What We Learned From Pain of Ankylosing Spondylitis

Soul Searching After a Diagnosis

Ankylosing spondylitis (AS) came for Lovaine Cohen with speed and force.

Cohen was in her 20s when she gave birth to her first child, a daughter. After she became a mother, Cohen’s lower back began to hurt. Soon, she couldn’t walk without a limp. Eventually, Cohen needed a cane to get around.

Then at age 31, after her pain had climbed to her upper back, Cohen learned she had AS, a type of arthritis in the spine. She had tested positive for the human leukocyte antigen B27 (HLA-B27), a gene found in almost everyone 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 30s, Cohen’s pain had turned unbearable and she needed heavy medication. Unable to get around easily, she quit her job as a financial service 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 that her left hip had none left.

Surgery Is Life-Changing

So at age 39, Cohen needed a new left hip. Her surgeon told her 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 was grating,” she says. “I was depressed. I didn’t have good thoughts about my future because of the pain. But the surgery turned everything around.”

Rehabilitation was grueling. Cohen had to relearn how to walk and to build up her muscles strength. For 7 months, she needed physical therapy three times a week. Cohen also required a special pillow to support her posture and to help her heal.

All the while, AS continued on its path of damage. Almost a year later, Cohen needed her right hip replaced too.

New Hips and a New Career

It took time for Cohen to accept that she was a woman in her 40s with two artificial hips.

“I still had a victim mindset,” she says.

She questioned why AS had to happen to her. But as Cohen read more about managing pain and how to co-exist with her disease, her perspective started to shift. She began to focus more on her own role with AS and on the things she could control.

Cohen also adopted a holistic, or whole-body, view of her health. She realized that any aspect of her life could send ripples through everything else. She was no longer excited by her work. In January 2019, she quit her job in the financial services industry and started preparing for a new career as a health and wellness coach. Cohen credits AS for steering her into a new path.

“Maybe I had to go through what I went through to turn myself around,” she says.

Today, Cohen helps people with autoimmune diseases manage their pain and inflammation. She believes that positive thinking can change how she perceives and responds to pain.

Cohen urges anyone newly diagnosed with AS to educate themselves as much as possible. For example, read about how diet can affect the disease. Cohen knows she feels better when she limits sugar, fruit, carbohydrates, and meat. She gets 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 fighting chronic pain is developing your mind to the point where you can cope with the pain and stress.”

“I’m in the driver’s seat and pain is in the backseat.”

Pain and Doubts From a Doctor

The first signs of Deverell Dotos’s AS showed how sneaky the disease could be.

Dotos, a Jamaican-born New Yorker, was just 22 and working as a project manager at Ernst and Young when he noticed that he was having trouble with simple tasks. He struggled to walk up the subway stairs during his daily commute. He lacked enough strength to easily open doors or pick up a gallon of milk.

Those mysterious initial symptoms moved on to other parts of his body. Dotos fell so often that he couldn’t walk without a cane. He consulted his primary care doctor about the stiffness, pain, and intense heat that shot through his body. Dotos’s doctor seemed skeptical about his complaints about pain.

“You [start to] not trust yourself. I knew my body felt different, but I had to listen to my doctor,” Dotos says. The pain got worse and none of the medications helped. After 2 years, his doctor told him there was nothing more he could do for Dotos, and that it was all in his head

Finally a Diagnosis, but Still No Treatment

“I have an obstinate nature,” Dotos says, “and I was determined to find out what was going on.”

He found a new primary care doctor at Mount Sinai in New York. He also saw an oncologist, a rheumatologist, and a gastroenterologist. Tests suggested muscular dystrophy. But nothing was conclusive.

During this 2-year period, Dotos’s unexplained pain and symptoms wore him down physically and mentally. His social life came to a stop as his world shrank to his home. Dotos channeled his precious energy into two things: tending to his pain and finding why he hurt.

He asked his doctor for an x-ray of his spine. It showed damage in his lumbar spine in his lower back and to the cushioning discs between the joints. Next, Dotos joined an online group where he shared his experience. Someone suggested that he get the HLA-B27 test.

Dotos was thrilled when that 2010 test came back positive for the genetic marker for AS. It was 4 years since his first AS symptoms. The diagnosis finally explained why he felt as though his body was falling apart. Elated, Dotos expected he would take pills to treat it. His grim-faced rheumatologist at Mount Sinai explained that AS was a potentially serious disease with no cure.

Dotos tried a wide range of medications to dull his pain. Nothing helped. On his last visit to the rheumatologist, Dotos had trouble sitting in the waiting room. Once again, his doctor said nothing could be done.

A New View of Pain and a Transformation

That devastating verdict proved a turning point.

Dotos decided if he had to live with pain, he wanted to do it someplace beautiful. He sold all of his possessions and bought a one-way ticket to Cape Town, South Africa. He knew no one there. But he had long felt a pull toward Cape Town’s natural beauty and cultural vibrancy.

“For me, that’s where the transformation happened,” Dotos says. He spent a lot of time simply sitting, soaking up the view of the ocean, mountains, and people laughing. He felt happy. Instead of feeling like he was dying, Dotos could feel the melding of his mind and body.

Cape Town also is where Dotos recommitted to hot yoga, which he had practiced in New York. The heat and the stretching exercises helped ease his pain and made him more flexible and his spine stronger. In the hot room, Dotos started to rethink his hurting body. He quit using the word pain. Instead, he calls it discomfort.

“You are on a spectrum” of pain, he says. “In discomfort, you can move towards comfort.”

After almost a year, Dotos returned to New York. Instead of going back to a corporate job, he became a certified hot yoga instructor. Before the pandemic, he traveled around the country to teach at various hot studios. Dotos stresses the importance of building a strong core to tighten the stomach muscles and to build a solid cushion to protect the spine.

Intense yoga is Dotos’s only AS treatment. He practices various types of yoga four to five times a week for 90 minutes and sometimes up to 5 hours. He eats 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 in the early days is long gone.

He now wonders “if AS is a superpower. If we can stop looking at it as chronic pain but as something that we are strong enough to endure.”