I acquired CRPS after removal of a large mass in my left ankle, likely present since birth.
It was discovered months after completing a 200-mile bike ride. Post-surgery pain caused the recovery room walls to spin for three hours. Being an athlete and an overachiever, I was determined to bounce back quickly as I had from past setbacks.
I armed myself with books, videos and even attempted a knitting project. These all sat untouched as I struggled to cope and distract myself from the vice grip and freezing pain in my foot. I urged my big toe to move and forced my swollen lump of a foot onto the floor, nearly faint with pain. Even a blanket, sock or lukewarm water could not be tolerated on the foot initially. At the post-op appointment, the doctor’s assistant said patronizingly “Still in a wheelchair are we?” Wheelchair and car rides were miserable due to the road vibrations.
When I could handle physical therapy – thanks to a nerve block medication my wise friend urged me to get started on – my PT chided me for not weight bearing enough. She discredited my pain level when I was seeing stars. She treated my case as a routine ankle surgery, and did not recognize my symptoms of CRPS.
Heavy doses of Vitamin C, L-carnitine, toe wiggles, and deep breathing prescribed by my doctor helped, but it quickly became clear that more intervention was needed. An anti-seizure medication is what helped me endure therapy. A pain specialist, convinced I had a blood disorder, warned me I could bleed to death with a spinal nerve block. Then wondered why I was anxious! With each doctor visit, my anxiety level was duly recorded in her chart.
Specialists could not understand how I could cry out in nerve pain one minute and be fine the next. Some assumed it was something I was doing or not doing. If my bandage is tight, change it. If my foot is cold, just put a sock on it. Thanks to my persistent personality, low tolerance for suffering and good medical connections, my surgeon diagnosed me early on.
Due to my networking in the health care field, I found expert help and was willing to pay for it. Within six months I was back to doing 60-mile bike rides and have since completed several triathlons. I thank God every day for my second chance.