My Journey with Complex Regional Pain Syndrome Finding Strength Amidst Chronic Pain
It was a rare sunny day in Seattle in spring 2002 when I joined some colleagues for a game of catch, not thinking much about tossing a football in heels and a skirt, reported by HuffPost. But a fractured finger, sprained wrist, and damaged rotator cuff later, I’d soon find myself in the grip of a rare condition that would alter my life completely.
After my injuries healed, a simple hand wash led me to collapse from pain, marking the start of my battle with Complex Regional Pain Syndrome (CRPS). Known for its intense, chronic pain, CRPS has left my skin hyper-sensitive, my bones feeling perpetually broken, and my nerves so reactive that even the gentlest touch can feel like being stabbed. Over time, the pain spread throughout my entire body, making even the simplest tasks excruciating.
In the two decades since, I’ve tried nearly every therapy available: physical therapy, spinal cord stimulators, ketamine infusions, a structured diet, cannabis, and an array of medications. My medical records now read like a novel, and my family and I have spent tens of thousands of dollars on treatments. Sadly, effective pain management remains elusive, partly because of the opioid crisis, which has made accessing necessary medications nearly impossible, despite the fact that my prescriptions have always been responsibly managed.
Life with CRPS means missing out on precious moments. I’ve had to skip my children’s activities, give up dreams, and turn down invitations. Pain flares twice a month confine me to bed, where I sometimes feel cut off from the world. Yet, I’ve found some comfort in an intensive outpatient program that combines ketamine infusions with physical and occupational therapy, along with psychological support. This approach has helped me manage pain and has introduced me to others facing similar battles, providing a lifeline of empathy and support.
Through acceptance and commitment therapy (ACT), cognitive behavioral therapy (CBT), and dialectical behavioral therapy (DBT), I’m learning to cope with both physical and emotional pain. I’m also coming to terms with my new reality. I may never hike again or wear my favorite heels, but I’m committed to living as fully as I can, refusing to let CRPS define me entirely.
As I work to reclaim pieces of my life, I hope for advancements in pain management and greater understanding from medical professionals. For now, I take it day by day, learning to embrace the life I have and finding strength within myself and my support network.