It happened unexpectedly, at the end of a long day of a camp I was attending when I was 12. My foot burst into pain, although seemingly nothing had happened to it. The doctors diagnosed it as a stress fracture, put me in a boot, and sent me on my way. But even after the cast came off, the pain in my foot only grew. It would take over half a year and many botched medical procedures for me to receive my final diagnosis of Complex Regional Pain Syndrome, or CRPS as it’s often referred to.
This happened in 2005, before the Internet was really in full swing, and before research on CRPS was being done, and actually even before CRPS was called CRPS – it started as RSD.
Over the nearly two decades I’ve had CRPS, something that’s always been a thorn in my side is how hard it is to connect with the less than 1% of people who have this disease, and how hard it is to express what we go through . We carry this invisible pain in silence, and in my experience, the medical community has been largely responsible for writing our narrative for us.
Here are a few of the chief symptoms of CRPS that the Mayo clinic lists:
- Continuous burning or throbbing pain
- Sensitivity to touch or cold
- Swelling of the painful area and
- Changes in skin temperature and color
In my opinion, this is the way someone who does not have CRPS describes it. True, our limbs swell and we have burning pain, but what does it actually feel like to have this pain, some of the most intense pain humans can experience ? What impact does it have on our lives, our identities, our relationships, our sense of self? How do we cohabitate with this lifelong condition? How do we overcome? Do we overcome? What is the qualitative nature of living life with CRPS?
My name is Olivia Simon, and this is CRPS Voices. This is a podcast dedicated to telling the stories of CRPS — from people who have it, their families, and their medical providers. You’ll hear stories of triumph and sadness, relapse and remission, discovery and confusion, all from the people who know their story best. All voices are welcome here. My goal is simple: make the invisible, visible by telling the story of how we live with pain.