Ankylosing spondylitis (AS) is most closely linked to 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 had back pain -- the joints in her toe, ankle, and knee swelled up. They became red, warm, and painful.
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 from 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.
Her 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, 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.
How to Spot AS in Your Other Joints
Look for swollen, red, warm, or tender joints and tendons. These are most often in the shoulder, knee, ankle, foot, and toe. The swelling and stiffness are usually worse in the morning but get better as you start moving. It can be tough to move the joint and can hurt when you walk.
Inflammation also happens where ligaments and tendons attach to bones. One example is your Achilles tendon. In other cases, a whole toe or finger might swell up.
Sometimes doctors may mistakenly believe people with AS have rheumatoid arthritis because their patients have issues with their other joints.
Doctors will work with you to get your AS under control with medications and may encourage you to do physical therapy.
AS in Your Hips and Shoulders
You may feel hip pain in your groin, knees, or thigh. Pain in your hip usually starts before age 16.
AS tends to happen less often in your shoulders.
Spondylitis in Ankles, Feet, or Knees
When these areas are inflamed, it can make it harder to walk.
In your foot, you can get plantar fasciitis. That’s when soft tissue on the bottom of your heel gets inflamed. You may feel sharp pain there, especially after standing up from sitting or lying. Stretching, night splints, shoe inserts, and supportive shoes can give you relief.
Your Achilles tendon can also get inflamed. That causes pain, redness, and swelling in the heel. Calf stretches, shoe inserts, and supportive shoes can help.
How AS Can Affect Your Eyes
Earlier this year, Gomez started having problems with her eye. “It got super-red, I couldn’t see, and it hurt so much,” she says.
She had uveitis, inflammation of the eye.
“I was used to not being able to use my hip,” she says. “But the uveitis immobilized me in a very different way.”
Uveitis usually happens in one eye. You can be sensitive to light, and it might affect your eyesight. An eye doctor can prescribe steroid and other eye drops.
Waiting too long to treat it can lead to vision loss, so watch out for eye symptoms.
AS and Your Gut
Inflammatory bowel disease is common with AS. About 2% to 3% of people with IBD also have ankylosing spondylitis. Tell your doctor if you have diarrhea, abdominal pain for more than 2 weeks, or bloody stools.
Nonsteroidal anti-inflammatory drugs (NSAIDs) can irritate your stomach and possibly cause stomach ulcers. Your doctor may prescribe another medicine to help prevent ulcers.