted the fact that I have RSD, the better. During that time, I was working 50hrs a week. I knew then that I needed to slow down because I was in a lot of pain. However, I was moving up the corp. ladder and did not want to ruin my opportunity for advancement.

In March 2002, I received my first Spinal Cord Stimulator. I did well with the SCS trail and was able to wear it at work to see if it helped me. They set the SCS box up so that I was receiving stimulation from my lower back all the way down into my toes on both feet. This gave me enough relief to get through the day at work until I could get home and take my pain medication. However, it only lasted for a year or so. In March 2004, I had to have the SCS box replaced due to bad leads and the box was not functioning properly. Even though I had an SCS box, I still needed various pain medications. I was in so much pain after working all day that all I wanted to do was to crawl to my car because I could barely stand up.

In Aug. 2004, I was diagnosed with Systemic RSD. Basically, the RSD had spread through my entire body. My hands, arms, feet, and legs are swollen the majority of the time. The worst part of it is when the RSD attacks my organs. It is so very painful and nothing really helps it, so I have to keep moving around until the pain subsides. I missed a lot of work due to my RSD in 2004. In Sept. 2004, I went to work one morning only to be transferred by ambulance to the hospital. After being admitted to the hospital, I knew that I would not be able to return to work ever again. I filed for SSI in Sept. 2004 and was approved two years later in Sept. 2006.

I must agree with Patti, apply for SSI now so that you will become eligible in two years. Even if you think that there is some possible chance that you will continue working, at least you can have the clock ticking until your SSI will be available to you. When my doctors all told me that I would need to quit my job, it was one of the hardest things for me to accept. However, now that I have been retired for 3 years, I know that I made the right choice. I have some good days but I also have really bad days as well.

As for your question, "how do you balance having a "normal" life when you have RSD?" I feel that a "normal" life cease to exist once you are diagnosed with RSD. I have had to mask several sacrifices and adjustments. I used to drive a brand new Acura TL. We had to sell it because I no longer was able to drive and we could not afford the payments. This is just one example of how my normal life style changed forever.
Good luck to you and God Bless…………Marie





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