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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 10-11-2011, 12:18 PM   #1
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Join Date: Oct 2011
Location: Owen, WI USA
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froggsacct HB User
Smile CRPS for 6 years!

I am new to this site so I will try to introduce my issues with CRPS......I am 37 years old, and I used to be very very active!!! CRPS has really changed my life and has added so many twists and turns....

I developed CRPS just over 6 years ago, and in 2006 I got my first SCS for my left leg. It went well for 2 years but I managed to make my wires slip....so in 2009 I had a revision that went great! About a year ago, the CRPS had started spreading to my right leg. (all started in my left ankle) and down to my foot. My SCS didn't go to that foot so I did therapy and injections, new meds and so on. I had to go back to using my cane to walk which made me feel defeated!

In spring of 2010, I started learning to play mandolin and I noticed that I started having bad hand cramps and pain in my elbows! I had to quit playing which again made me feel defeated! Eight months ago, I got a tattoo started on my left breast....first session was just outline of unicorn which had no problems at all. About a month later, I got a horseshoe around the unicorn and he did outline and color of horseshoe....It hurt like hell to be quite honest which seemed weird because I have had 5 other tattoos before that and had minimal pain and no healing issues. Well, the horseshoe got infected, and I lost a lot of color...also my CRPS spread like wild fire throughout my left arm from shoulder to fingertips!!! I had asked my doctor about getting tattoos and he said I could get them anywhere except over my battery pack or the wires.......

I ended up in the ER one night because of chest pain and trouble breathing and terrible pain in both arms.....it was the CRPS and they gave me more meds....like I needed any more! After that incident, my doc said OK to have 2 SCS units....1 for my upper body and 1 for my lower body! 2 weeks before surgery which was September 1 2011, I got a tattoo on my right ankle which seemed fine....not much pain and no infection.....but, 3 days before surgery, half of the tattoo got infected and I lost some ink. 2 days before surgery, I woke up with a severely swollen right leg and I had pitting edema from my toes up to my knees......my doc saw it of course....he told me that I can get that one fixed after my 12 weeks of recovery and that I can get my unicorn & horseshoe finished and then NO MORE!!! I have to get work done in small increments too because he thinks it will help!

To make a long story short, I know a lot about SCS units since I have dealt with them for 6 years now.......I love them both because I can walk a little farther (with my cane of course) and I can play video games with my kids for a while! The sad part is that I am the legal guardian of my 2 yr old granddaughter and I can't pick her up and carry her any more. ....I also get severe touch sensitivity on the scars from my surgery from time to time, and over my lower battery which is at the top of my left butt cheek! Like I said though, I love mine and I would encourage anyone who has CRPS that's spreading or causing severe pain to try it out.......my trials were awesome!!!!

 
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