What We Learned From Pain of Ankylosing Spondylitis
Soul search after diagnosis
Ankylosing spondylitis (AS) came to Lovaine Cohen with speed and force.
Cohen was in her twenties when she gave birth to her first child, a daughter. After becoming a mother, Cohen’s lower back started to hurt. Soon she couldn’t walk without limping. Eventually, Cohen needed a cane to get around.
Then, at age 31, after her pain mounted in her upper back, Cohen learned that she had AS, a type of arthritis of the spine. She had tested positive for human leukocyte antigen B27 (HLA-B27), a gene found in almost all people with AS.
The news came as a relief “because I finally had a name for what was going on with my body,” says Cohen, 52, a health and wellness coach in Toronto.
By her late thirties, Cohen’s pain had become unbearable and she needed heavy medication. Unable to get around easily, she quit her job as a financial services associate. Her rheumatologist sent her to an arthritis hospital for x-rays. They revealed that Cohen’s right hip had very little cushioning cartilage and his left hip did not.
Surgery changes life
So at 39, Cohen needed a new left hip. His surgeon told him it was the worst case of inflammation he had ever seen.
When she woke up from the operation, something was different. The pain was gone.
“It was life changing because for 4 or 5 years the pain escalated,” she says. “I was depressed. I didn’t have good thoughts about my future because of the pain. But surgery changed everything.
The rehabilitation was exhausting. Cohen had to relearn how to walk and build muscle strength. For 7 months, she needed physical therapy three times a week. Cohen also needed a special pillow to support his posture and help him heal.
All the while AS continued on their damage lane. Almost a year later, Cohen also needed a replacement for his right hip.
New hips and a new career
It took a while for Cohen to accept that she was a woman in her forties with two artificial hips.
“I always had a victim’s mindset,” she says.
She wondered why AS had to happen to her. But as Cohen learned more about pain management and how to coexist with his illness, his perspective began to change. She started to focus more on her own role with AS and the things she could control.
Cohen also took a holistic, or holistic, view of his health. She realized that any aspect of her life could send ripples through everything else. She was no longer excited about her job. In January 2019, she quit her job in the financial services industry and began preparing for a new career as a health and wellness coach. Cohen thanks AS for leading her down a new path.
“Maybe I had to go through what I’ve been through to turn around,” she says.
Today, Cohen helps people with autoimmune diseases manage their pain and inflammation. She believes that positive thinking can change the way she perceives and reacts to pain.
Cohen urges anyone newly diagnosed with AS to educate themselves as much as possible. For example, read how diet can affect illness. Cohen knows she feels best when she limits sugar, fruits, carbs, and meat. She has her blood checked every 3 to 4 months and takes a TNF inhibitor. She also walks and does low impact aerobics and strength training every day.
“You have to start thinking about changing your attitude about your pain,” Cohen says. “The biggest battle in dealing with chronic pain is developing your mind to the point that you can deal with pain and stress.”
“I’m in the driver’s seat and the pain is in the backseat.”
Pain and doubts of a doctor
The first signs of Deverell Dotos’ AS showed just how sneaky the disease can be.
Dotos, a New Yorker of Jamaican descent, was just 22 and was working as a project manager at Ernst and Young when he noticed he was having trouble with simple tasks. He struggled to climb the subway stairs during his daily commute. He lacked the strength to easily open the doors or scoop up a gallon of milk.
These mysterious initial symptoms moved to other parts of his body. Dotos fell so often that he couldn’t walk without a cane. He consulted with his GP about the stiffness, pain and intense heat that was going through his body. Dotos’ doctor seemed skeptical of his pain complaints.
“You [start to] don’t trust yourself. I knew my body was different, but I had to listen to my doctor, ”Dotos explains. The pain got worse and none of the medication helped. After 2 years, his doctor told him that he couldn’t do anything more for Dotos, and that it was all in his head
Finally a diagnosis, but still no treatment
“I have a stubborn nature,” Dotos says, “and I was determined to find out what was going on.”
He found a new primary care physician at Mount Sinai in New York. He also saw an oncologist, a rheumatologist and a gastroenterologist. Tests suggest muscular dystrophy. But nothing was conclusive.
During that 2 year period, Dotos’ pain and unexplained symptoms exhausted him both physically and mentally. His social life came to a halt as his world shrank at home. Dotos channeled his precious energy into two things: dealing with his pain and finding out why he was in pain.
He asked his doctor for an x-ray of his spine. He showed damage to his lumbar spine in his lower back and to the padding discs between the joints. Then Dotos joined an online group where he shared his experience. Someone suggested he take the HLA-B27 test.
Dotos was elated when this 2010 test came back positive for the genetic marker of AS. It had been 4 years since her first symptoms of AS. The diagnosis ultimately explained why he felt his body was collapsing. Delighted, Dotos expected him to take pills to treat it. His dark-faced rheumatologist on Mount Sinai explained that AS was a potentially serious disease without treatment.
Dotos tried a wide variety of medications to ease his pain. Nothing helped. On his last visit to the rheumatologist, Dotos struggled to sit in the waiting room. Once again, her doctor said nothing could be done.
A new vision of pain and a transformation
This devastating verdict marked a turning point.
Dotos decided that if he had to live with the pain, he wanted to do it in a beautiful place. He sold all of his belongings and bought a one-way ticket to Cape Town, South Africa. He didn’t know anyone there. But he had long felt an attraction to the natural beauty and cultural dynamism of Cape Town.
“For me, this is where the transformation happened,” Dotos says. He spent a lot of time just sitting, enjoying the view of the ocean, mountains, and people laughing. He felt happy. Instead of feeling dying, Dotos could feel the fusion of his mind and body.
Cape Town is also where Dotos reengaged for hot yoga, which he had practiced in New York. The heat and stretching exercises helped relieve his pain and made him more flexible and his spine stronger. In the warm room, Dotos began to rethink his injured body. He stopped using the word pain. Instead, he calls it discomfort.
“You are on a spectrum” of pain, he said. “In case of discomfort, you can move towards comfort.”
After almost a year, Dotos returned to New York. Instead of returning to a corporate job, he became a certified hot yoga instructor. Before the pandemic, he traveled across the country teaching in various hot studios. Dotos emphasizes the importance of building a strong core to tighten the stomach muscles and building a strong cushion to protect the spine.
Intense yoga is Dotos’ only AS treatment. He practices different types of yoga four to five times a week for 90 minutes and sometimes up to 5 hours. It has a nutritious diet and limits preservatives, starches and sugars.
It has been 10 years since Dotos, 36, learned of his diagnosis. The hopelessness he felt at first is long gone.
He now wonders “if AS is a superpower.” If we can stop seeing it as chronic pain but as something that we are strong enough to endure.
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