What It Feels Like to Dance With the CRPS Monster

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Complex regional pain syndrome (CRPS) is consuming. It changes your life. It affects simple tasks and things we all take for granted. I get asked a lot to describe what the pain is like. Whether it’s doctors, clinicians or even people who just want to know. So here goes.

It’s fire. And it’s ice. How can it be both? The fire is literally fire. It is hot and it burns. It is standing in the middle of a fire not being able to get out. Ice burning is a little tricker to explain. It’s like reaching your hand down into the bottom of an ice box and digging around for that last bottle. The half melted ice and that icy cold water. But if you leave your hand in too long, it hurts. That’s cold burning.

It’s crushing. Your bones are in a vice and someone continues to tighten. It feels like your bones are breaking into a million pieces. The grip gets tighter and tighter and won’t release.

There are bugs. Crawling all over your skin. Wasps that sting you, but no matter how hard you try, you can’t shake them off. You search for them but you can’t see them. But they feel as though they are there.

Knives tearing at your flesh. Scratching deeper and deeper but there is never blood.

A simple touch sends you into a pain spiral. A light gesture causes searing pain. Whether it is a person who accidentally bumps you, a breeze that blows too hard or the material of your clothing, it’s like being hit by a bus. A tissue hurts. A stray hair hurts. I roll my pants up on one side to lessen the effects. I get asked a lot if I know my pants are rolled up…if my legs are cold because I have to wear shorts all through winter. I always get interesting looks when I wear my jeans. I cut a leg off them. It’s easier then trying to roll them up and keep them there.

The pain radiates through the rest of your body. Your hip, your back, your neck, your jaw, your teeth, your arm, your hand, your fingers and thumb.

Moving hurts. But you have to move. You can’t stay still because that won’t help. You need to move. You push through the barrier and try and keep your face from matching what you feel inside.

It changes the way you look. The medications can have side effects of weight gain. The skin looks different and flakey. The hair grows uncontrollably. Contracture pushes and pulls your body out of alignment. The nails grow way too fast. But you can’t shave it and cutting your nails is torture.

Twitches and spasms are now a normal occurrence. It hurts. It feels like your muscles and ligaments are being pushed through a paper shredder. If I push too hard I feel this awful sensation and all of a sudden my head will sharply jerk from side to side. Sometimes it lasts for a second, other times longer. The more I fight with it, the worse it becomes.

CRPS is a monster. It shows no mercy. It doesn’t care if you have plans or deadlines. It doesn’t care that you are exhausted and just want to sleep. It comes out of nowhere like a figure hiding in the shadows of a dark alley. It is relentless. It shows you how strong you are, even when you don’t feel strong. You have no choice but to face the demon head on.

It’s unpredictable. We can’t predict what will set it off, sometimes the simplest of actions can cause an intense reaction. What I did last week, chances are I can’t do them this week. It doesn’t make sense. All you can do is fight the monster. Try to duck when it throws punches and do what you need to do, in order to cope with the pain when the punches collide with your body. Don’t give up. Stay in the fight.

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