Living with CRPS – My Story

25th March 2019

I’ve spent 35 long years dealing with and suffering from Complex Regional Pain Syndrome. I’ve got 35 years of experience to try to write about, so this will be a rather condensed version.

Think back to 1984 if you were around then. New Zealand was a very different place. I was 14 years old, 6’ 3” and on a school trip to Waiheke Island, which is just off the coast of Auckland. As I was so tall, I was naturally on the school basketball team. I was playing for our school soccer team before rushing onto the basketball court. A simple game of school basketball was about to change my life forever.

I can’t remember how far into the game we were, I jumped to block a Waiheke player, as I came down, I rolled my right ankle all the way around inwards. That split second changed my life now as I know it. In that split second all my dreams and hopes I had for the future were gone. In that split second, I had no idea the hell that was coming for me and the personal cost. Little did I know that CRPS would steal my self-worth, my confidence, my ability to have some sort of happiness in my life. CRPS took it all.

I spent the following years seeing a number of medical professionals who had their own opinions which turned out to be all wrong.  It was 8 long years of being jabbed and manhandled before the problem was found in my right ankle. In 1989, I was first diagnosed with CRPS, by this stage, I was informed, that I had already it for 5 years. 2 years later at age 21 I had my first surgery and I would go on to have another 5 over the years trying to fix my ankle before I had a below the knee amputation in 2005.

During all this time I was also dealing with CRPS, crying and screaming in horrific pain, enduring endless nights of sleep, with huge amounts of pills that I would learn later on were doing no good to my body. Watching how CRPS was digging deep in my soul, trying to kill it, trying to kill my mind and my will. Days of not knowing what was going to happen that day, my anxiety levels going through the roof. CRPS was trying to take full control.

2019 will mark 35 years of living and dealing with CRPS and 14 years since my amputation. The battle rages on with living daily with CRPS. The battle of my own mental health, as depression once again drags me down a dark hole, all due to the full effects of chronic pain and CRPS. Days of asking ‘why am I still here?’ Days of thinking maybe I should end it all so I don’t have to deal with CRPS pain anymore and just fade away as just a memory. Wondering if I will ever get a decent night’s sleep again, will I ever get a healthy mind back, will my confidence ever come back to where I use to be.

So many questions, no answers.

Will, I ever stop having days where the slightest movement hurts like hell? Will I ever escape this depression that haunts me?

I’m so over living my life like this, because it’s not a life, it’s just existing. I’m truly at the end of living my life like this, is it someone else’s turn now?

J