A woman chose to have her leg amputated aged just 20 after an agonising condition left her unable to leave her home for eight months.
Jess Burkinshaw had lived with juvenile idiopathic arthritis (JIA) since she was just 16 months old, when she developed swollen joints, fevers and severe pain and even stopped walking and crawling.
But when she was 15, the pain in her right ankle suddenly became dramatically worse.
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Jess initially believed she was suffering a particularly bad arthritis flare-up.
Instead, she was diagnosed with complex regional pain syndrome (CRPS), a condition which causes severe and persistent pain and can develop following an injury or damage to the nervous system.
At its worst, Jess says the pain could feel as though she was “burning alive” one moment before being “thrown into an ice bath” the next.
“I’ve never known a life without pain,” Jess, from Leeds, West Yorks, told Need To Know.
“When I was around 14, I just couldn’t ignore the pain anymore it was taking over my life.
“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 debilitating pain took a huge toll on Jess’s education and social life.
She said: “It has massively affected my life in terms of studying.
“I sat my GCSEs at home as I was in too much pain to leave the house, and I missed over half of my last year of school due to the pain.
“I had very few friends as I wasn’t there seeing them in person to keep the friendship going.
“Leaving the house has always been my biggest struggle, as I was unable to wear a sock or shoe due to my CRPS.
“This meant I was completely unable to go out in winter, as the cold was so intensely painful
“My lowest point during my illness was a couple of years ago when I wasn’t able to leave the house for eight months, and I was barely leaving my bedroom due to how severe my pain was.”
Jess says years of crippling pain and medication also had a devastating impact on her mental health.
She said: “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.
“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.”
Jess spent years trying different treatments in a desperate bid to regain control of her life.
These included an ankle fusion and a spinal cord stimulator trial, but nothing worked.
Eventually, after more than two years of discussions with surgeons, she decided to have her right leg amputated.
Jess underwent the life-changing operation in April this year.
She said: “An amputation may seem like a worse outcome to most people, as they are used to their limbs being pain-free and functional.
“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.
“My quality of life has improved so much, mainly because I’m in less pain.
“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 over whether amputation was the right option because of Jess’s young age and CRPS.
She saw three different surgeons, two of whom supported the procedure while another was more cautious.
The decision ultimately took more than two years.
Jess knew there was a risk the operation might not reduce her pain, but says she had reached the point where she was willing to take that chance.
She said: “An amputation was the best shot of having less pain and better functionality with a prosthetic over my other options, and I was willing to do anything to lessen my pain to improve my quality of life.
“When I was finally put on the waiting list for my amputation, I just felt so much relief.
“I was definitely worried that my pain wouldn’t lessen after my amputation, but I knew I couldn’t be any worse off than I already was.
“Id either stay in the same amount of pain I was already used to, or I had the chance of it improving.”
Jess is not yet using a prosthetic but had a cast made for one last week.
In the meantime, she has been working hard with physiotherapists and using a PPAM aid, a rehabilitation device which allows lower-limb amputees to practise walking before receiving a prosthetic.
She now uses social media to educate others about disability and accessibility and raise awareness of what it can be like to live with chronic pain.
And Jess has no doubt she made the right choice.
She added: “It was definitely the right decision, no doubt about it.
“I had full trust in my surgeon, and I knew it was the best way forward.
“The relief was a gradual process, as I had targeted muscle reinnervation, which meant the nerves were a lot more sensitive in the first month post-amputation.
“I got relief after about two months.
“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.
“My friends and family were happy I was getting what I needed to help my pain, as they saw how much I was struggling with my pain.”
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