So nice to meet all of you, I've learned so much already just snooping around in here. I'm Jeanne, formally diagnosed with RSD in both hands Fall 2006.
Hindsight being 20/20 I think this has been going on longer than that.
In the beginning of 2005 started getting alot of pain and weakness in the hands, went through the joys of electrocution and Ortho diagnosed me with Carpal Tunnel Syndrome. He wanted to operate then but it wasn't in my dayplanner for 2005 so I opted trying to put it off as long as possible.
I had injections in both hands to reduce the swelling on my hands (this is where the hindsight comes in) the shots would render me useless for a few days. It felt like they were broken and soooo sensitive to touch. I have also learned since then how to properly communicate with doctors and really express my pain because when I told him they hurt he said some people have more pain than others. I thought it was just part of the process.
I used to have such a high tolerance to pain, had all 4 of my children naturally, never took days off from work...seriously I chopped wood when I was 9 months pregnant
Last summer I just couldn't take it anymore, my hands were turning into the human claw so gave into the surgery. I had carpal tunnel release on both hands, two weeks apart. Did OK for about a month and then the rest is history. What was supposed to be 2 months off from work has turned into Long Term Disability My physical therapist is the one that actually first mentioned RSD to me. Since then I've been to 2 Ortho doctors, 2 neurologists and my PM doctor (who's the best of the bunch).
I started seeing the PM doctor in January of this year and he gave me my first stellate ganglion block at my first appointment with him. He has always been aggressive with his therapy and talked about SCS from the start.
I had 2 blocks withing a few days of each other and absolutely no pain relief. When I had the second block my arms got really mad and fought back, terrible aching pain and ice cold. I was put on blood pressure medicine to help with the temperature and we decided no more blocks.
Febuary it spread to both feet, they had been getting numb for a couple of months but the burning and aching pain literally happened overnight. So I was sent for more tests to make sure we weren't chalking everything up to RSD. That's when I was told Cold RSD and SCS was off my list of options.
I'm very stubborn with this little monster inside of me. I try to take short walks daily and have upped my visits with my therapist, but this is such an isolating illness. The Spoon Story was so simple but so true.
I'm trying really hard to find a way to accept this and fight it at the same time....to have RSD be a part of me without it defining me.
So thank you all for being here and sharing your experience, strength and hope....it helps me more than words could ever explain.
Jeanne