Man living with condition so painful it's dubbed 'suicide disease' - and took years to diagnose

A man said he spent years "begging" doctors for a diagnosis after developing a condition so excruciatingly painful it's dubbed 'suicide disease'. Baffled medics struggled to work out what was wrong with Charlie Moore - while his life was left "in tatters".

The 21-year-old had to drop out of his "dream" apprenticeship with MTV when the right side of his upper body suddenly became swollen and inflamed. In the space of two years, he claimed he visited A&E around 10 times as he was desperate for treatment.

Charlie has finally been diagnosed with complex regional pain syndrome (CRPS) - a chronic condition that can cause severe pain in the arms, legs, hands or feet. Treatment includes injecting medicine into the nerves to block pain signals - but there is no known cure.

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The condition has been nicknamed the 'suicide disease' because of the prevalence of people taking their own life due to the pain, SomersetLive reports. Charlie, a freelance filmmaker, said: “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."

When Charlie was 18, he dropped out of college to begin a two-year video editing apprenticeship with MTV and moved from Frome to London. But in his second year, he started experiencing muscle spasms, which turned into right-sided headaches.

Charlie said: "The pain started off as muscle tension and spasms. I remember first going to the GP around this time." He was told to treat headaches with paracetamol and ibuprofen - and placed on a six-month waiting list to see a neurologist for an MRI.

But within six months, his symptoms intensified - and the headaches turned into "muscle-ripping" pain on the right side of his body. "I mainly get it in my right arm, right hand, it spreads all the way up into my shoulders, neck muscles and my head," he said.

"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."

Charlie dropped out of his apprenticeship in mid-2022. He tried to work as a freelance filmmaker but found his pain often prevented him from doing commissioned work.

A "disastrous" work trip to Spain saw things come to a head. "It was a nightmare," he said. "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."

Charlie moved back to Frome with his family upon his return, but struggled to receive a diagnosis. He said he wrote letters to his MP and spoke to the head of his GP surgery to be prescribed medication, like oral morphine. His debilitating pain saw him attempt to take his own life in late 2023 and he then went to seek answers at the London Pain Clinic on Harley Street.

He said: "I've been at the Pain Clinic for about three months. I went through a lot of blood tests to rule out lots of conditions - like carpal tunnel syndrome."

However since receiving his diagnosis, Charlie said he was "in a position where I need to be getting back on track with my career". He continued: "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."