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The humiliation of prolonged pain needs to be better understood

MORE than fifty percent of people living with chronic pain feel stigmatised because of their condition, according to new data released today by Chronic Pain Australia.

For Rachel O’Dowd, a slight twist of the ankle led to 18 months of chronic pain.

A persisting limp led the mother-of-three through doctors’ and specialists’ offices until she was finally diagnosed with Complex Regional Pain Syndrome (CRPS).

Rachel said at night, the foot would periodically go bright, bright red right up my leg like a sock.

“I tried a lot of medications none of them worked,” she said.

Senior Research Fellow at Curtin University Dr Darren Beales, a CRPS expert, said CRPS misunderstood because the condition’s cause is largely unknown.

“CRPS is characterised by heightened pain, sensitivity and swelling, and changes in the colour and texture of the affected limb,” Dr Beales said.

“It comes down to bad luck, but it’s kind of the worst pain disorder; you wouldn’t wish it on your worst enemy.”

Rachel spent her evenings on the couch, elevating her swollen foot, unable to sleep from the pain.

“In the end, I was on antidepressants to sleep. I would take it because I wasn’t sleeping from the pain much at all,” she said.

She said the mysterious cause of her pain began to affect her mental health.

After eight months of ineffective treatment, she began to feel like it was all in her head.

“You sort of think you’re going mad,” Rachel said.

Dr Beales said that “disbelief by healthcare practitioners, disbelief by employers, and disbelief by friends” was a common experience among people suffering from CRPS.

He said this often leads to relationship breakdowns in family units and undermines trust and engagement with the healthcare system.

CRPS is so poorly understood because it is diagnosed by excluding other possible conditions.

Dr Beales said this led many sufferers to become frustrated with the lack of clarity delivered by healthcare professionals.

Dr Beales’ research group are now developing an infographic to address “a real gap in not just information on CRPS in general but particularly on how that affects people’s lives and what strategies other people have found to be helpful.”

Eventually, Rachel saw a podiatrist who recognised the symptoms from a patient some 25 years prior and referred her to a pain specialist specialising in CRPS treatment.

“I had to do three spinal blocks over nine months,” she said.

A spinal block is the injection of strong anaesthetics into regions of the body to block pain.

For those suffering from CRPS, it can help manage symptoms and allow the condition to resolve.

But even with the pain gone, Rachel found her ordeal was not over.

“[At] a certain point, my brain had stopped recognising the left side of my foot in preference to the right side,” she said.

Dr Beales said this is not uncommon in people who have recovered from CRPS.

“There’s graded motor imagery, so people with CRPS lose or have an interrupted connection with that part of their body in their brain.”

Rachel’s foot no longer causes her pain.

Her advice for those dealing with chronic pain is to seek help when it begins.

“I just kept going; like they’d tell me six weeks, and after the six weeks, I’d go see someone else,” she said.

“A shred of wisdom that I should pass on is, when it hurts, get it seen.”

National Pain Week runs from the 26th July – 1st August

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Elliot Goodyer

Elliot is a freelance print and radio journalist with a passion for experimental radio fiction, podcasting and international affairs

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