Inside the agonising world of little girl, 10, diagnosed with world’s ‘most painful condition’
A GIRL has revealed how agonising it is to live with the world’s “most painful condition”.
Bella Macey, 10, from Australia, was diagnosed with complex regional pain syndrome (CRPS) after suffering debilitating symptoms while on holiday with her family in Fiji.
Her condition was triggered by an infection in her right foot and now she endures searing pain in her leg whenever she tries to move it or someone touches it.
She has been left bedridden or needing to use a wheelchair and rates her pain as 10 out of 10.
Bella told A Current Affair: “It’s all sharp, it’s burning, it’s tingly, it’s all sore. It’s a different pain I never knew was possible.
“I can’t have a shower, I can’t have a bath, even with a tissue, you can’t touch it with anything, otherwise I will scream.”
CRPS is poorly understood and causes patients to suffer “persistent severe and debilitating pain”, according to the NHS.
Around 16,000 Brits are thought to have the condition, which is usually triggered by an injury — but the resulting pain is much more intense and long-lasting than normal.
It has been dubbed the “suicide disease” because it can leave patients in so much distress they say they would rather die than continue living with the pain.
Usually, it only affects one limb and the skin of the affected body part can become so sensitive that a slight touch, bump or change in temperature causes agony.
Bella spent weeks at the Royal Children’s Hospital in Melbourne but medics were unable to give her any helpful treatment, her mum Emma said.
She said: “She has been on intense medication, none of which have worked.
“We are desperate to send her to a clinic overseas that is specialised and has credentials in providing remission for their patients.”
She and her husband Chris have spent weeks taking turns to sleep with her on the couch downstairs because she is unable to get upstairs to her bedroom.
Bella has gone from being a happy, active child to being nearly unable to move, Emma said.
They can’t even give her a hug because “if I cuddle her, then it moves her and that hurts her”, she added.
The family has set up a GoFundMe fundraiser to pay for Bella’s treatment at the Spero Clinic in Fayetteville, Arkansas.
What are the symptoms of Complex Regional Pain Syndrome (CRPS)?
The pain of CRPS is usually triggered by an injury.
But the pain is a lot more severe and long-lasting than would normally be expected.
The pain may feel like a mix of burning, stabbing or stinging. There may also be tingling and numbness.
In addition to chronic pain, CRPS can also cause a range of other symptoms.
These can include:
- strange sensations in the affected limb – it may feel as if it does not belong to the rest of your body, or it may feel bigger or smaller than the opposite unaffected limb
- alternating changes to your skin – sometimes your skin in the affected limb may be hot, red and dry, whereas other times it may be cold, blue and sweaty – changes to skin colour may be harder to see on brown and black skin
- hair and nail changes – your hair and nails in the affected limb may grow unusually slowly or quickly and your nails may become brittle or grooved
- joint stiffness and swelling in the affected limb (oedema)
- tremors and muscle spasms (dystonia)
- difficulty moving the affected body part
- difficulty sleeping (insomnia)
- small patches of fragile bones (osteoporosis) in the affected limb – although there’s no evidence this could lead to fractures
Source: The NHS