A teenager from Llanidloes says he feels trapped by an excruciating pain condition that very few doctors have heard about.

Huw has been mainly wheelchair bound for at least four months because of Complex Regional Pain Syndrome, or CRPS, a poorly understood condition of persistent pain commonly triggered by an injury that sometimes spreads to other parts of the body.

The 15-year-old loved playing sports, especially rugby, but ever since an accident with the Army Cadets in 2017, Huw has been left unable to walk without suffering debilitating pain.

“I fell over while walking on those off-road tracks and then my foot slipped on the side of one of them and it buckled underneath me. I just sprained my ACL [anterior cruciate ligament], something simple like that.”

The poorly understood condition can often lead to suffers waiting a long time before being diagnosed with Complex Regional Pain Syndrome. Huw and his mum Rachel say they were ‘very lucky’ to get a quick diagnosis at Bronglais Hospital in Aberystwyth.

Rachel said: “It was quite obvious that there was something very wrong. But luckily, Bronglais spotted it immediately. One of the problems of the condition is that doctors don’t know about it and it doesn’t get spotted.”

The condition leaves sufferers like Huw with constant agonising pain where any slight touch, bump or change in temperature can hurt.

“It’s like a stabbing pain; it’s sharp, throbbing and itchy. It’s every pain you can think of in one. The skin peels off when you itch as well, and my leg swells a lot. My legs and my hands are the only places where it mottles, it can be purple, it can be red, and it’s been blue and white.

“I struggle with heat as well, that makes my condition worse and then I get in more pain.”

The strain of living with chronic pain can sometimes lead to psychological problems, such as depression and anxiety. 

It is seen as a chronic neuropathic pain condition which up to 1 in 3,800 people in the UK develop every year, according to the NHS.

Rachel said: "Doctors say it's probably a neurological thing and the pain sends out these massive pain signals to wrong places and you’ve got to re-wire it.

"The biggest thing this condition needs is not just the physiotherapists but the psychologists because it’s a neurological thing. They’ve got to come at it at both ways."

Sufferers are in so much agony that they consider amputation to try and get rid of the pain. Huw says he has considered amputation to deal with the crushing pain which he says is similar to a 'lorry driving up and down it all day, non-stop'.

"I could get on with my life and I would be able to do sports and run again. Because at the moment all I’m doing is sitting in a wheelchair. My knee down its absolutely unbearable. I couldn’t deal with that forever."

This month Burning Nights CRPS Support, a UK-wide charity dedicated to supporting those affected by Complex Regional Pain Syndrome, is raising awareness of the condition.