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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Ben is correct, once you are infected with RSD via foot, arm, etc...your life will definitely never be the same. I'm with Ben, RSD Sucks!!!! My RSD started in 2000 via my feet and spread through both legs then into my lower back. We thought that it was contained at that point because I was on a certain amount of medications as well as having a spinal cord stimulator. Well that lasted until early 2004 in which the disease spread to my upper body and limbs. I also started having attacks on my internal organs (this is a code blue for RSD, the very worst at least for me) At times, I thought I was going to die. My pain doctor was able to get them under control a little bit better by adjusting my meds and implanting a morphine pump. This is where I am at today along with 24/7 pain and depression to name a few.

[B]So what is MY life like with RSD?[/B]

1. I usually can only sleep in my bed with my husband for 1 or 2 hrs because my back and legs/feet hurt so bad. Like Ben, I too am up all hours of the night.

2. Once my husband goes off to work, I adjust myself in a recliner with pillows and sleep on and off sitting up because of the medication I am on.
My daughter or husband (whomever is home) will help get me into a shower chair so that I can take and bath however this is a major chore because it takes almost 2 hrs for me to complete including getting dressed. My daughter does my hair.

3. I usually eat crackers or other items that someone will cook and leave for me until the next person comes home. I also have access to bottle water to drink.

4. I used to be able to get around with a cane but now I use an electric scooter. When I go to the doctor, I have a regular wheelchair in our car to use. When I started getting really bad in early 2005, we sold our 2-story home and built a ranch so that I would be able to get around.

5. We sold my car because I can't drive anymore so I feel like I lose my independency. I cried as I watched the guy out the window drive it away. You just can't get up and go somewhere anymore when you want to. You always have to rely on someone else to get you to the doctor or to the store.

6. Family: They are also hurt by what has happened to me. My son was 12 when all of this started and he just turned 18. He is my youngest and will be leaving for college next week. I feel like I let him down the most because I could never make it to his games. My daughter is our oldest (20) and she decided to stay home and commute to school. I'm glad that she is still here. I also thank God for my wonderful husband because he has been so very good to me but I can see on his face that he worries about me.

7. I watch T.V. but I normally fall asleep. Every time I try to read something like a newspaper or magazine, it takes me longer to read because I can't comprehend it as quickly as I used to. Also, when I am speaking to someone, I will forget a word or words to make up a sentence which is very frustrating to me.

[B]Things I used to do:[/B] Walking (Exercise/In General), Canoeing, Horseback Riding, Climbing, Driving, Shopping, Going to the Movies, Vacations, etc..

[B]Things I do now:[/B] Sleep, Watch T.V., Sleep, try to read, Sleep, try to be a good Mother and Wife.

I really enjoy having this board available because you always have someone out hear to go to that is feeling the same way you are.....God Bless You, Cindy & Ben
Maria :angel:

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