Living With Ankylosing Spondylitis Through the Years: Elizabeth’s Story
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Excruciating lower back pain sometimes reduced kindergarten child care worker Elizabeth Burns to lying on the kitchen floor in tears. As a new teacher in her early 20s, Burns blamed long days and the burden of child care for her back pain. Her family doctor told her the pain was probably due to scoliosis in her upper spine. And despite visiting numerous back specialists, Burns didn’t receive an accurate diagnosis of ankylosing spondylitis (AS) until she was 40.
Ankylosing spondylitis is a type of arthritis that affects the spine, causing pain and eventually limiting movement. A delay of years between symptoms and diagnosis is not unusual, according to research published in the July/August 2012 issue of the journal Clinical and Experimental Rheumatology. Symptoms of AS typically appear anywhere between a person’s teen years and early 30s. But as more research goes into understanding the genetics, symptoms, and treatment of ankylosing spondylitis, the delay between symptom onset and diagnosis for people with the condition becomes less.
Without a diagnosis, Burns says she and her doctors were operating in the dark. Doctors prescribed a small pharmacy’s worth of pain medications and muscle relaxers. “If you took all the medications I was given, you wouldn’t be able to function in a kindergarten classroom,” she says. She had to pick and choose her daily strategies, and many days she accepted a degree of pain so she could work as well as be a mother to her three young daughters. She also found that her lower back pain — a hallmark symptom of ankylosing spondylitis — sometimes went away for a period of months before returning.
Finding What Works for Her Ankylosing Spondylitis
Instead of prescription medications, Burns now manages her ankylosing spondylitis with the occasional over-the-counter pain medication and a no-starch diet that reduced her symptoms significantly. She stopped eating legumes, rice, potatoes, starchy vegetables, bread, pasta, and any product containing starch. She says she moves as freely as she once did in her early 20s.
Burns says her inspiration to take control of the condition through her diet came from one of her daughters, who is in her early 20s and likely also has AS. Her daughter had good results after cutting out gluten, dairy, and soy out of her diet. “For the last six years on this diet, I’ve been stunned that there’s no pain, which is just absolutely mind boggling. It’s a huge relief,” she says. But it’s been quite a journey.
Searching for a Diagnosis
When Burns was in her 30s, she saw her family doctor, chiropractors, and even a rheumatologist who didn’t diagnose the condition correctly. All the while, the pain would arrive and make her miserable, only to disappear again. “It’s a strange way of living, periods of complete remission,” she says. “I think people with ankylosing spondylitis live with an illusion that it’s getting better, until it progresses. There’s always that hint of hope.”
By the time she reached 40, she had severe pain in both feet, shortness of breath when she was excited, and pain in her chest that felt like a heart attack. The chest pain required three hospitalizations, but each time she learned her heart was fine.
After nearly two decades of these symptoms, Burns felt like a medical mystery. She’d been to multiple doctors, tried numerous medications, and got no answers. Finally, she started challenging her doctors. “I told them there’s no way it could be different diseases causing all these symptoms, and asked what would be their best guess,” she says.
She went through another intensive diagnostic process, with X-rays from top to bottom, and finally learned that she had ankylosing spondylitis, a condition that not only caused her worsening back and foot pain, but had made her chest cavity rigid enough to cause both asthma-like and heart attack-type symptoms. She also found out that she could get more effective treatment now that she had a confirmed diagnosis of AS.
Over the years, Burns began to meet other people with ankylosing spondylitis and was able to share ideas about treatment and living more comfortably with the condition. “What I’ve learned is to talk and keep talking, until you get answers. Let’s keep this dialogue open, let’s keep sharing what we know,” she says.
Video: IN MY BONES - Living with Ankylosing Spondylitis
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