About 1% of the US population has axial spondyloarthritis (axSpA), a rare form of inflammatory arthritis that can cause severe joint pain, muscle spasms, stiffness, and discomfort throughout the body.
There are two main subtypes. Those with non-radiographic axial spondyloarthritis (nr-axSpA) experience symptoms, but their spinal inflammation doesn’t appear on X-rays. However, with ankylosing spondylitis (AS), a more advanced form of the condition, inflammation is visible on X-ray imaging, and over time the spine’s vertebrae may begin to fuse.
No matter which type of axSpA you have, you know that managing the symptoms can play a significant role in your day-to-day life. Although medication is often a piece of the treatment puzzle, many people also turn to self-care strategies and lifestyle modifications to help alleviate pain, reduce flares, and support their physical and mental well-being. We spoke with four people who have axSpA about the strategies they use to manage and prevent flares, which just might work for you too.
1. Lean into movement, even when it feels a bit uncomfortable.
When your body feels stiff, swollen, and achy, it can seem counterintuitive to exercise. However, for many people with axSpA, gentle movement is precisely what helps loosen their joints, reduce pain, and prevent flares.
“The more I sit around and don’t move my body, the more I feel myself stiffen up,” says Steven Rowland, 38, a fantasy author living with axSpA in St. Louis, Missouri. That’s why he commits to regular weight training and 15 minutes of yin yoga at least five nights a week. This type of yoga practice involves holding passive poses for extended periods and engaging in deep breathing to stretch the muscles and release tension. He also walks his dog for nearly a mile three times a day, which helps keep his body limber.
Amanda Vaught, 29, a health care administrator in Columbus, Ohio, who lives with nr-axSpA, also leans on walking and yin yoga, along with doing light weight training with her physical therapist, though it’s taken time to build up to where she is now. “I was just telling my physical therapist that one year ago I could only walk on the treadmill for three minutes—I was in so much pain,” she recalls. “Now I can walk two miles, and I can bend over comfortably. I’m also doing deadlifts with 10 pounds.”
Still, it’s important to note that those with axSpA need to be careful not to overdo it because pushing too hard during a workout can backfire. But with patience, consistency can pay off. After more than a year of steady weight training, Rowland recently added CrossFit to his workout routine. “I feel like I’m at a pretty good level of fitness at the moment, but it’s definitely taken me a while to get back here,” he says.
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2. Use cold or heat to ease discomfort.
Sometimes the simplest remedies are the most effective. Take Charie Wyatt, 49, a former airline employee from Catonsville, Maryland. When she has AS flares, she often feels like she has the flu and experiences symptoms like full-body aches, muscle cramping, and joint stiffness in her hands, feet, and knees. For her, heat therapy has been a lifeline. “I love going to a warm pool or taking a warm bath, going to a sauna, or getting in a Jacuzzi,” Wyatt says.
Heat therapy is also Carla Miller’s go-to form of self-care. A 45-year-old former school psychologist from Philadelphia who lives with nr-axSpA, she says long baths and hot showers help alleviate everything from minor soreness to the full-body pain that accompanies her flares. During flares she also performs gentle ankle and shoulder mobility exercises using a resistance band. The warm water helps ease her muscle tightness and joint stiffness as she gently works through these movements while seated in a shower chair. “I have a really nice showerhead that’s huge,” she says. “I feel like a different person after.”
Rowland, on the other hand, prefers alternating between hot and cold therapies. While he hasn’t had a major pain flare recently, he does often feel a burning sensation in his shoulder. “My first line of defense is usually an ice pack. I have one that straps around my body, so I’ll put it right on the shoulder and lie in bed for a little bit, and that really kind of numbs it and brings down the pain,” he says. On other days he opts for warm Epsom salt baths to release muscle tension. And if the pain is especially intense, he’ll do both.
3. Try alternative therapies and remedies to soothe pain.
In addition to nr-axSpA Vaught has fibromyalgia, spinal stenosis, and myofascial pain syndrome. She turned to holistic medicine nearly five years ago because at the time she was taking a lot of steroids to manage her full-body pain. Concerned about the risks of using these medications long term, she sought out both an integrative doctor and a naturopath to explore other ways to manage her symptoms.
Vaught says her friends jokingly call her a homeopath because she has an entire cabinet filled with tinctures and supplements thought to help ease inflammation, including ashwagandha and fish oil. She also puts turmeric in nearly everything she eats—so much so that she stained the counters in her last apartment. More recently, she’s started taking L-methylfolate (a form of folate, or vitamin B9), which has been shown to help regulate mood when taken alongside an antidepressant. Other forms of complementary medicine have also been beneficial for her, including acupuncture, which she says has helped ease her back pain.
She’s not alone in experimenting with alternative treatments. Some of Wyatt's toes curve into a claw because of her AS-related inflammation, pain, and muscle spasms. But she’s found relief in a toe-separating technique her physical therapist suggested she do with socks, weaving them between her toes to stop the digits from crossing. Now she relies on a simple pedicure spacer to help keep discomfort and spasms at bay.
Before adding any supplements or alternative treatments to your routine, consult your doctor. They can help ensure there are no harmful interactions with your current medications or therapies and advise you on a safe and appropriate dosage.
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4. Engage in calming practices and hobbies you enjoy.
Stress is a major trigger for many people with axSpA, which means keeping anxiety and stress levels as low as possible can be as important as physical care.
Vaught turns to breath work when she’s feeling anxious or having a flare. “I do a lot of systematic breathing that I learned from my massage therapist,” she says. “If you plug your right nostril and breathe just through your left nostril, it helps calm me down and release fascia tension.”
Others also find creative expression soothing. Miller used to attend weekly music and art therapy sessions, and she’s kept up with one practice in particular: pour painting. As the name suggests the technique involves pouring paint onto a canvas to create designs. “You just hold [the cup of paint], and it drips onto the canvas, and it’s seriously mesmerizing. It makes the most beautiful colors,” she says.
Related: Why Knitting (and Hobbies Like It) Can Make You Calmer, Sharper, and Happier
Wyatt also leans on creativity to take her mind off her physical discomfort. When she’s feeling up to it, she knits or makes balloon arches for parties and events. Music is another source of comfort. “I always listen to faith-based music,” Wyatt says. At church she sometimes rocks and hums during services, which helps shift her focus away from whatever pain she’s experiencing.
5. Lean on your community.
Sometimes healing comes from knowing you’re not alone on this journey. Miller and Wyatt cofacilitate a Connect Group through the Arthritis Foundation. The program gives people with axSpA resources, tools, and support to manage flare-related pain, seek treatment, and care for their mental health. Both women love being a part of it because it gives them the chance to help others going through the same thing—even if their symptoms are slightly different.
Rowland unexpectedly found a sense of community by penning feel-good fantasy novels. “My most popular book, Cursed Cocktails, is about a blood mage who has chronic pain from using his magic, and I based all of the pain that he experiences on my own experience with an autoimmune disease,” he says. Readers have told him how much that representation means to them. “They’re like, ‘I’m so glad I read this. There’s not a lot of chronic-pain representation in fiction, and I feel like I’m seen,’” Rowland says.
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