Bella Macey suffers from the most painful condition known to man: every touch is agony

A little girl is suffering from a chronic pain disorder so cruel that even a hug from her doting parents means screaming in agony.

Melbourne’s Bella Macey, 10, fights complex regional pain syndrome (CRPS) every day, while her exhausted family raises funds for expensive treatment overseas.

CRPS is a rare neurological disorder that causes extreme discomfort and is one of the most painful incurable conditions that humans can experience. 

Bella rates the pain as a ’10’ out of 10.

Melbourne’s Bella Macey, 10, fights complex regional pain syndrome (CRPS) every day, while her exhausted family desperately explores overseas treatment options

The chronic disorder so cruel that even a hug from her doting parents means screaming in agony

The chronic disorder so cruel that even a hug from her doting parents means screaming in agony

‘It’s all sharp, it’s burning, it’s tingly, it’s all sore. It’s different pain [that] I never knew was possible,’ she told A Current Affair. 

In the month since Bella was diagnosed she has also lost movement in one leg and even simple tasks have become insufferable.

‘I can’t have a shower, I can’t have a bath,’ Bella said. 

‘I can’t put (on) any sheets or anything on … even with a tissue, you can’t touch it with anything, otherwise I will scream.’ 

The trouble began when a small infection appeared on her foot while she was at the beach with her family during a holiday in Fiji. 

But the blister soon became agonising and her entire leg starting to hurt.

Upon returning to their home in Melbourne, she was rushed to the emergency room at the Alfred for treatment.

Doctors conducted X-rays, ultrasounds and blood tests but were unable to identify what was wrong.

Bella received strong antibiotics in the meantime, which proved to have little-to-no effect on relieving her pain.

After her original infection dissipated and the pain lingered on, Bella was diagnosed with the disorder.

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

It’s unclear what exactly causes CRPS but it’s thought it could be due to the nerves in the affected area becoming more sensitive, which may change the pain pathways between the limb and the brain. 

Bella Macey, 10, has been fighting complex regional pain syndrome (CRPS) in hospital - as her family desperately seeks treatment overseas

Bella Macey, 10, has been fighting complex regional pain syndrome (CRPS) in hospital – as her family desperately seeks treatment overseas

The condition developed from a blister on holiday in Fiji, which morphed into an infection followed by excruciating pain in her leg

The condition developed from a blister on holiday in Fiji, which morphed into an infection followed by excruciating pain in her leg

CRPS is a rare neurological disorder causes extreme discomfort and is known as one of the most painful incurable conditions in the world. Pictured, Bella Macey

CRPS is a rare neurological disorder causes extreme discomfort and is known as one of the most painful incurable conditions in the world. Pictured, Bella Macey

Since her diagnosis, Bella is primarily bedridden and has lost movement in her leg. She sometimes requires a wheelchair to get around.

The pain in her leg is so severe that she has also developed hypersensitivity – meaning a simple touch can feel agonising.

It has also caused extreme stress and pressure on the family.  

Despite being on strong medication daily during her month-long stay in hospital, nothing has helped to alleviate the young girls’ pain.

With no effective treatment available in Australia, her parents, Chris and Emma, turned overseas for treatment options.

Through extensive research, they found the Spero Clinic in the US which specialises in CRPS. 

Emma has since set up a GoFundMe page to raise funds in order to send Bella to the clinic for treatment and for medical expenses.

‘Bella has been in hospital for 4 weeks now and unfortunately, there is no treatment available to her at the RCH or elsewhere in Australia that will treat the cause of the pain,’ she wrote.

‘She has been on intense medication, none of which have worked and we are desperate to send her to a clinic overseas that is specialized (sic) and has credentials in providing remission for their patients.

‘This is where your generosity becomes a lifeline for Bella.’  

With no effective treatment available in Australia, Bella's parents, Chris and Emma, turned overseas for treatment options

With no effective treatment available in Australia, Bella’s parents, Chris and Emma, turned overseas for treatment options

Young Bella Macey is pictured in happier times

Young Bella Macey is pictured in happier times

Emma stressed how invaluable every donation to help daughter would be, no matter how small. 

‘Every donation, no matter the size, will make a significant impact on Bella’s journey towards recovery,’ she wrote.

‘Your support will not only alleviate the financial burden on our family but will also restore hope and strength to Bella and remind her that she is not alone in this fight.’

‘Together, we can help Bella overcome CRPS and pave the way for a brighter future.’

‘From the bottom of our hearts, we express our deepest gratitude for considering Bella’s cause. Your support will bring us one step closer to seeing Bella smile, walk, play, attend school and thrive once again,’ she added.

The GoFundMe for Bella can be found here.  

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

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