Jennifer Morley

Jennifer Morley

Foundation established to shed light on pain syndrome

NANAIMO – Sufferers describe burning feeling when talking about Complex Regional Pain Syndrome.

It’s in the slight shift in her seat, the breath she expels in a soft, measured exhale and her slow and laboured gait when she gets up to walk.

Without those small signs, you might never know 39-year-old Kate Palmer is in pain.

And that’s the problem.

The pain experienced by Palmer and Jennifer Morley, co-founders of Nanaimo’s new CRPS Hope and Awareness Foundation, is largely invisible and not well understood.

They have complex regional pain syndrome, a condition where patients feel more pain than they should for the physical trauma they experienced.

Dr. Karl Muendel, Nanaimo’s pain clinic director and co-chief of pain for Island Health, calls it a dis-regulation of the nervous system and doesn’t know why it happens. Neither is it known why certain people are more prone to it, so it’s tough to work on prevention and treatment, he said.

But there are criteria for the condition, and he said it’s a legitimate issue where patients have pain and are not functioning. There is no cure.

Think of an extremity that just got burnt, he said. There’s very, very sensitive skin; often if CRPS is in the foot, that foot can’t even touch the sheets.

Two years ago, there were 90 active patients at the pain clinic with CRPS. Today, Muendel believes there are more, although updated statistics are not available.

For Palmer and Morley, this condition has taken over the lives they used to live, affected their careers and their home life. Palmer can’t remember the last time she hasn’t cried, and their families have had to pick up the things that they are no longer able to do, like cooking and laundry. There’s guilt and grief, they say.

And then there’s the pain.

“I am constantly aware of the burning,” said Palmer, who explains that it feels like the bones in her feet are broken. Her hands are burning and sweating but cold to the touch and mottled white and red and she’s exhausted.

“It’s really a horrendous experience,” she said. “The deep breaths are just me trying to manage it. It becomes so overwhelming.”

She’s had CRPS twice before in her limbs – once after a surgery and the other when she broke her wrist snowboarding – but since her third diagnosis three years ago, it’s spread into both arms and legs and she doesn’t see the pain going away.

“That’s always the thing we come up against. How can you be in that much pain and still function?” she asked. “The reality is, we can put on a really brave face and we can be quite good at hiding it and behind closed doors it’s a different story.”

She said there are days when she wants to tattoo flames and barbed wire all over her body, just so people would get what it feels like.

Morley, 40, was diagnosed when the pain of a shoulder surgery didn’t go away, but it took five years and multiple specialists.

“We quite often get told it’s all in our heads and you just have low pain tolerance and those kinds of things,” she said, adding the goal through the new foundation they’ve started up is to make sure when they run into someone on the street, they help that person understand CRPS is a real disease.

The co-founders want health-care professionals to be more aware of the condition and the diagnostic criteria so they can make referrals resulting in earlier diagnosis and treatment. They also see general awareness as being a launch to funding, treatment and research, as well as understanding.

Muendel said research is happening at the university level for CRPS, but getting funding for more research would be helpful.

“You see someone that’s been two years out with untreated CRPS and they never got the treatment early on and how to cope with their pain and that they actually should rehabilitate and use the extremity rather than just waste away,” he said.

The foundation will show the documentary Trial by Fire on Aug. 31, at 7 p.m. at Beban Park social centre. For tickets, please e-mail CRPShopeandawareness@gmail.com.