Originally Posted by Adalaide

Yesterday was my appointment with a pain doctor to confirm my CRPS diagnosis. I went into it scared that he would say something else, but still hopeful that I would finally have my confirmation and validation after 5 years. This is what I wanted, a diagnosis, an answer. I believed it would be what I needed to move forward and nothing more. He didn't even bat an eyelash at my symptoms before saying it sounded like CRPS.

Instead, I was surprised to leave his office with so many mixed emotions it is hard to describe. I am happy to have a firm diagnosis finally after 5 years. I'm also scared and worried about my future because now I'm certain that this is my future. And I'm mad, mad as hell. For 5 years I went to doctor after doctor, sometimes literally begging and in tears in the office for them to help me because I just wanted the pain to stop. They wanted to give me drugs without a diagnosis, called me depressed, said it was anxiety or somatization. Mostly, they dismissed me. Once, I even saw a neurologist and asked him if it could be CRPS. After explaining to him what CRPS and RSD stand for (not a good sign) he told me that there was no way I could fit that profile and sent me on my way. That was nearly two years ago. He could have helped me, and instead he half listened and I spent that time looking for answers again.

I wouldn't have my answer now if I hadn't asked my new neurologist if it could be CRPS. She told me my symptoms could fit, but that this pain doctor she works with is who she sends all potential cases too for diagnosis because he'll see it so much more than her. I have a diagnosis because I spent 5 years fighting, begging, advocating. I don't know how I'm supposed to trust any doctor. On top of this issue, I slipped through the cracks with undiagnosed celiac for over 30 years and the bad neuro misdiagnosed me with a very serious issue I don't even have by not doing the sole test you can use to diagnose it with. I need them, and I need their help, but I don't know where to start to trust any of them to provide anything approaching appropriate care or advice.