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.
While CRPS can affect people in many different ways, for Pauline it's daily pain, like acid in her veins or an ice burn; touch makes it worse, even clothing is too much sometimes. From her right knee, the pain spread to foot, hip and eventually her right arm. It's so debilitating, so life-affecting that it's sometimes referred to as 'suicide disease'.
The twisting, contortion of her limbs is a secondary condition called dystonia - that diagnosis came in 2015.
It's a relentless, unpredictable package that's cost Pauline her "dream job" as a childcare worker, the possibility of earning an income (she's not eligible for disability support payments), and even friends.
"They'd call up and ask me out, and one minute I'd say 'yes' then the next I'd have to call up and say 'I can't go'," she said. "Then when you are out and about people look at you and think, 'There's nothing wrong with you. You look normal, you're up, you're walking.' But they don't see what happens when I go home... It can be isolating."
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Pauline has experienced this disbelief and misunderstanding from health professionals, too. Especially early on.
"You get told with chronic pain conditions that it's all in you head," she said. "They'd say, 'You're not doing enough with the physio, that you don't want to get better.' Meanwhile I'm looking at my leg changing colours."
Physios plunged her into water therapy that felt like it scalded her skin, pushed her on exercise machines, and tried to straighten her twisting limbs. Mackay doctors, meanwhile, just saw a cabinet full of pills as the solution.
At the time, it was maddening for Pauline and her partner, Richard.
"Nobody was listening. That's why he ended up recording the videos, because it's not all the time that I'm going to flare in front of doctors. Then we could show them, this is what we're dealing with," she said. "At my darkest time suicidal thoughts were coming through, because nobody was giving us answers or telling us what was going on. But I'm too stubborn, I didn't want to take the easy way out because what happens if tomorrow they find a cure?"
Research by Chronic Pain Australia shows that Pauline's experience is typical.
"GPs are the primary port of call for many pain sufferers," said Dr Coralie Wales, President of Chronic Pain Australia, "but unfortunately, most don’t have adequate training in pain management, or the time and resources to effectively manage pain patients who have complex needs. Affordability and access of treatment plays a huge role, and prescribing pain medication is often the cheapest, quickest and easiest treatment option available.”
The organisation found that the average medication spend in 2017 was $152 per month, while the average monthly spend on pain treatments was $473, more than double what it was in 2009.
“We are calling on the government to strengthen primary care and address the systemic barriers that are preventing people living with chronic pain from accessing the treatment they so desperately need," Dr Wales said.
A specialist in Sydney proved life-changing for Pauline. On reduced medication and with proper care and advice, Pauline was able to conceive and carry a child - oddly, for those nine months she was pain-free for the first time in years.
But it returned again two weeks after her cesarean birth when she busted an internal stitch, resulting in a flare up so severe that for the first time she let Richard call an ambulance - "they said they'd never seen anything like it."
Pauline's son, Max, is now one. He'll be walking soon, which worries Pauline. Not only will she struggle to keep up with him, but because "they mimic everything," she says. "I'm hoping that he's not going to end up with a limp like me."
Her CRPS means that sometimes she also has to be a spectator in parts of her son's life. She can't go swimming with him or put him in the sandpit because both hurt her skin. Bath time, too, is up to Richard.
"He has to check the temperature, because my body doesn't understand temperature - I can't tell if it's too hot or too cold. I don't want to burn him, or put him in cold water," she said. "I'm just there."
Her condition is as under control now as it has ever been, and doctors are hopeful that they'll be able to achieve relief within the next two years, with likely surgeries on her ankle and knee to follow. Pauline is realistic though; she's not clinging to any time frame and knows there's a chance that it could recur later on.
Her doctor and her psychologist have proven invaluable in helping her through it, but it's Richard that's her "rock". The responsibility of supporting them financially, of maintaining the household, of checking she's still breathing during a flare up, all falls on him.
"It's one of the hardest things you can go through, watching your partner struggle," she said. "When it first started he'd be on the phone six or seven times a day just to make sure I was OK. And of course they'd be days where I'd tell a little white lie and say everything was good when really my leg was going off. I'd say, 'Yeah everything's good,' just to help him get through his day.
"He's been through the runner just as much as I have. In a way it's like he's got the condition as well. His life has changed as much as mine."
Max, though, is what motivates her.
"I still can't go swimming with him, I can't do certain things with him that I really want to do," she said. "But I just say to myself, 'OK, maybe I can't do that today, but maybe tomorrow. There's always tomorrow.' Even if that tomorrow is another two or three years down the track, I'm determined to get there."
For more information, visit the Chronic Pain Australia website.