Woman, 20, Amputates Leg to Escape Debilitating Pain from Rare Condition

A 20-year-old woman opted to have her right leg amputated to escape a life of relentless, agonizing pain caused by Complex Regional Pain Syndrome (CRPS), a condition she has lived with since she was 16 months old. Jess Burkinshaw described the pain as feeling like she was "burning alive" or "thrown into an ice bath" and stated that her pain level rarely dropped below a seven out of ten.

Initially diagnosed with juvenile idiopathic arthritis (JIA) at 16 months, Burkinshaw's condition worsened significantly around age 15 when the pain in her right ankle became unbearable. This pain was later identified as CRPS, a disorder that causes severe, persistent pain after an injury or nerve damage.

The debilitating pain profoundly impacted Burkinshaw's education and social life. She completed her GCSEs at home due to the pain and missed more than half of her final year of school. Social interactions were limited as she struggled to leave the house, often unable to wear socks or shoes because of the extreme sensitivity of her foot. Winter weather was particularly challenging, intensifying the pain.

At its worst, Burkinshaw was housebound for eight months, confined mostly to her bedroom. The constant pain and the numerous medications she took also took a significant toll on her mental health, leading to depression, anxiety, and hallucinations.

After exploring various treatment options, including an ankle fusion and a spinal cord stimulator trial, none provided lasting relief. Following over two years of discussions with medical professionals, Burkinshaw made the decision to undergo an amputation. She underwent the surgery in April.

Burkinshaw acknowledged that amputation might seem like a drastic measure to those unfamiliar with chronic pain. However, she felt it was her best chance to reduce her pain and improve her functionality with a prosthetic. "My quality of life has improved so much, mainly because I’m in less pain," she stated. "I can leave the house more, I feel more independent, I’m sleeping much better, and I feel more like myself."

Doctors had differing opinions regarding the amputation due to her young age and the nature of CRPS. While two surgeons supported the procedure, one expressed caution. Despite the risks, Burkinshaw was willing to take the chance, believing she could not be in a worse situation than she already was.

While she is not yet using a prosthetic, Burkinshaw has had a cast made for one. She has been working with physiotherapists and using a Pneumatic Post-Amputation Mobility Aid to practice walking. She now uses social media to raise awareness about disability, accessibility, and the realities of living with chronic pain, asserting that her decision to amputate was the right one.

"For me it wasn’t a difficult decision to be made; I have a very logical mindset, and it was the only option that could actually lessen my pain," she said. Her friends and family supported her decision, recognizing the severity of her struggle.