A teenager suffering from a ‘debilitating’ disease that makes it feel like his limbs are submerged in boiling water has launched a GoFundMe campaign to help raise money for ‘life-changing treatment’.
Jack Puttock, 18, has Complex Regional Pain Syndrome (CRPS), which is also known as ‘suicide disease’ due to an increased risk of suicide among sufferers thanks to the unbearable pain.
This link was explored in a study published in the Korean Journal of Pain last year, which said many patients ‘have been known to be at risk of suicide, due to severe pain and its comorbid conditions’.
The disease is considered to be the most painful chronic pain conditions, reaching approximately 42 out of 50 on the McGill Pain Scale – worse than childbirth or the amputation of a finger or toe - according to charity Burning Nights.
Puttock has lived with CRPS for the last two-and-a-half years following a blunt trauma injury to his right arm in early 2019.
He explained on the fundraiser page: “This caused within a very short space of time pain like no other that felt I was on fire – it was debilitating, scary and frustrating. It was dismissed for six months, and I was told by a doctor that ‘It was all in my head’ and that ‘I should just get on with life’.”
Puttock’s condition caused him to have seizures, loss of consciousness, severe headaches, GI Tract Dysfunction and loss of function in his right arm.
However, he said the ‘mental and emotional’ impact that his illness causes is a never-ending ‘cycle of distress’, adding to his fatigue and pain.
Puttock, who is from Arlesey, Bedfordshire, has tried a number of treatments but none have had a ‘positive effect long-term'.
“I spent months on opioid drugs that made me tired, sick, and ultimately didn’t actually touch the pain,” he said.
“In conjunction with this, I tried medications that weren’t even licensed for the condition but were tried as they had some form of potential pain-relieving symptoms. I also tried more invasive methods such as a Lidocaine Steroid Injection which caused the pain to get worse and two nerve blocks that bought my pain down for a limited period of time, which has since returned at an even greater level than ever before.
“The pain is that bad currently that I have to have sedatives to help me sleep, which still only allows me to achieve between 2-3 hours of sleep a night.
"Prior to this, I would have an hour if I was lucky which did and still does make daily life a struggle because I am constantly fatigued, regardless of how rested I am.”
With many treatments unavailable through the NHS, Puttock is now hoping to raise £50,000 for what’s known as ‘vagus nerve stimulation’ in the States, having booked himself in at the Spero Clinic in Fayetteville, Arkansas, in 2023.
He said: “Unfortunately, the cost of treatment is extremely expensive, due to the intensity of it and how specialised it is. Private Healthcare Insurance will not cover this treatment, so my last resort is fundraising.”
According to Bedfordshire Live, the treatment costs £37,000, with an additional £13,000 needed for flights, accommodation and visas. So far, he has raised more than £3,000.
Puttock told the outlet: “This treatment has the potential to change my life. I know it's a large sum of money but no matter how small the amount, it helps get me to my end goal of living a pain-free life."
Puttock recently completed his first semester at Anglia Ruskin University, where he studies international business management, and has also started a web agency building website with a friend as a tradition nine-to-five job isn’t suitable for his health.
"Many people with CRPS can't work due to the medication and pain, and I didn't want that for me,” he said.
“I know my limits and I stick within them. But I'm determined to do something positive with my life and not dwell."
Puttock said that if he had been diagnosed sooner the outcome would have been far different, adding: “It’s very easy to wonder what-ifs but I need to move forward and do something with my life.”
To donate to Puttock's cause, click here to visit his GoFundMe page.
Featured Image Credit: GoFundMe/Jack Puttock
Jess Hardiman