Hi everyone,
I was diagnosed with RSD/CRPS about a year ago. I joined this forum and read every post and every article online I could find. I also did extensive research on medications that relieve the pain. (so far none for me) I want to thank everyone for being so open about living with RSD/CRPS and how it affects you and what you can do to help live with it.
My story is long so I will give the shortest version for now. My foot was crushed by a 17lb metal box, my injury healed but my pain was still severe and my leg was sweating. Shortly after that my ankle started radiating burning pain along with my foot. I was afraid to tell anyone, I felt crazy! By the time I was diagnosed it was all the way into my calf. A Dr that preformed a EMG test diagnosed me. I was in disbelief so I got another opinion. All in all I've been diagnosed by 6 Doctors including the insurances IME. So it was time to accept this is what I will need to deal with.
My whole life was based around being athletic even my job was very physical. So I fell into a deep dark depression while I battled with myself about how this can't be happening to me, constantly hearing "I'll never" over and over again in my head. Stress is a killer for RSD!

Unfortunately I was treated by a Dr that had his license revoked and was prescribing me expired medications. He did two nerve blocks on me, the second one caused a spread into my thigh and hip. His goal was to do a SCS and he did everything he could to get me to that point. He stuck a 75mcg fentanyl patch on my chest after the nerve block, I hadn't taken a single opiate at that point so I overdosed (thankful to be alive) After doing my research and finding out he was responsible for the death of two women and shouldn't be practicing medicine I switched doctors. I ended up on a 25mcg fentanyl patch despite my overdose smh.

My nurse case manager was a great "friend" so I didn't realize how much danger I was letting her put me in by giving her too much control over my own healthcare. I pushed for Stanford, I got it. 6 hours a day of psychological and physical rehab. They switched me from fentanyl to morphine and i couldn't function, then switched me to Oxycontin. It took 90mg a day just to pull me out of withdrawal. I got up to 160mg a day. I KNEW all along this did NOT help my pain! it simply numbed my brain enough to not care about losing all the things I loved so much... My first week on Oxy I told the PT out of nowhere that I didn't feel present in the moment and I was not benefiting from their program. I asked for a detox, a rapid detox at Stanford. IF I had not asked right then and there, I would have leveled out on the Oxy and not asked for a detox.

That brings me to now...I didn't do the rapid detox. I chose an inpatient pain management program. I'm coming up on my fourth week here. Detox is HELL while being at a constant 9. Even with a slow taper I've experienced every withdrawal symptom there is, Ive had a fever for over two weeks and at one point was terrified the detox was going to cause a spread. I started at 160mg of Oxycontin and am now at 30mg of oxycodone and dropping to 0 then I will taper off of xanax. every day is different but everyday I get up, go to gym and pool then do biofeedback and different meetings. Right now in this moment I want to walk out of here!!!

PAIN is unbearable. Im alone, I'm the only one in this program and I shouldn't be. I should be with other people going through a similar battle but this place is a hard sell when you're told you're going to detox from all opiats and learn how to manage your pain by retraining your brain in a way. It sounds like BS. How am I supposed to desensitize by letting someone else touch my leg when it feels like a million shocks rippling over and through my leg.

Who are these people and how do they know this will work!?!?! I came here using a crutch and couldn't bend my knee and today I rode a bicycle! a real one. My pt held me like I was a child, my heart was pounding, I was sweating, my leg was flaring, Im still detoxing, and when he let go I separated all of that from getting in the way of something I love something thats imbedded in my muscle memory and then just like that comes the expression "It's like riding a bike"
Am I paying for it now? yes! but id be paying even more if I never let myself know what my limit really is.

Thanks so much for reading...(feeling so alone in this)