Complex Regional Pain Syndrome: many have never heard of it, but its effects are agonising and it can be triggered by a seemingly small incident. We’ve asked one young child to tell us her story.
Paige is about to run Race for Life on her crutches, in tribute to her grandmother. She says she is determined to get through whatever it takes. Her JustGiving page is here.
In the pool, 11-year-old Paige Rodbard-Brown almost returns to her old self, the active child her mother knew before a small knock changed her life.
Paige now has a condition so painful it’s rated above having an amputation without an anaesthetic.
She’s lost the use of one arm – in the pool she can at least move her legs freely. But her knees are rubbed red because she uses them to get around.
It’s just too painful to stand – Paige has chronic regional pain syndrome, which was triggered in this previously healthy girl when another child mistakenly stood on her hand in a game of football just a year ago. The pain she now feels is entirely out of proportion to what happened.
Paige – who wants to be a singer songwriter – tries to keep her pain hidden, which can make it hard to believe she really is in the agony she describes.
Her family agreed to share a home video with us. It shows what they call a pain spike, suffered by Paige the day after she went swimming. It’s upsetting.
“It is extremely heart-breaking because as a mother you constantly see your child in pain,” said Paige’s mother Nicola. “But you can’t kiss it away – you want to be able to hold them or comfort them and I can’t do that with Paige… I can’t touch her – put a plaster on her – the pain killers the hospital gave her didn’t work.”
You can’t kiss it away. Paige’s mother
Paige’s condition can improve with intensive therapy. Here, over two weeks, she progresses from having no independent movement to being able to run. But the pain never goes away and the after effect of this much activity is… more pain.
Paige had led a normal active life. But after getting the condition it took doctors months to correctly diagnose it. Even though it’s thought 1 in around 4,000 people have Complex Regional Pain Syndrome. many didn’t believe Paige could be in such pain. Those that do recognise the syndrome say it’s vital there is greater awareness.
It is certainly taken seriously by all those who are familiar with it but sometimes it meets a person who isn’t familiar with it in a healthcare environment and that is when misunderstanding can happen and maybe it won’t be appreciated because as I say the history of how it happens is unusual – a very small injury and suddenly very dramatic symptoms so it can become confusing to the doctor or nurse who fist encounters it.
Read more: For Paige - her website and journal
Her parents have set up a website telling her story – For Paige – it details the severe pain that people with CRPS suffer, gives a journal of her day to day life and shows how people can help her and others like her.
Paige wants to raise awareness of the condition, despite her own suffering. As well as the pain, she says the impact on her family is hard to bear.
“We want to go to the park or into town. We can’t because it is too busy. It’s just affcted them with the silly little things that normal people would do and think ‘yeah let’s do that’. Or spend time with people you know but i can’t do that and nor can my family because of me… I dont want them to miss out on stuff because of me.”
Her pets, her schoolfriends, her family keep Paige going, but this is a little girl who undergoes daily pain the rest of us might never experience in a lifetime.
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 a minor injury – 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]