Ankylosing spondylitis (AS) is a type of inflammatory arthritis that causes swelling in ligaments and joints of the spine.

If you have AS, this swelling can lead to periods of time of back pain and stiffness. In more severe cases, it can lead to debilitating pain and loss of spinal mobility and flexibility.

You may also have pain and stiffness in other areas of the body as well, including your hips, ribs, knees, and shoulders. As it progresses, it can also affect other organs, such as the eyes, colon, and others.

Anyone can develop AS, but it’s more likely in men over age 45 who have a family history of AS.

While AS has no cure, there are treatments and lifestyle changes that can help you or anyone with AS manage pain and inflammation, slow the progression of AS, and live your best, most fulfilling life.

We talked to one person with AS, Roselyn Tolliver, who has figured out how to continue living her life in spite of the diagnosis.

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Image provided by Roselyn Tolliver

Roselyn was 12 years old when she first started developing symptoms of AS. “My first symptoms were lung inflammation and persistent neck and shoulder pain,” she says.

Two years later, Roselyn says that she experienced an unexplained viral illness for 3 months. Soon after, she developed severe, recurrent, and unexplained fatigue.

Despite her health woes continuing in early adulthood, Roselyn joined the Navy. While serving, she developed new problems, including digestive issues.

Over the next 28 years, Roselyn’s health continued to trouble her and baffle doctors as she developed joint pain and swelling in the iris of the eyes known as iriritis.

“Despite a strong family history of AS (my father and brother had it), I didn’t get diagnosed until 2018 because I am HLA-B27 negative,” she explains.

By the time doctors diagnosed her, she had already undergone 10 joint surgeries, numerous pain injections, and suffered permanent damage to several joints.

Despite the delay in diagnosis and several treatments, she still takes time to be active and enjoy her time.

“I’m no longer able to do some of the strenuous activities I used to do (golf, skate, ski, etc.), but I try to be as active as I can every day. Some days I just do housework and dance around, but I don’t sit in my recliner until 9 pm every day — unless I’m having a lot of pain.”

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Image provided by Roselyn Tolliver

She also has routine and regular exercise routines.

“I also have a stretching routine that I do in bed every morning and night, and my husband and I usually walk our dog 2 to 3 miles around our neighborhood at least 3 to 4 times a week. If he’s busy or it’s too hot outside, I walk the mall with my headphones on.”

While being active, she has to take some steps to help with pain. “I have to wear a knee brace every time, and sometimes I also wear my SI joint or elbow brace. If I’m really bad off, I use a cane.”

She also spoke about going swimming in summer months. Many experts point to water exercise as a good way to ease joint pain. And while this may be true for some, Roselyn finds that it isn’t much easier on her joints.

When possible, she loves taking time to be outside. “We try to get outside every day, weather permitting. We go for a walk when it’s not 100 degrees and go swimming when it is. We also go on walking tours close to home and love to travel and go sightseeing.”

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Image provided by Roselyn Tolliver

But there’s a downside to all the activities she does. “Trying to stay active has led to multiple joint surgeries,” she explains.

“Every time I get in a groove with an activity (usually a few months) something flares or gets injured, and I have to stop.

“This happened when my husband and I were riding our bikes regularly. My knee and elbow got so bad that I had to stop riding. I had open elbow surgery in 2020, and I’m scheduled for knee replacement in September. I keep getting back up on the horse, though!”

Her positive attitude, despite some setbacks, makes a lot of sense. She attributes her activity level to helping her stay “flexible and able to endure long days“ including recently helping her son and his fiancé plan their wedding at her house and caring for her grandchild.

During this time, she says, “I was active from 7 a.m. until 10 p.m. most days for months.”

Exercise provides her with both physical benefits and mental health benefits. “My husband and I discuss all sorts of things on our 1- to 2-hour walks, and when I walk alone, listening to my favorite music, it’s very therapeutic.”

Roz Tolliver, a native San Franciscan, is married and has five adult children and three grandchildren. Since her diagnosis, she has become an advocate for other spondies. First, she co-led the Sacramento SAA support group until December 2019 when she relocated to Merced, CA, and started a new group there. Since then, she has been featured in several AS awareness projects. She finds helping others afflicted with her disease to be empowering and therapeutic.