July 24-30 2017 is National Pain Week, an awareness campaign aimed at improving understanding of the needs of the one in five Australians living with chronic pain.
Queensland mother of one, Pauline Barker, is among them. This is her story.
The video is dark, a little grainy, but the agony is clear. Lying in bed, Pauline’s kneecap twists outward, her lower leg contorts, fighting, pulling against itself. Her toes writhe, her foot flexes like a ballerina en pointe, only there’s no grace here.
She moans gently as her partner tries to soothe her. “Breathe through it,” he says from behind the camera.
Then she passes out.
For Pauline, events like these – flare ups, they’re called – can last up to half an hour at their most severe. Though the “big, bad” ones are only twice monthly now, when they first began two years ago, they were happening nightly.
“[My partner and I] didn’t know what was going on,” the 36-year-old told Mamamia. “It got to the point where all he could do was to make sure there was nothing touching my body, and to sit next to me and tell me to breathe.”
For months, nearly 12 in fact, doctors in her hometown of Mackay didn’t either. It took a year for the diagnosis, which ultimately came via a doctor in Townsville.
“He said, ‘Unfortunately you’ve found the needle in the haystack, and we can’t put that needle back.’ And that’s when he diagnosed me with CRPS,” she said.
Complex Regional Pain Syndrome is a chronic pain condition believed to be caused by damage to, or malfunction of, the peripheral and central nervous systems. It's usually brought on by an injury - in Pauline's case a twisted knee she experienced at work in 2010.