One Patient Explains What Complex Regional Pain Syndrome Felt Like For Her

April 21, 2017

From The Age by Melissa Cunningham

Chantelle Baxter was in so much pain it felt like her entire body had been dipped in acid.

In her most excruciating moments, she describes it as like being “burnt alive”.

“I thought I was dying,” she posted on her online blog.

“Someone was melting the bones inside my legs. Like I’m being burnt alive from head to toe. I was barely sleeping, spending most of my days inside on a couch or bed.

“The pain was constantly popping up in random places all across my body. I was in constant pain, completely terrified, exhausted and suicidal.”

Ms Baxter, 32, said she suffers a rare neurological condition called Complex Regional Pain Syndrome.

The cause of the rare condition is unclear, with theories ranging from auto-immune to nervous system dysfunction to issues with glial cells.

It most often affects hands, arms, feet or leg after an injury.

While most people recover, the condition can recur.

Research on the condition is relatively limited. 

Ms Baxter said she cannot walk, sit or lie down without pain.

The pain, she said, has spread throughout her body, most recently into her wrists and elbows.

The Melbourne entrepreneur’s “living hell” began after she twisted her ankle while hiking last year.

She was left in severe pain every hour of the day and suffered multiple convulsions.

Ms Baxter has dedicated her life to empowering the world’s most vulnerable people. She is co-founder of one of Australia’s fastest-growing non-profit organisations, One Girl, which pledges to educate a million girls across Africa by 2020. It has already helped thousands of girls and women in Sierra Leone in West Africa.

She also runs another new enterprise called Be Bangles, which sells bangles for the same cause.

She has been recognised as one of 30 Influential Aussie Women Under 30 and Melbourne’s Top 100 Most Influential People by The Age

But now, she is now fighting for her life and is hoping treatment at specialist facility in Arkansas will hold the key to her recovery.

Ms Baxter said she originally planned to go to Italy to try a drug called Neridronate Acid, which has been used to treat patients with an 80 per cent success rate.

However, she said she began responding well to Accelerated Recovery Performance Wave treatment in America. The relatively new mode of treatment involves a system that uses patented bio-electrical current along with active range-of-motion exercise techniques to speed up the body’s natural recuperative ability.

Dr Chris Hayes, who is the Dean of the Faculty of Pain Medicine at the Australian and New Zealand College of Anaesthetists, said a specialist pain clinic might see about 12 patients with the condition each year.

“It’s a very fascinating condition. There’s some milder forms and some more extreme forms,” Dr Hayes said.

He said CRPS could occur in response to a minor trauma, like a sprained ankle or wrist, and involved the nervous system and immune system being hyper-aroused or hyper-reactive. 

The condition emerged after World War I, when it was recognised in returned soldiers, particularly those with injuries to their nerves. “Causalgia” was the first name for it.

“What defines the diagnosis are things like swelling and change in temperature of the affected limb, colour change and change in sweating,” Dr Hayes said.

Doctors take a broad approach to treatment of CRPS, with the aim to re-train the brain, he said.

“Often [treatment involves] physical activity – putting weight on a leg, if it is a leg, or using an arm in a more normal way,” Dr Hayes said.

One of the more common treatments in Australia is “Graded Motor Imagery” – a rehabilitation process used to re-train the brain that can involve watching your limbs move in front of a mirror.

“Then there’s the psychological aspects. We would be keen to explore what else was happening psychologically around the time of that injury,” Dr Hayes said.

Ms Baxter’s friends have started raising funds via her online blog and have already raised nearly $30,000. 

The donations will go towards hyperbaric oxygen chambers, psychological treatment and treatment at the Neurological Relief Centre.

In a Facebook post on Monday, Ms Baxter thanked the public for their outpouring of support and said her health had been improving.

“A lot has happened even just in the last two weeks when it comes to CPRS,” she posted.

“It’s awesome we are raising awareness of this condition. But I also want to make it really clear that I have come really far. When I left the hospital two months ago, I was like a shell of a person.

“I’ve started a new therapy at the centre called ARP Wave and we are working really hard to rehabilitate my ankle and leg. The way I walk has improved a lot (I’m not limping anymore) and I’ve only been doing it for two weeks.”


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