Oldham teen shares struggle living with complex regional pain syndrome

Maddison "Maddy" Haining woke up one morning in March 2021 with pain in her right leg that rapidly progressed.

After spending the week in hospital, she was transferred to Royal Manchester’s Children’s Hospital where she remained until two months later when doctors diagnosed her with complex regional pain syndrome (CRPS), a rare and often misunderstood disease.

CRPS is a chronic nerve disease where even the slightest touch can trigger intense pain.

It has been dubbed the "suicide disease" due to the high prevalence of sufferers who tragically take their lives to escape dealing with the pain.

Michelle Haining, Maddy’s mother, said she was “terrified” when she first heard the diagnosis and learned of its nickname.

Ms Haining said: “I didn’t understand how even a tiny blanket on her leg would cause her the most awful pain.

“The first few months were awful – she was in so much pain, screaming in the night and not sleeping, begging us for help.

“It was a constant battle to try to keep her comfortable, but nights were always the worst.”

Unfortunately, the pain spread throughout Maddy’s body and her entire right leg went numb on the morning of New Year’s Day.

Maddy with mum, Michelle, sister Harper, brother Owen and dad William (from left to right)

Then in January this year, she was diagnosed with functional neurological disorder (FND), another nasty disease which paralysed her leg though Maddy says symptoms of the disorder, which include tics, stutters and brain fog, were showing in mid-2020.

However, Ms Haining claims FND has provided the teenager with a "break" from the constant pain.

“The leg that went paralysed was the one that kept her in the most pain.

“Yes, it was scary – but the pain has also gone”, Ms Haining added.

The teenager said she was also happy to finally have answers to the chronic pain she'd been enduring, particularly as she struggled to get doctors to understand.

Maddy said: “FNDS and CRPS are hugely unknown and misinterpreted conditions that even a lot of medical professionals don’t know much about.

“(It’s) more than a child should ever go through but this is unfortunately mine and a lot of other children’s reality – it might sound harsh but it’s the raw truth.”

The conditions affect every single aspect of Maddy’s daily life from holding things in her hands to going to school – not least of all because she attends the children’s hospital almost every week for occupational therapy, physio, rheumatology, orthotics or hydrotherapy.

Ms Haining said: “It’s full-on.

“It’s changed our lives but we get on with it and we fight to get her to walk again.”

Maddy is constantly visiting the hospital for treatment

But the sudden need for a wheelchair has also meant the family home remains unfit to cater to Maddy's needs.

She can no longer access her bunk bed and has to crawl when accessing rooms upstairs.

Still, the North Chadderton School pupil remains positive and can be found dancing in her wheelchair or listening to her idol, Billie Eilish.

She said: “I know that my FND won’t go away – it’s a life-long condition.

“The paralysis might go away one day, but the condition itself won’t so what’s the point in feeling sorry for myself when I can be raising awareness?”

Ms Haining said her daughter’s positive attitude is inspirational for the whole family, including dad William Haining and Maddy's two siblings, Owen, 11, and Harper, six.

Ms Haining said: “Maddy blows us away.

“Her positive attitude is amazing, the way she gets on tries her hardest and doesn’t give up”.

Maddy continues to remain positive and raise awareness to her conditions

The youngster is now preparing for her fundraising event on Saturday. July 9 at Royton Cricket Club.

Maddy said: “I hope my fundraiser will help other children, teens and adults going through what I am and that they know they are not alone in this world and to keep fighting”.

The teenager also has some inspirational words for fellow FND and CRPS sufferers.

“Stay strong – it’s hard and there’s lots of judgement in the world, especially when you’re young and sick as it feels like people don’t believe you and that you’re alone.

“But I promise you’re not – we’re in this together.”