Do you have CRPS?
When this pain in my leg first started, I honestly thought it was something minor—a pulled muscle or maybe a nerve pinched from sitting too long. Really what I remember is that I bumped it into the corner of my kid’s toy table. Something innocuous and forgettable as stubbing your toe, but as the weeks turned into months, the pain only deepened. It wasn’t just soreness anymore. It burned, throbbed, and sometimes felt like a series of electric jolts shooting through my skin. Touching it felt wrong, temperatures felt exaggerated, and even the air against my leg made me flinch. My husband couldn’t believe why something so trivial would have bothered me, but then he saw how my leg had begun to swell. I went to the emergency department, and after an ultrasound to look for blood clots, they diagnosed me with a skin infection called cellulitis. But the antibiotics didn’t help. My pain only progressed. What’s more, the unpredictability of the pain made me anxious and exhausted. That’s when I started reading about a rare condition called Complex Regional Pain Syndrome, or CRPS, and for the first time, the pieces began to fall into place.
CRPS, I learned, is a chronic, nerve-related pain condition that sometimes develops after injuries, surgeries, or even seemingly harmless sprains. It happens when the nervous system misfires and continues sending pain signals long after the original injury has healed. This disorder can cause bizarre changes in color, temperature, and texture of the affected limb. It’s not just a physical condition—it attacks your peace of mind too. What I didn’t realize, though, is that CRPS is part of a bigger family of nervous system disorders, some of which share overlapping symptoms, making the diagnosis incredibly complex. And just like it was for my experience, the diagnosis is often delayed and definitive treatment isn’t begun for many many months.
As I searched google for answers, I came across conditions like peripheral neuropathy and chronic encephalomyelitis. Peripheral neuropathy affects the nerves outside the brain and spinal cord, often leading to numbness, tingling, and sharp, burning pain—symptoms that can easily be mistaken for CRPS. Chronic encephalomyelitis involves inflammation of the brain and spinal cord, which can cause widespread pain, weakness, and sensory problems. The overlapping symptoms between these conditions can blur the lines, and it’s easy for patients to go years misdiagnosed or untreated.
This realization made me appreciate how important it is to see a doctor who specializes in pain. I started with my primary care doctor, who ordered blood tests and yet even more imaging scans to rule out vascular issues and infections. Then I saw a neurologist to assess my nerve function, followed by a pain management specialist who recognized the possibility of CRPS but wanted confirmation from a rheumatologist. Each appointment brought new insights, but also new questions. Sometimes I left feeling discouraged, but I reminded myself that uncovering the truth takes time, especially with conditions as complicated as these.
“Don’t settle for ‘We’re not sure.’ ”
Over time, I’ve learned that asking for help from multiple experts isn’t overreacting—it’s self-preservation. These specialists don’t just confirm or deny a diagnosis; they help build a plan. A neurologist can prescribe nerve-calming medications, a physical therapist can work to restore movement and desensitize the area, and a psychologist can help manage the emotional toll of living with long-term pain. It takes a coordinated effort to not only treat CRPS, but also to rule out or manage conditions like neuropathy or autoimmune inflammation.
Living with pain that doesn’t quite make sense has been one of the hardest things I’ve ever gone through. But I’ve learned that resilience means continuing to search for answers even when the road feels endless. If you’re reading this and dealing with chronic pain, please don’t settle for “We’re not sure.” Keep pushing, keep asking, and see as many specialists as you need. The right diagnosis could be the first real step toward reclaiming your life.
-Anonymous contributor