I thought Id share some positive info. My recently turned 14 year old has been diagnosed with CMP for a long time now. The poor girl starting suffering chronic pain at 8 years old. March 21 our lives drastically changed when she became bed ridden with intolerable pain after track practice. Many ER visits, therapy, specialists at some of the best hospitals could not figure it out and we knew this was something more and much worse than a CMP flare. She was unable to walk and began using a wheel chair, which hurt to sit in. Laying down hurt in her back, ribs, neck, shoulders and hips. I wondered if they were missing something on her MRI and xrays that she injured that day at track practice. We decided to go to Cleveland Clinic for help as I was struggling to care for her at home (showers, dressing, etc). She has been diagnosed with Complex Regional Pain Syndrome. This is very different from myofasical and other chronic pain. This is a disorder of the central nervous system and the vascular system gets involved and the cycle of pain continues to amplify. It settled in her left hip and low back and her leg began to turn purple and red and swelled to 3Xs its normal size. This is due to the vascular constrictions caused by CRPS also knowns as RSD. This disease ranks as the highest known pain on the McGills pain score above child birth and amputation at a 42 out of 50. The continued amplification increases the pain as time goes on. Now for the good news. Thanks to our trip to Cleveland it was caught early and she was admitted for 14 days in a rehab hospital for an intensive therapy program. The program sounds cruel as it involves intense excercise, but it works,at least for pediatrics who respond well to this. She was barely able to stand when she went in but is now walking and almost with normal speed. It is still painful and will be perhaps forever, perhaps years or only months, but she can now function and has learned from the program how to manage and live with pain. She will continue therapy 3X a week for the next year which includes PT, OT and psychiatry all specialized for treatment of CRPS. The additional good news is, that while admitted she was also treated for her myofascial issues and received some of the best care ever for this and they have been training her some self treatment techniques such as accupressure for at home. I wanted to take all these fascial knowledgable therapist home with me. I asked how they knew so much about the fascial system and they said that all the physiatrists on staff have them take special courses and continued courses specific to fascial treatments and they use it not just for patients with CMP, but for all patients, especially amputations, spinal cord injury, cerebral palsy. So although it was scary be admitted at first, it was one of the best things to have happen as we now have the best possible care for her chronic pain. She has improved from a 10 out of 10 to a 5-6 in her hip and back and is functioning fairly normally. We expect and hope for continued improvement with her continued care. Good luck and best wishes for all to find a great specialist and an excellent therapy team.. there is HOPE.
Posted on: Fri, 11 Jul 2014 12:37:53 +0000