Man’s condition so painful it’s dubbed ‘suicide disease’ 

By Hannah Van De Peer

A man suffering a condition so excruciatingly painful it's dubbed "suicide disease" left doctors baffled for four years - because they couldn't work out the cause.

Charlie Moore, 21, had to drop out of an apprenticeship at his dream workplace, after the right side of his upper body suddenly became inflamed and swollen.

He visited A&E around 10 times in two years, "begging" doctors for a diagnosis and treatment.

But clinicians struggled to work out what was wrong with him - while his life was left "in tatters".

Charlie has just been diagnosed with complex regional pain syndrome (CRPS) - a chronic pain condition that can cause severe pain in the arms, legs, hands or feet - in the last two weeks.

His consultant will be starting him on nerve blocks - which involves injecting medicine into the nerves to block pain signals - but there is no known cure.

CRPS is nicknamed the 'suicide disease' because of the prevalence of people taking their own life due to the pain.

Now, living on just $115-a-month Universal Credit, Charlie is raising money to afford to live with his health condition, as well as funding treatment.

Charlie, a freelance filmmaker who is out of work, from Frome, Somerset, 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."

At 18, Charlie dropped out of college to begin an apprenticeship with MTV.

The video editing apprenticeship, starting in 2020, was due to last two years, and saw Charlie moving to London from Frome.

But in his second year, he started having muscle spasms, which turned into right-sided headaches.

"The pain started off as muscle tension and spasms," Charlie said.

"I remember first going to the GP around this time."

Charlie's doctor told him to treat the headaches with paracetamol and ibuprofen - and placed him on a six-month waiting list to see a neurologist for an MRI.

Within six months, Charlie's symptoms intensified - and his headaches turned into "muscle-ripping" pain on the right side of his body.

He said: "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 discoloration - my right hand was once so swollen, it was almost purple."

Charlie dropped out of his apprenticeship in mid-2022 - and tried to work as a freelance filmmaker.

But he found his pain often prevented him from doing commissioned work.

He says his illness came to a head after a "disastrous" work trip to Spain.

"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."

When Charlie came back from his trip, plans were put in place to move him back to Frome with his family.

He struggled to receive a diagnosis - and says he wrote letters to his MP and spoke to the head of his GP surgery to be prescribed medication, like oral morphine.

In late 2023, Charlie even attempted to take his own life due to his debilitating pain - prompting him to seek answers at the London Pain Clinic on Harley Street.

"I've been at the Pain Clinic for about three months," Charlie said.

"I went through a lot of blood tests to rule out lots of conditions - like carpal tunnel syndrome."

Charlie received a diagnosis for complex regional pain syndrome (CRPS) - a chronic pain condition that can cause severe pain in the arms, legs, hands or feet - two weeks ago [October 21].

He's been receiving physiotherapy for three months, and will continue to do so on a weekly basis.

His consultant will be starting him on nerve blocks from this week [November 4] - which involves injecting medicine into the nerves to block pain signals.

Charlie added: "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."