A 20-year-old woman from Leeds, West Yorkshire, has spoken about her decision to have her right leg amputated after living for years with a condition sometimes called the “suicide disease” because of the severity of pain it causes.
Jess Burkinshaw has lived with juvenile idiopathic arthritis (JIA) since she was 16 months old, when she developed swollen joints, fevers and severe pain, and stopped walking and crawling. At 15, the pain in her right ankle worsened dramatically. She initially assumed it was a bad arthritis flare-up, but was later diagnosed with complex regional pain syndrome (CRPS), a condition that causes severe, persistent pain and can follow an injury or damage to the nervous system.
“I’ve never known a life without pain,” Jess told creatorzine.com. She described the pain at its worst as feeling as though she was “burning alive” one moment before being “thrown into an ice bath” the next.
“When I was around 14, I just couldn’t ignore the pain anymore; it was taking over my life,” she said. “We then learnt years later that the pain was due to my ankle and foot being severely damaged from my arthritis. On a daily basis, my pain level would never drop below a seven out of the one-to-10 pain scale. It felt like my whole foot was bruised and it was continuously being stabbed, burned and electrocuted.”
The condition disrupted Jess’s education and social life. She sat her GCSEs at home because she was in too much pain to leave the house, and missed over half of her final year of school. “I had very few friends as I wasn’t there seeing them in person to keep the friendship going,” she said. She was unable to wear a sock or shoe because of her CRPS, meaning she could not go outside during winter. At her lowest point, a few years ago, she did not leave the house for eight months.
Jess said the illness and the medication used to treat it also affected her mental health. “I have been on so many different medications to try and combat the pain, but no one ever seems to warn you about the effect they can have on your mental health,” she said. “I was depressed, anxious and experiencing hallucinations due to the medication I was taking mixed with my severe lack of sleep due to the pain.”
She tried an ankle fusion and a spinal cord stimulator trial, but neither relieved her pain. After more than two years of discussions with surgeons, she decided to go ahead with amputation of her right leg, and underwent the operation in April this year.
Doctors differed on whether amputation was right for her given her young age and the nature of CRPS. Jess consulted three surgeons, two of whom supported the procedure, while one urged more caution. The decision took over two years to reach.
“An amputation may seem like a worse outcome to most people, as they are used to their limbs being pain-free and functional,” Jess said. “I think if they felt what it’s like to be in horrible pain 24/7, even just for a day, they would be much more understanding and would beg for anything just to lessen the pain even a bit.”
She accepted the operation might not work. “I’d either stay in the same amount of pain I was already used to, or I had the chance of it improving,” she said. “When I was finally put on the waiting list for my amputation, I just felt so much relief.”
Jess is not yet using a prosthetic limb but had a cast made for one last week. She has been working with physiotherapists and using a PPAM aid, a device that helps lower-limb amputees practise walking before receiving a prosthetic. She now uses social media to raise awareness of disability, accessibility and life with chronic pain.
“My quality of life has improved so much, mainly because I’m in less pain,” she said. “I can leave the house more, I feel more independent, I’m sleeping much better, and I feel more like myself.”
Looking back, she has no regrets. “It was definitely the right decision, no doubt about it,” she said. “I had full trust in my surgeon, and I knew it was the best way forward. 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.”
