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Arthritis Health Center

Beyond the Back

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WebMD Feature
Reviewed by David Zelman, MD

Most people with ankylosing spondylitis (AS) know about back pain. But other areas of your body can swell and hurt, too.

That’s what happened to 23-year-old Stefanie Gomez. When she was 15 -- before she ever had back pain -- the joints in her toe, ankle, and knee swelled up. They became red, warm, and painful.

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It’s pretty common for AS to first show up in places other than your spine. That’s especially true for people who are younger than 16.

It wasn’t long before Gomez, now a social worker in San Francisco, had problems in her sacroiliac (SI) joints. Those are the places where your spine meets your pelvis. Everyone with AS has inflammation in at least one of their SI joints.

Since then, Gomez has had painful flares in her hip about twice a month. “Sometimes I’m late for work because of a flare-up, or I avoid seeing friends because I know I’ll be in pain,” she says.

Gomez’s main triggers are cold weather, stress, and poor eating.

“At the first sign of stiffness, I get in the shower and the pressure of the water helps me get back to moving,” she says.

Ankylosing Spondylitis Is an All-Over Problem

“This is a systemic disease that affects the whole body,” says Lianne Gensler, MD. She's the director of the Ankylosing Spondylitis Clinic at the University of California, San Francisco. So don’t be surprised when other areas of your body become affected, she says.

Here’s how many people with AS get symptoms beyond their SI joint:

  • Middle to upper back: 50%-70%
  • Neck: 75%
  • Eyes: 40%
  • Heel or shoulders: 30%
  • Knees: 20%
  • Wrist, toes, or fingers: 5%

Having symptoms in places other than your back can mean that you have a more serious form of the disease. Knowing how to spot the signs can help you get treatment sooner and hopefully prevent further damage.

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