I’ve had ankylosing spondylitis (AS) for nearly a decade. I’ve experienced symptoms like chronic back pain, limited mobility, extreme fatigue, gastrointestinal (GI) issues, eye inflammation, and joint pain. I didn’t receive an official diagnosis until after a few years of living with these uncomfortable symptoms.
AS is an unpredictable condition. I never know how I’m going to feel from one day to the next. This uncertainty can be distressing, but over the years, I’ve learned ways to help manage my symptoms.
It’s important to know that what works for one person may not work for another. That goes for everything — from medications to alternative therapies.
AS affects everyone differently. Variables like your fitness level, place of living, diet, and stress levels all factor into how AS impacts your body.
Don’t worry if the drug that works for your friend with AS doesn’t help with your symptoms. It could just be that you require a different medication. You may need to do some trial and error to figure out your perfect treatment plan.
For me, what works best is getting a good night’s sleep, eating clean, working out, and keeping my stress levels in check. And, the following eight tools and devices also help make a world of difference.
From gels to patches, I can’t stop raving about this stuff.
Over the years, there have been many sleepless nights. I get a lot of pain in my lower back, hips, and neck. Applying an over-the-counter (OTC) pain reliever like Biofreeze helps me fall asleep by distracting me from the radiating pain and stiffness.
Also, since I live in NYC, I’m always on a bus or subway. I bring a small tube of Tiger Balm or a few lidocaine strips with me whenever I travel. It helps me feel more at ease during my commute to know I have something with me in case of a flare-up.
There’s nothing like being in the middle of a stiff, painful AS flare-up while on a crowded bus or plane ride. As a preventive measure, I always put on some lidocaine strips before traveling.
Another favorite travel hack of mine is to bring a U-shaped travel pillow with me on long trips. I’ve found that a good travel pillow will cradle your neck comfortably and help you fall asleep.
When you feel stiff, picking things up off the floor can be tricky. Either your knees are locked, or you can’t bend your back to grab what you need. I rarely need to use a grip stick, but it can come in handy when I need to get something off the floor.
Keeping a grip stick around can help you get the things that are just out of arm’s reach. That way, you won’t even have to stand up from your chair!
I have a bag of lavender Epsom salt at home at all times. Soaking in an Epsom salt bath for 10 to 12 minutes can potentially offer many feel-good benefits. For instance, it can reduce inflammation and relieve muscle aches and tension.
I like to use lavender salt because the floral fragrance creates a spa-like atmosphere. It’s soothing and tranquil.
Keep in mind that everyone is different, and you may not experience the same benefits.
When I had an office job, I requested a standing desk. I told my manager about my AS and explained why I needed to have an adjustable desk. If I sit all day long, I’ll feel stiff.
Sitting can be the enemy for people with AS. Having a standing desk offers me much more mobility and flexibility. I can keep my neck up straight instead of in a locked, downward position. Being able to either sit or stand at my desk allowed me to enjoy many pain-free days while at that job.
Heat helps to relieve the radiating pain and stiffness of AS. An electric blanket is a great tool because it covers your whole body and is very soothing.
Also, placing a hot water bottle against your lower back can do wonders for any localized pain or stiffness. Sometimes I bring a hot water bottle with me on trips, in addition to my travel pillow.
During my early AS days, I developed chronic anterior uveitis (inflammation of the uvea). This is a common complication of AS. It causes horrific pain, redness, swelling, light sensitivity, and floaters in your vision. It can also impair your vision. If you don’t seek treatment quickly, it can have long-term effects on your ability to see.
Light sensitivity was by far the worst part of uveitis for me. I started to wear tinted glasses that are specifically made for people with light sensitivity. Also, a visor can help protect you from the sun’s light when you’re outdoors.
Listening to a podcast or audiobook is a great way to learn about self-care. It can also be a good distraction. When I’m really exhausted, I like to put on a podcast and do some light, gentle stretches.
Just the simple act of listening can really help me de-stress (your stress levels can have a real impact on AS symptoms). There are many podcasts about AS for people who want to learn more about the disease. Just type “ankylosing spondylitis” into your podcast app’s search bar and tune in!
There are many helpful tools and devices available for people with AS. Since the condition affects everyone differently, it’s important to find what works for you.
The Spondylitis Association of America (SAA) is a great resource for anyone looking to find more information about the disease or where to find support.
No matter what your AS story is, you deserve a joyful, pain-free life. Having a few helpful devices around can make everyday tasks much easier to carry out. For me, the above tools make all the difference in how I’m feeling and really help me manage my condition.
Lisa Marie Basile is a poet, the author of “Light Magic for Dark Times,” and the founding editor of Luna Luna Magazine. She writes about wellness, trauma recovery, grief, chronic illness, and intentional living. Her work can be found in The New York Times and Sabat Magazine, as well as on Narratively, Healthline, and more. Find her on lisamariebasile.com, as well as Instagram and Twitter.