Complex Regional Pain Syndrome: Little boy Ben Johnson struggling with condition ‘suicide disease’


A nine-year-old boy who rolled his ankle after roller blading has been struck down with a rare condition that is often called ‘suicide disease’ because the pain is so horrific it makes sufferers wish they were dead.

Ben Johnson, 9, from Melbourne, developed Complex Regional Pain Syndrome (CRPS) after he suffered the injury and the pain continued to get worse.

It got to such a point that Ben was unable to let his foot touch the ground, he couldn’t tolerate water touching it and a windy day felt like ‘daggers going into his lower leg’.

Ben has begged both his parents and doctors to amputate his limb to ease his 

suffering and told his mum and dad he ‘wants to die’ because the pain is so extreme.

 Ben Johnson, 9, has an extremely rare condition after rolling his ankle that is often called ‘suicide disease’ because the pain is so horrific it makes sufferers wish they were dead

Ben from Melbourne, developed Complex Regional Pain Syndrome (CRPS) after he suffered the injury and the pain continued to get worse (Ben pictured now)

Ben from Melbourne, developed Complex Regional Pain Syndrome (CRPS) after he suffered the injury and the pain continued to get worse (Ben pictured now)

Ben’s father, Peter Johnson, described his son as a ‘confident, healthy energetic boy with a passion for sports, especially basketball’ before he rolled his ankle and was sent for multiple tests and MRI scans 18 months ago.

‘Doctors originally thought it was a break, and then ligament damage, but when it didn’t get better after 10 weeks, we did some more digging and he was eventually diagnosed with complex regional pain syndrome,’ Peter told FEMAIL. 

CRPS is a form of chronic pain that usually affects an arm or a leg. It typically develops after an injury, a surgery, a stroke or a heart attack, and the pain is out of proportion to the severity of the initial injury.

According to the McGill Pain Scale, it is the most painful condition ever recorded, making it worse than childbirth – and it never stops.

Peter said it only affects a ‘few hundred Aussies every year’ and most are adults or teenagers.

‘Even the slightest touch from something as light as hair or a rain drop causes severe pain,’ Ben’s dad Peter wrote on Ben’s GoFundMe page.

‘Our boy has become a shadow of his former self. 

‘This has already destroyed 15 per cent of his life.’

'Our boy has become a shadow of his former self. This has already destroyed 15 per cent of his life,' his dad Peter (pictured with Ben) said

‘Our boy has become a shadow of his former self. This has already destroyed 15 per cent of his life,’ his dad Peter (pictured with Ben) said

'At night he tries to sleep with his leg hanging off the side of the bed, if he relaxes too much it touches something and he wakes up in agony,' Peter said (Ben pictured in hospital)

‘At night he tries to sleep with his leg hanging off the side of the bed, if he relaxes too much it touches something and he wakes up in agony,’ Peter said (Ben pictured in hospital)

Peter said his son’s life has been devastatingly impacted by CRPS.

‘At night he tries to sleep with his leg hanging off the side of the bed, if he relaxes too much it touches something and he wakes up in agony,’ he said, adding that Ben only gets around half an hour of sleep each night. 

‘His activities are extremely limited as any touch, water or wind is unbearable, his foot has not had a shoe or sock on for over a year, and other than when he has been given a general anaesthetic he hasn’t been able to wash it.’

Peter said Ben's right leg has 'wasted away' and 'changes colour throughout the day'. 'We can see his pain grow to a burning level as his leg becomes a darker colour and swells,' he said (Ben's legs pictured)

Peter said Ben's right leg has 'wasted away' and 'changes colour throughout the day'. 'We can see his pain grow to a burning level as his leg becomes a darker colour and swells,' he said (Ben's legs pictured)

Peter said Ben’s right leg has ‘wasted away’ and ‘changes colour throughout the day’. ‘We can see his pain grow to a burning level as his leg becomes a darker colour and swells,’ he said (Ben’s legs pictured)

Peter said Ben’s right leg has ‘wasted away’ and ‘changes colour throughout the day’.

‘We can see his pain grow to a burning level as his leg becomes a darker colour and swells,’ he said.

Within the house, Ben hops around on his one other leg, but outside, he ‘lives in a wheelchair and regularly closes his eyes and shuts himself away from the world because he is terrified of anything getting close or touching his leg’.

‘At first he used to use the crutches and one leg instead of the wheelchair, but now because he is so scared of escalating the agonising ache into a burning pain he finds it easier to be in the wheelchair,’ he said.

He is also developing osteopenia in both his limbs and spine. 

'At first he used to use the crutches and one leg instead of the wheelchair, but now because he is so scared of escalating the agonising ache into a burning pain he finds it easier to be in the wheelchair,' he said (Ben pictured in his wheelchair with his sister Esme)

‘At first he used to use the crutches and one leg instead of the wheelchair, but now because he is so scared of escalating the agonising ache into a burning pain he finds it easier to be in the wheelchair,’ he said (Ben pictured in his wheelchair with his sister Esme)

The McGill Pain Scale measures the pain of CRPS sufferers as being even worse than childbirth

The McGill Pain Scale measures the pain of CRPS sufferers as being even worse than childbirth

WHAT IS COMPLEX REGIONAL PAIN SYNDROME?

Complex regional pain syndrome (CRPS) is a condition that causes extreme discomfort that does not ease.

It usually affects just one arm or leg following an earlier injury, such as a fracture or sprain with no nerve damage, or nerve damage to a limb.

The body’s reaction is much stronger than usual and often causes pain worse than the original injury.

CRPS’ exact prevalence is unclear, however, a study claimed up to one in 3,800 people in the UK develop the condition each year.

And in the US, between 5.5 and 26.2 people suffer from CRPS per 100,000 every year. 

What are the symptoms?  

Pain is the main symptom, which may be burning, stabbing, stinging or throbbing.

The affected limb is usually sensitive to touch, with even clothing causing agony.

CRPS also causes swelling that can lead to stiffness, limb weakness and jerky movements. Joints may also appear redder or warmer than usual.

Many CRPS patients become anxious or depressed. 

What causes CRPS? 

CRPS’ cause is unclear but is thought to be due to the nerves in the affected area becoming more sensitive, which may change the pain pathways between the limb and the brain.

Rarely, stroke or multiple operations to the limb can be to blame.  

In one out of 10 cases there is no obvious cause. 

What are patients’ treatment options? 

There is no one treatment. Therapies aim to maintain movement through rehabilitation and pain relief.

This may include physio and occupational therapies, coping strategies and medications. 

Source: Versus Arthritis 

A nine-year-old boy who rolled his ankle after roller blading has ended up with an extremely rare condition that is often called 'suicide disease' because it makes patients wish they were dead (Ben Johnson pictured with his sister Esme)

Ben's parents are now trying to raise funds to send him to a rehabilitation centre attached to Boston Children's hospital  (Ben pictured with his sister)

Ben’s parents are now trying to raise funds to send him to a rehabilitation centre attached to Boston Children’s hospital  (Ben pictured with his sister)

Ben’s parents are now trying to raise funds to send him to a rehabilitation centre attached to Boston Children’s hospital.

Described as ‘the best place that can now help him’, this will involve an eight-week stay in the US and incur significant medical expense for the Johnson family.

Treatment at the centre aims to provide psychological, physical and emotional support via full days of care.

Peter has created a GoFundMe for Ben with a $175,000 target goal, and they have already raised $61,000.

‘Ben is a hilarious, caring, sporty little boy that’s desperate to be in his words “normal” again,’ Peter said. 

‘As a family, we are longing to see his cheeky smile and be nagged to go and shoot just a few more hoops or to have him play with his friends.’

He added: ‘Our entire family is desperate to allow our adorable son to regain hope, health and live a pain free life’.

For more information or to donate to Ben and his family, please click here

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