In what feels like a never ending road trying to put out the pain of CRPS, we are still searching. It is almost the 1 year mark for my 17 year old daughter Maddy and her fight against CRPS. It started in her left knee and after almost 1 year of treatments including 3 months at RIC in Chicago, 5 nerve blocks, countless PT, OT, massage, tens, Micro Frequency Specific Microcurrent, and most recently a 4 week stay at Boston for the Children’s PPRC program where the pain was not in her knee, ankle and foot. After all this, it seems as if it only has progressed. After we came home from PPRC we had such high hopes, her pain as the same but she was so much more functional, running, going to school, attaining social functions and her sensitivity was getting a great deal better. This lasted for almost 2 months. In beginning of Dec, the pain spread to her left arm and shoulder, which was a setback but she is strong and continued on. Because there was no change in pain, we decided to try the Calmare treatments in Rhode Island which meant she had to wean off of Lyrica. During this time she was having really bad side effects which included terrible anxiety, a bad case of the flu, panic attacks and itching all over, all this resulted in a terrible flare which lasted about 2 weeks and during that time she did her pain management program every day. We stopped weaning her off of Lyrica, and for other reasons canceled the Calmare treatments. Just after the flare calmed down, mid January we went to our follow up appointment in Boston. They pushed her really hard and had her do a cartwheel and round off (both cheerleading jumps), looking back this was such a mistake. Coming home on the plane she started to complain of hip pain, YES, sure enough the next day it had spread to her hip. This spread was a real setback. That, along with a new heightened flare led to a total relapse, she is in so much pain, and all her sensitivity is back. She has RSD in her left side of her body now and the pain is out of control. She can barely walk, is homebound. She currently is taking Lyrica, Trazadone and Norico when she is in a flare. It breaks my heart seeing her miss her senior year. Okay, Moving on…it takes all my effort to get her to do her pain management program. We are still doing desensitization in her arm and hip. She sometimes lets me do her leg. We have started PT again 3 times a week and I found a chiropractor who does cold laser therapy and will be doing that too. We went to see Dr. Lubenow at Rush in Chicago today. He has recommended and we have scheduled a 5 day hospital stay epidural infusion for February. He also does Ketemine treatments, so that may be an option for our future. It just doesn’t make since that we are worse off after almost 1 year of battling this or maybe I just haven’t come to terms with this disease yet. No questions….just needed to put this out there. Please keep my daughter in your thoughts and prayers. I hate that this has happen to her.