Without an increase in awareness of CRPS, the cause of the “suicide syndrome” will remain unknown.
NSW-based Neuroscience Research Australia senior research scientist James McAuley said a lack of attention and funding stymied any breakthroughs being made.
“I would say that we’re not that close, and the reason for that is, it’s a very poorly understood condition,” he said.
“There’s not much money in research, so we’ve got a few years to go before we find out why it is some people don’t recover.”
Dr McAuley said for the 20,000 Australians who had CRPS, it was often triggered by some sort of trauma.
“People develop CRPS after they’ve had some kind of injury, and that doesn’t have to be a threatening injury, but something like a needle-stick or a cat bite.
“Three to five per cent of people don’t recover – they develop unusual symptoms like increased hair growth, their arms swell up, their nails grow longer very quickly, and they have this really, really intense pain.
“Often they’re hyper-sensitive to the cold or heat, so they might walk past a fridge in the supermarket and that might bring the symptoms on.
“The longer things go on, the less probability there is for them to have a spontaneous recovery.
“There’s some work done out of the UK that shows 50 per cent of people with CRPS have contemplated suicide, so clearly it’s one of the most distressing pain conditions you can have.”
The most common treatments are physiotherapy and medication.
Dr McAuley said he was not familiar with the calmare therapy treatment.
“The reasons I wouldn’t have heard about it, is because it hasn’t been tested in clinical trials, but that’s doesn’t mean it won’t work,” he said.
“We are going to be trialling some new treatments next year, we’re going to put two treatments together and hopefully we’ll reduce the pain in some cases.”
Dr McAuley said stigma was one of the most damaging aspects of the condition.
“When it’s not explainable by a cause, people think it must be all imagined, and that’s very destructive for people that have CRPS, and it’s also not true,” he said.
Chronic Pain Australia president Coralie Wales said there was still lots of work left to do to provide support to CPRS sufferers.
“Some health professionals still prescribe to the idea, that if “I’ve got a sore back, I’ve got to work, why cant you?” she said.
“We’re working with the federal government to provide some online support, so you can search for someone online who might have a similar experience.
“If you feel alone, the pain will be worse, so we’re trying to provide that support.”