Each November, Complex Regional Pain Syndrome (CRPS) patients and organisations raise awareness. In support of this initiative, I’ll be writing from my experience of the syndrome.

When our bodies are functioning normally, pain is an essential part of our healthy well-being. Leprosy highlights what happens when pain is no longer present, Dr. Brand describes it as “when that nerve cell falls silent, it no longer warns of danger, and the painless person quite literally destroys his or her own body.” Conversely, CRPS is pain without volume control, the brain misfires and constantly sends pain signals. For example, as Dr. Brand explains “Apart from this volume switch through which sensations pass, I could not wear wool or other coarse clothing; my body would incessantly remind me of its scratchy presence and I could hardly concentrate on anything else.” This explains how my clothes feel in a CRPS flare-up. 

A flare-up can be set off by perceivable elements like clothes or invisible ones like changes in air pressure or temperature. When my CRPS flares, the pain is intense. As described by RSDSA “The level of pain is measured as one of the most severe on the McGill University Pain Scale.”

Whilst it’s name is new, CRPS has been around for centuries. It’s been observed in the diaries of war doctors and in sports journals but until recently it’s been clouded in mystery. In the last year, doctors definitely connected the pain to the central nervous system misfiring. This finally explained why any attempts to relieve my pain in my wrist, where the pain is felt, have failed. Medications which affect the brain chemistry, such as the antidepressants I’m on, have long been used to alleviate some of the symptoms but there are no standard treatments, each is customised to what works for you. This breakthrough in the source of the pain has all of us in the CRPS community excited that new medications and treatments will follow.

When I hear friends complain about pain, I often wish they’d appreciate this vital function of their body and engage with it to find relief. I took it so for granted when my body behaved normally. Now a minor injury, for example a sprained ankle, is a major medical incident where we work to get me out of pain without too much rest so my CRPS doesn’t spread. I can’t be put in a cast in case my brain starts to misfire in another area. I have to work with my biokineticist to get it moving sooner even if the healing takes longer, again to keep the brain functioning correctly. 

When you consider the extremes of pain, leprosy or CRPS, I hope it helps to put your pain in perspective and perhaps even appreciate it. Whilst no one wants to be in pain, the alternative is far worse. As I read the stories of the damage leprosy does, I became grateful for even my CRPS, my nerve signals may be loony but sensation is such a gift. 

How do you keep your nerve signals healthy and avoid CRPS? There is no definitive way to avoid it but studies have concluded 500mg of vitamin C daily for a couple of weeks after injury or surgery can substantially reduce your risk of this rare syndrome.

Building awareness is essential to increasing understanding and improving diagnosis. I’m surrounded by such an amazing community, locally and abroad, who have taken the time to understand me. Sharing #CRPS articles and facts is one of the ways you can help grow the community of understanding. You can share it by forwarding this article or sharing posts on social media.