Everyone’s experience with ankylosing spondylitis is unique, so zeroing in on what will give you relief may take some detective work, says Delamo I. Bekele, MD, a rheumatologist at Mayo Clinic in Rochester, Minnesota. “What works for one person might not work for others,” he says, so it’s smart to take a trial-and-error approach. But the payoff can be enormous. Dr. Bekele’s “prescription” for people with this inflammatory type of arthritis: “Be open to just trying things until you hit the spot for your kind of pain.” And then prepare yourself, with the right equipment and tools at home, to bring the idea to fruition. Here’s a list of 13 little things that two women with ankylosing spondylitis have found helpful for handling the physical and emotional impact of flares. Some might just work for you, too.

  1. Try a grabber tool. During an ankylosing spondylitis flare, bending over or down to pick up a toy or pillow or anything else can be torture. These are moments when Lisa Marie Basile, a 34-year-old healthcare journalist in New York City who was diagnosed with ankylosing spondylitis in 2017, is glad to have her Nifty Nabber. Variations abound, but the concept is simple: a stick with a clip at the end that you can pick things up with. “It seems really silly,” says Basile, “but sometimes it’s just impossible to bend over much.” This handy tool makes the movement unnecessary.
  2. Use a backrest. Rest is key during a flare, but who wants to spend every waking hour flat on their back? During flares, Steff Di Pardo, a 25-year-old health writer who lives near Toronto, solves this problem by putting her soft yet sturdy Husband Pillow to work. The contraption allows her to sit up comfortably in bed, with firm support for her arms and back. “It helps a lot,” she says, and she uses it often.
  3. Patch the pain. Stuck sitting in a car or airplane seat during a flare? Basile says placing a cooling pain-relief patch on her back (or another sore area) can be “pretty amazing. It can really help take the edge off the pain from being immobile for so long.” She says it also helps her move more freely when she finally does get up. Mid-flare, “I constantly have [patches] with me,” she says. “If I wake up with spasms, it’s like the holy grail.” In addition to patches, cooling pain-relief products come in gel, spray, and foam formulations. They start to deliver relief within two to three minutes, Basile says.
  4. Experiment with heat. For Di Pardo, heat offers more pain relief than cooling does. “Heating pads or hot packs are like my best friends if I’m in pain,” she says. The difference is yet another example of how flares are experienced in a very personal way and that trial and error can lead to the best solutions for you.
  5. Sit in your shower. “It feels like something a grandparent would have,” says Basile of the plastic chair she places in her shower during a flare. “But sometimes it’s like the best thing in the world, because standing [through a shower] when you’re in that much pain is impossible.” Once the flare passes, she stashes the chair in the closet, out of sight. But she knows where to find it at the earliest sign of a flare. You can find a light yet sturdy and rust-resistant shower chair online and at gardening supply outlets.
  6. … and in your bathroom. The little stool Di Pardo keeps in her bathroom gets extra use when she’s in a flare. She uses it to “kneel or sit on while I brush my teeth, wash my face, and do all that. And If I’m too tired, I’ll just pull that up and sit on it in front of the sink. It really helps.”
  7. … and in your kitchen. “Little things like the high stool in my kitchen make things a lot easier [during a flare],” says Di Pardo. They help get her off her feet and save her from having to stand while cutting things or cooking at the stove. The ideal height of the stool matters, though, so think about what size will be good for leaning against as well as sitting on.
  8. Have an eye mask handy. Supersensitive to light during a flare? When Basile experiences photosensitivity and pain during a flare, she slips on her eye mask. “It seems so melodramatic, but the light is horrifically painful when I’m in that sort of flare, so the mask is a must-have.” During past flares, when she didn’t have a mask, she used to bury her head under T-shirts to block out light or hide in the bathroom, where she could make it pitch-black. These days, she often uses the mask for just a bit, while she waits for the effect of pain medication to kick in.
  9. Use a walker if it helps — wheels recommended. The idea of walking can be intimidating during an ankylosing spondylitis flare, as can the risk of falling because of weakness, pain, and stiffness. At one point Di Pardo used a cane, but she now counts her walker with wheels and a seat as “a godsend.” Holding onto the walker, she feels safe moving around, even if she’s really tired. “I find it just provides a lot more stability [than a cane], and [because it’s a rolling type], all I need to do is push.” No excruciating lifting necessary. She can even sit on it when she needs a breather. Next step: destigmatizing walkers among younger people who feel ashamed to use them.
  10. Distract yourself. Whatever gets your mind off an ankylosing spondylitis flare — funny videos, feel-good movies, online games — is worth a try when pain ramps up and threatens to overwhelm you. “Distraction is a huge factor,” says Di Pardo. “If I’m in a lot of pain, I want to watch something that I find funny or entertaining just to get my mind off of that pain for a little bit.” She turns to the video-game streaming site Twitch to get her mind off things.
  11. Connect with the online community. Basile and Di Pardo both turn to social media sites for everything from comfort and validation to well-being and survival tips. “I would highly recommend turning to the community in times of distress,” says Basile, who uses forums on Facebook and websites such as Health Union. “People in those forums have helped me get through my flare-ups more than anything,” she says, adding that it’s important to remember that other people’s experiences don’t mirror yours exactly. “If someone is suffering,” Basile says, “it doesn’t necessarily indicate your entire life or future will be that way.” Since ankylosing spondylitis is often invisible to others, Basile says the validation she finds on these sites makes a big difference. “You may feel a level 9 pain,” she explains, “but you’re not limping, so people like your spouse or friends can be a little invalidating.”
  12. Reach out on Instagram. Di Pardo favors connecting through Instagram. She uses hashtags to find people — and to be found. “It’s a massive support system,” she explains. “I’ll help people out if they message me, and they’ll help me out.” With people on Instagram channels all over the world, time differences evaporate and connections can happen in the middle of the night, which is sometimes when they’re very much needed. Bekele says, “Keeping track of what your typical flare looks like, and being prepared for them,” is important for several reasons. If you start to see patterns and pick up on an impending flare at its early stages, for example, you can notify your doctor and perhaps adjust your treatment — and even implement some of these little measures that may help.