A MUM living with a condition so painful it’s dubbed “suicide disease” begged doctors to amputtate her leg – and now has her life back.
Nicky Neil, 29, became a prisoner in her own home, unable to leave due to the pain in her leg caused by complex regional pain syndrome.
CRPS is long-term pain, usually confined to one limb, that is so intense that it is scored as being worse than the pain of childbirth in some instances.
It can be triggered by an injury or post-operation, but sometimes, as in Nicky’s case, there is no clear cause.
Nicky, who lives in Caerleon, South Wales, says: “I’ve been bed bound for five years and left me unable to drive my car, or do all the things I wanted to do with my son Robbie, who is nine.
“Asking them to amputate my leg was the best decision I ever made.”
Nicky was diagnosed at the age of 16 after waking up one morning with sudden pain in her left leg.
She says: “I’d been perfectly fine before that. But this particular morning I woke up with pain all down my leg.
“Mum thought I’d been sleepwalking and had knocked it, so we waited a few weeks but it didn’t get any better so I went to the doctors to get it looked at.”
My leg doubled in size
Nicky was told she had CRPS, which the NHS says can often be misdiagnosed or not recognised. It is a poorly understood condition for which prevalence is unknown.
Nicky says: “I was in agony with it. Over the next six months it didn’t get any better.
“My leg and ankle had doubled in size, it had gone blue and purple.
“If I was to stand on it and put my full weight on it, it felt like my foot was going to burst.
“It was mostly in my left leg, although it was sometimes mirrored in my right too.”
Nicky says she was on crutches from the ages of 16 to 19, before her symptoms settled for a couple of years. Then, they came back with a vengeance.
I slept in the car for the night because it was too painful for me to walk to my door
Nicky
She says: “I was taking nerve pain medications, morphine too, and I was taught breathing techniques to try and deal with it.
“But it stopped me doing anything, it took over my whole life. I could only leave the house a couple of times a week, as it took me days to recover from going anywhere.
“I was bedbound five years and I couldn’t do anything with Robbie, which I felt so guilty about. I had to stop working too, from my job in project management.”
It was spring 2022 when Nicky finally decided to take action after a night out with friends ended disastrously.
She says: “I couldn’t get out of the car and walk up to my front door as I was in so much pain. So I had to sleep in my car for the night, and then get help in the morning.
“At that point, I just couldn’t take it anymore and knew that I had to do something about it.”
Nicky had previously been offered a spinal cord stimulator, which may be recommended if painkillers fail to work.
A device is surgically implanted under the skin, sending mild electrical pulses to the spinal cord and helping to reduce pain.
But then Covid hit, and the appointment was postponed. During Covid, Nicky’s leg became so useless that it was decided the surgery wouldn’t be any help, Nicky says.
So instead, Nicky begged doctors to amputate her leg.
I got my life back
Amputation is considered controversial and a last resort for CRPS because of the lack of evidence to support that it is a cure, and because the conditio can spread to other parts of the body.
But doctors agreed, and Nicky had the operation in July last year at the Royal Gwent Hospital.
She says: “I wasn’t nervous about having the operation at all, as I had so much to gain.
“I wasn’t focusing on losing my leg, it was more that I was going to get my life back.”
The operation went well and Nicky was allowed home after three days in hospital.
She says: “It was the best decision I’ve ever made. There hasn’t been a single second where I questioned what I’d done.
“I came off all my pain medications straight away.”
Nicky feels like she can finally be a proper mum to Robbie, doing the school run and taking him to hobbies.
“Life is just beginning for me,” she said.
“I’ve missed out on so much with Robbie. I feel like I can be a mum – and a person – again. I’m back working full time and I go to the gym six days a week.”
Nicky has had a prosthetic fitted and has also attended Amp Camp in Tenerife, a fitness retreat set up by amputee Ben Lovell to help other amputees.
Ben lost his leg in 2017 through an undiagnosed blood clot and since then has been determined to try and help other amputees.
Nicky said: “Amp Camp is fantastic. It’s so much fun and great to meet other amputees.
“I now lead a full and active life – compared to being bed-bound for five years. I volunteer for our local church too.
“I may have lost my leg, but I now have my life back.”
Sarah Carter is a health and wellness expert residing in the UK. With a background in healthcare, she offers evidence-based advice on fitness, nutrition, and mental well-being, promoting healthier living for readers.
