'I have condition so painful it's dubbed suicide disease - there's no cure'
A young man's life was left a shambles as he suffered from a mysterious condition that left doctors baffled for four years. Charlie Moore, 21, was forced to abandon his apprenticeship at his dream workplace due to excruciating pain and swelling on the right side of his upper body.
Despite numerous visits to A&E, clinicians struggled to diagnose the cause of his suffering, leaving Charlie feeling desperate. Recently, he was finally diagnosed with complex regional pain syndrome (CRPS), a chronic condition that causes severe pain in the limbs. With no known cure, Charlie's consultant will begin nerve block treatment to alleviate his symptoms. Nicknamed the 'suicide disease' due to its extreme pain, CRPS has taken a devastating toll on Charlie's life, leaving him reliant on £115-a-month Universal Credit.
The freelance filmmaker from Frome, Somerset, is now raising funds to cope with his condition and seek further treatment. Charlie revealed: "I thought the pain would go away - but it became so extreme, I ended up attempting suicide. It just kept getting worse - I ended up having to drop out of my apprenticeship. I'm claiming Universal Credit now, but it pays around £115-a-month. I had to move back in with my family."
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At the tender age of 18, Charlie decided to leave college and embark on an apprenticeship journey with MTV. The video editing apprenticeship, which kicked off in 2020, was set to span two years and saw Charlie relocating from Frome to London. However, during his second year, he began experiencing muscle spasms that evolved into right-sided headaches.
"The pain started off as muscle tension and spasms," Charlie shared. "I remember first going to the GP around this time."
His doctor advised him to manage the headaches with paracetamol and ibuprofen, and put him on a six-month waiting list for an MRI scan with a neurologist. Within half a year, Charlie's symptoms escalated, and his headaches morphed into "muscle-ripping" pain on the right side of his body. He explained: "I mainly get it in my right arm, right hand, it spreads all the way up into my shoulders, neck muscles and my head. All the muscles pull on each other when they go into spasm."
"The pain feels like tensing your muscles so hard, they feel like they're going to rip open from the inside. Mainly, my right hand will feel very ice cold or very hot. I get swelling and discolouration - my right hand was once so swollen, it was almost purple."
In the middle of 2022, Charlie had to abandon his apprenticeship and attempted to work as a freelance filmmaker.
However, he found that his pain often hindered him from completing commissioned work. He recalls his illness reaching a peak after a "disastrous" work trip to Spain.
"It was a nightmare," he confessed. "I was trying to act like everything was OK and normal. But I ended up making a really big mess of it - my pain caused me to drop my camera in the ocean. I lost my equipment - and I was too in pain to film anyway."
When Charlie returned from his travels, steps were taken to move him back to Frome to be with his loved ones. He encountered difficulties getting a diagnosis, and he details how he reached out to his MP and communicated with the head of his GP surgery to obtain medication, such as oral morphine.
In late 2023, Charlie even tried to take his own life due to his excruciating pain — which led him to seek answers at the prestigious London Pain Clinic on Harley Street. "I've been at the Pain Clinic for about three months," he explained, adding, "I went through a lot of blood tests to rule out lots of conditions - like carpal tunnel syndrome."
He was diagnosed with complex regional pain syndrome (CRPS), a chronic pain condition that can lead to intense discomfort in limbs two weeks ago [October 21].
He's undergone physiotherapy for three months and will continue with weekly sessions. His consultant plans to commence nerve block treatments this week [November 4], involving injections into the nerves to prevent pain signals.
Charlie concluded: "I'm now in a position where I need to be getting back on track with my career. I've been able to pay for my nerve blocks with my GoFundMe - but I'm still raising money for some new camera equipment, and to be able to live independently. Our family has had to spend £10,000 of inheritance money to get me the treatment I needed."
Charlie's GoFundMe link is here.
If you've been affected by any of the issues in this story you can contact Samaritans in the UK and Ireland on freephone 116 123, or email jo@samaritans.org or jo@samaritans.ie
