“When patients are diagnosed with ankylosing spondylitis, it is a lifelong diagnosis,” says Eliana Cardozo, DO, assistant professor of Rehabilitation Medicine at Icahn School of Medicine at Mount Sinai. “Many of my patients are very concerned that they won’t be able to do the things they enjoy, whether that be going for a run or golfing or playing tennis.”
Because ankylosing spondylitis affects the spine—particularly the sacroiliac joint, which connects the spine to the pelvic bone—it can cause pain and stiffness in the lower back. Stiffness in the spine can really make just about any physical hobby more challenging, especially without treatment.
That doesn’t mean that getting diagnosed with ankylosing spondylitis means you have to stop playing soccer in the yard with your nephews. “Activity modifications are really going to depend on the patient themselves and how much the disorder is affecting them,” says Dr. Cardozo.
How much you’ll need to modify your activity comes down to how successful your lifestyle changes and medications are at treating the disease. For the most effective treatment that allows you to stick to your hobbies, here’s what Dr. Cardozo recommends:
1. Do not smoke.
“Smoking has been shown to increase pain and limit function in people [who] have ankylosing spondylitis,” says Dr. Cardozo. This may occur for a number of reasons, including reducing the effectiveness of the medications and increasing inflammation in the body.
2. Stay active.
If you want to be able to stay active with ankylosing spondylitis, you need to, well, stay active. “We know that in ankylosing spondylitis, inactivity actually worsens pain, so the more patients can keep moving, the better they’re going to feel,” says Dr. Cardozo. Learn more about the benefits of exercise for ankylosing spondylitis here.
If your pain and stiffness is so severe that you are having trouble doing any physical activity, talk to your doctor. They may be able to refer you to a physical therapist who can help you begin an exercise regimen that works for you. Find out what to expect at your first physical therapy appointment here.
3. Stick to your medications.
Your medications can only be effective if you take them consistently, as prescribed by your doctor. Sticking with your prescribed medications can manage inflammation in the spine, thus reducing pain and stiffness to help you continue all or most of your favorite hobbies.
If your medication is causing side effects that you really can’t tolerate, do *not* alter your dose or just stop taking it. This can be unsafe or could make your condition worse. “I caution patients to really talk it through with their treating physician so they can come up with either alternatives or different plans,” says Dr. Cardozo.
4. Be mindful of your posture.
One of the risks of ankylosing spondylitis, especially if it goes untreated, is that the vertebrae may begin to fuse together, forming an immobile spine. In some cases, the spine may fuse in an unnatural position, causing you to feel permanently slumped or crooked. This can obviously have a very negative effect on your ability to stick with hobbies, or even complete everyday tasks.
Practice good posture during your everyday activities, such as when sitting in front of a computer. Strengthening the muscles in your upper back, spine, and core can help support good posture.
5. Alert your doctor of any problems.
“If you feel a flare in your pain, or you feel like something’s not working, be vocal about it with your physician because there may be other options that you don’t know about yet,” says Dr. Cardozo.
Your provider doesn’t want to settle for “good enough” any more than you do. If something’s not right for you, you and your provider may be able to work together to optimize your treatment so you can truly feel better.
“Many [patients] that have ankylosing spondylitis go on to live full and fulfilling lives doing many of the activities that they enjoy,” says Dr. Cardozo. “Some may have to modify their activities over time, but overall people can stay active, and one of the goals of treatment is to keep you as active as possible.”