Though every moment of Rachael Caplan’s life is spent enduring excruciating pain, she has devoted herself to raising awareness of a relatively rare disease.

The pain consumes her entire body, even when she’s dreaming, leaving her essentially bedridden and confined to the top floor of her parents’ Thornhill home.

It wasn’t always like this. Almost as if in another life, Caplan, now 29, was the most athletic person in her family. She had a law degree and was working in Kingston, Ont., hoping to practice in family law before Complex Regional Pain Syndrome, or CRPS, began to spread throughout her body.

“It really is a mystery disease,” said Dr. David Shulman, a pain specialist at Wilderman Medical Clinic in Thornhill and one of Rachael’s doctors.

CRPS begins as what looks like an autoimmune disease, but after about six months it progresses into something else – a neurological disease where the nerves are injured, said Shulman.

“The pain is a very specific type of pain and it’s pain that would be typical of a nerve injury, in other words, if you bang your funny bone, that’s unpleasant and it’s like the funny bone is being banged constantly all day and all night,” he said.

“It could be tingly, could be burning, shooting, lightning type pain.”

It’s a disease that affects a little over 9,000 per year in Canada, with just over half of those affected in Ontario, said Helen Small, the executive director and co-founder of PARC, a patient advocacy organization.

Small founded the group, which tries to promote awareness of CRPS, in 2002 to help people struggling with the disease and reduce their feelings of isolation.

Symptoms of the disease are an intense, constant pain that usually starts in a hand or foot and then spreads. The affected area can be swollen and shiny, like a balloon being stretched. The area could sweat more, feel colder or hotter or change colour. Hair and nails can stop growing or grow very quickly. Bones can become brittle.

It can start with some sort of trauma, an injury or broken bone. Or even a stroke, an infection or just from wrapping a limb in a cast.

“It’s not just pain, which is the main symptom, but it’s basically your body starts breaking down, your nervous system, your immune system,” said Caplan. “I’m having a lot of trouble with my cardiovascular system, digestive system.”

Caplan first began experiencing symptoms seven years ago while she was in her first year of law school at Queen’s University.

She’d developed a nagging hip injury, but continued to live a normal life.

Two years later, in 2012, eager to begin snowboarding again, Caplan began receiving acupuncture treatment for about a month.

Instead of going away, her pain intensified.

“It just snowballed from there,” she said.

“Instead of ‘it went downhill,’ I call it going off a cliff.”

It took Caplan about a year and a half to get a diagnosis because everyone she spoke to – from chiropractors to doctors to osteopaths – focused on her hip and what was wrong with it.

It wasn’t until Caplan saw Dr. Shulman in June 2013, a year and a half later, that she got a diagnosis, on her 26th birthday.

And with CRPS, getting an accurate diagnosis as quickly as possible is crucial.

“It’s sort of like a train leaving the station,” said Small. “When it’s going slow you can catch it, but once it gathers speed it’s gone.”

In the first three months of the disease, there is an 80 to 90 per cent success rate in treatment, said Small. But often, doctors don’t know enough about the disease to be able to diagnose a patient so quickly.

“Sometimes if we pick (CRPS) up within the first six months we can try to help it reverse itself,” said Shulman, who is also a medical consultant for PARC. “After six months I think it’s pretty much game over with really no chance of reversal. The best we can do is try to alleviate the symptoms, but really cure, no.”

The prognosis is grim.

“The coping is different for each person. If you’re in constant pain it’s very hard to sleep, it’s very hard to think and it’s very hard to do anything,” said Small. “Constant pain will cause insomnia, it will cause memory loss, agitation and depression if it’s not handled properly.”

“Not everybody has the worst form of the disease, some of them have a very limited disease and they can get by. Probably the minority could even continue working, but that’s unusual,” said Shulman.

“I think the majority end up pretty much disabled and unable to work and with various use of walkers, canes whatever it takes they try to stay mobile, but some of them can’t.”

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Chronic pain in general shortens lifespan, added Shulman, sometimes through suicide or by causing immobile patients to develop illnesses they can’t fight.

“Five years in I’m in very, very bad shape. Very. Like I’m a severe case,” said Caplan. “Not everyone has it spread so much. It was unfortunate to get the illness and then I’m unfortunate to have it bad and I’m unfortunate that I haven’t found a treatment yet that works.”

But, somehow, Caplan seems unflappable.

“For me, it sounds funny to say this, but I am a happy person and I just told myself to keep going and that there has to be a way to get out,” she said.

“Also I’m really motivated by my family and friends … they’re so positive and they’re so optimistic and so supportive,” she said.

Caplan’s friends created a Facebook page to detail her journey and keep in touch. Caplan herself can’t use a computer anymore and doesn’t update it herself, but “it’s her voice within her bedroom,” said Caplan’s childhood friend Brittney Hofbauer, 29.

Last month, Caplan’s friends and family started sharing videos of themselves holding their hands in a container of ice water for a minute to mimic the feeling of CRPS and sharing it on social media to promote awareness of the disease.

The challenge had been done before for CRPS, but Hofbauer and other members of Caplan’s support group were hoping to gain more traction this time and they added the hashtag #AceThisFire.

Fire, because Caplan’s pain feels like fire is burning her.

“We used the hashtag Ace This Fire because it’s an affirmation and a motto that Rachael really lives by so it was to make it more personal to Rachael’s story,” said Hofbauer.

So far, the videos shared have over 20,000 views.

It’s “about raising awareness to get people to think what is CRPS and maybe to get other people going to research about it …to make the community feel less alone,” said Hofbauer.

“I don’t feel like I have a choice. I didn’t choose this, but I have to help the cause, I have to help raise awareness, I have to connect with others. It’s just what I have to do,” said Caplan.

Typical treatments haven’t worked on her. Physiotherapy, one of the key tools in treatment, made her feel worse. Drugs like opioids which are used to help lessen pain to allow for physiotherapy also aggravated her pain.

The search for a treatment has sent Caplan to about 60 healthcare providers to seek both mainstream and alternative therapies and it’s sent her on trips to the U.S. in search of someone who can stop her pain.

Recently, she began green light therapy, which uses green LED lights in her room to help with the pain.

“It’s been a game changer for me with the pain in my head,” said Caplan, who after years of insomnia has been able to sleep for as much as nine hours a night since she began at the beginning of March.

“To me anything that chips away at all these different health problems I’ve developed is amazing,” she said. “I usually have bad reactions so when I have a good reaction to something, to me it’s a miracle.”

Caplan hopes that by sharing her story other people will get quicker diagnoses, more treatment options will become available or a cure will be found. Ultimately, she hopes to somehow find a way to go into remission.

“I just feel like the world is out there waiting,” said Caplan. “I want to live. I’m turning 30 in June… I want to learn, I want to connect with people. I want to connect with nature. I like the simple things, I really do.”