My life as I knew it came to an end when a doctor told me “you have reflex sympathetic dystrophy”.
I had heard the term before, but couldn’t for the life of me place it. I ended up googling it on the bus ride home, and realised that reflex sympathetic dystrophy is the old term for complex regional pain syndrome. I started crying on the bus.
When I was eighteen my best friend began suffering from an unknown illness that baffled every doctor she went to. She had spasms, extreme pain, and serious mobility problems. I watched her go through this hell and saw it nearly destroy her. In researching what could cause this to happen to her, I came across reflex sympathetic dystrophy and CRPS.
On Halloween of 2015 I was walking home at night and it was pouring rain. Wearing high heels (as usual) I tripped in a pothole filled with water and sprained my ankle. By December it seemed to have healed, but my knee suddenly gave out while I was walking. It happened more and more frequently until I needed a cane, and eventually in February I required a Walker.
(my leg on a bad day)
I didn’t get a diagnosis until June, and didn’t get physio until September. The optimum time frame to reverse Crps is under three months. I qualify for a measly five physiotherapy sessions under the wonderful free health care of Ontario. To beat back CRPS it is recommended to do physio five times a week for at least a month.
On top of CRPS I also have fibromyalgia and depression. My CRPS symptoms are extreme pain, swelling, colour and temperature changes, sensitivity to touch and sound, stiffness, weakness, and now dystonia. Dystonia causes abnormal muscle contractions, postures, and spasms (among other things). I’m applying to get funding for a wheelchair now, but it’s taking forever.
I don’t want to be treated like a mess, I want to remain independent (as independent as you can be on social assistance) I want to be seen as more than my disorders.