21 Jan 2014

‘You need to be a fighter’: living with CRPS

The response to the story of one girl’s battle with complex regional pain syndrome has been huge. Here, sufferers tell Channel 4 News how Paige helped shine a light on a much misunderstood condition.

Eleven-year-old Paige Rodbard-Brown has a condition so painful it is rated above having an amputation without an anaesthetic.

She has lost the use of one arm and it is only in the swimming pool that she can at least move her legs freely. It is too painful for her to stand, and her knees are rubbed red because she uses them to get around.

When Channel 4 News brought Paige’s story to the airwaves on Saturday, there was a huge response from sufferers who shared her frustration about the lack of awareness about the condition. It took doctors months to correctly diagnose her with complex regional pain syndrome – an agonising condition with dramatic symptoms, but that is triggered by a very small injury.

In Paige’s case, the condition was triggered by a minor injury she had while playing football. Many did not believe she could be in such pain – another common complaint from sufferers, who make up one in 4,000 people.

Experts agree that there is a lack of understanding about the symptoms and treatment. One said in December that diagnosis was far too slow, which was resulting in a delay to treatment. Gill Thurlow, consultant nurse at the Royal National Orthopaedic hospital (RNOH), which offers a specialist CRPS programme, said:

“They’ve often been through a journey by the time they get to us. It can be a difficult journey. Some of the symptoms are very particular. I would imagine most GPs don’t see one [case] in their career, let alone often. It is unusual. It’s fair to say it’s poorly recognised.”

There is treatment available. After a two-week therapy course, Paige went from having no independent movement to being able to run on a treadmill. But the pain remains, and the after effect of the activity is often more pain.

Read more: For Paige - her website and journal

‘It’s all in your head’

Paige’s mother Nicola Rodbard-Brown, who described the condition as “heart-breaking”, told Channel 4 News that there has been an overwhelming response from viewers wanting to donate money to the charity, For Paige. It is raising money for a wheelchair for Paige, and equipment, such as crutches, for other sufferers.

“Within two minutes of the news finishing, we had a donation of £500,” Ms Rodbard-Brown told Channel 4 News. “We’ve had another single donation of £100. People don’t realise just what this means – that’s a good six or seven pairs of crutches.”

And aside from the money, the family has been contacted by fellow sufferers who said that Paige telling her story, helped them to articulate the severity of the condition.

Chelsea, 20, a CRPS sufferer in Liverpool who stays in a residential hospice, showed the report to her nurses and carers. Previously they had told her the pain was “in her head”, and the report was like a lightbulb moment – they finally understood what she was going through.

“She wants to meet Paige, and thank her in person, as she’s shone a light on to CRPS,” said Ms Rodbard-Brown. “There’s a lack of understanding – a constant thing of ‘it’s all in your head’,” she added. “Everyone has good days and bad days. For Paige, a bad day is a wheelchair, day, and that’s even if she can get out of bed.”

“We want to bring more awareness of the situation that Paige is in, and the many people out there having to live with this condition.”

Here are some of the responses Channel 4 News has received:

Lindsay Langdon: “I have CRPS. I am an adult and it is incredibly tough to live with. I am just so thankful that more people are getting to hear about it. Pain is invisible. And that makes living with it even harder. You need to be a fighter.”

Elisa Bayliss “My daughter is 13, and has CRPS in her leg. We went through hell, but she has come out the other end – not better, but coping with good and bad days. But much better than she was.”

Rebecca Grant: “Thank you for raising awareness of this condition, and of other invisible, chronic pain conditions as a result. Paige’s story is very sad, but also inspirational, as she seems like such a wee fighter.”

Natasha Knight: “My 10-year old-son suffers from CRPS in both feet and ankles and uses a wheelchair full time. He has been suffering for the last year, he was admitted to Great Ormand Street Hospital for a two week rehab program last February and went into remission for four months but unfortunately relapsed in June and has been back in his chair ever since.”

Louise Hilborne: “
My sister is in constant agony and she shouldn’t be. She went into hospital for what should have been a simple operation to remove a small growth under her toe. A neuroma. Her life has now changed beyond comprehension. She can’t work, can’t walk far, can’t do much at all… Who would have thought that such a minor procedure would or could trigger this debilitating condition?”

Complex regional pain syndrome - the NHS definition
Complex regional pain syndrome (CRPS) is a poorly understood condition in which a person develops a persistent (chronic) burning pain in one of their limbs. The pain usually develops after an injury – which in most cases is minor – but the pain experienced is out of all proportion to what you would normally expect. For example, a person with CRPS may only strain their ankle but it can feel like a serious burn. The skin of the affected body part can become very sensitive, and even the slightest touch, bump, or change in temperature can provoke a feeling of intense pain. If left untreated the pain can spread to other parts of the body too. [Source: NHS]