Health SOS
The best health advice for you and your family
When my daughter Millie began screaming in agony, I couldn’t believe the doctor’s diagnosis
My phone rang and I answered to hear my mum on the other end.
‘Come and fetch Millie,’ she said. ‘It’s an emergency.’ My 17-year-old daughter often visited her nan after school. When I arrived, I found her in pain.
‘My big toes are burning,’ Millie said.
‘It’s probably just your new school shoes rubbing,’ I replied.
But she was in agony all evening, so I got an emergency GP appointment.
‘I think it’s an infection in both toes,’ the doctor said.
Over the next few days, Millie’s pain spread through her body.
‘Please don’t touch me, it hurts so much,’ she said, as I tried to hug her.
I took her to A&E, but doctors weren’t sure what was wrong.
Millie kept passing out from the pain, and repeatedly stopped breathing. Her body started to shut down, and her skin was raw and swollen in patches.
For the next five weeks, she slipped in and out of consciousness, before she was transferred to the Evelina Children’s Hospital in London.
There, we got a diagnosis.
‘She’s got complex regional pain syndrome,’ the doctor explained. ‘It’s an issue with the sympathetic nervous system.’
Millie’s nerves were misfiring and sending constant pain signals to her brain.
She told me how it felt.
‘Light is like fireworks going off in my head,’ she cried. ‘Clothes feel like I’m being covered with wasp stings.’
Millie spent two years in hospital before she was able to come home.
The burning pain meant she was still wheelchair-bound and suffered constantly, and I became her carer.
One morning, she told me: ‘I feel like I don’t want to wake up any more.’
It was heartbreaking.
I discovered Millie’s condition, CRPS, was often called ‘the suicide disease’. Because it was so painful, sufferers often didn’t want
