Self-Care for Ankylosing Spondylitis: You Matter
If you have ankylosing spondylitis (AS), care may be managed by your interdisciplinary team: rheumatologist, general practitioner, physical therapist, nutritionist or dietitian, cardiologist, gastroenterologist, ophthalmologist, and mental health professional. Your own care of you is vital, says Gert Bronfort, Ph.D., doctor of chiropractic, a research professor at the Integrative Health & Wellbeing Research Program and Earl E. Bakken Center for Spirituality & Healing at the University of Minnesota. Here are Dr. Bronfort’s tips for self-care.
Counteract forward flexion
With this condition, a type of arthritis that damages your spine, it's very important to try to remain as flexible as possible, avoiding sitting too long or bending forward. "The natural progression of the disease may lead to forward flexion, or bending deformation of the spine including the cervical spine, so the idea is to counteract that bending," Dr. Bronfort says. "Exercise may help you stay active, with the least dependence on medication."
You already have your medication regimen to treat flare-ups. But you can also use heat or ice to temporarily ease discomfort, Dr. Bronfort says. "Maybe you're having pain. Use ice if the flare-up is inflammatory, because using heat will worsen the situation and lead to further inflammation. Ice or cold slows blood flow and helps limit swelling. Use heat to help relax stiff joints and fatigued muscles. This will also help with stretching and strengthening exercises."
Choose non-weight-bearing exercises
Daily exercise is a friend, especially aerobics for good lung function, says Dr. Bronfort. "If you're used to running, great, but it could aggravate your condition. I usually recommend non-weight-bearing types such as biking or elliptical trainers — they put less pressure on spine and joints, as does water exercise. My best advice is to find exercise you like and stick with it, staying active to counteract the tendency for this condition to worsen. It does depend on how much you can tolerate."
Assess your fitness
Knowing what you can do is important, Dr. Bronfort says, so working with a healthcare provider with experience in treating spine-related conditions from a conservative standpoint makes a big difference. A physical therapist or chiropractor can help you determine what's best, and then you can fine-tune your routine and keep motivation strong with a trainer or coach. Be sure to ask about the best deep breathing exercises for your lung conditioning, and stick with them.
Mind your mindfulness
Mindfulness can help you control pain and discomfort, says Dr. Bronfort, and it's worth developing some skills in this area. "You can find excellent mindfulness apps online, or you can find a practitioner to help guide you to appropriate resources," he says. "You can approach this in a secular and more practical way, without any association to religion, on your journey to self-reliance. Start by focusing on deep breathing and accepting and honoring your situation instead of fighting it."
Determine what self-care means to you
Meet our inspiring patient expert Charis Hill, who reminds us that everyone experiences AS differently. "For me, self-care means taking advantage of anything that will help conserve my energy, reduce fatigue, and prevent additional pain. For others, this also depends on the severity of the disease, how long it's been part of someone's life, and the health of the person outside their AS. The biggest lesson I've learned with self-care is how much more I can do by doing less."
Think before you do
Charis has learned to economize with her AS, and she's talking about her health here. "What I mean by doing less is that is I finally realized I can sit when I don't have to stand. I've been known to sit on the floor while waiting in line at the post office. That means, I can use the energy I saved there on something else. It means I can do more in the day or week that I otherwise would miss if I decided to stand those 15 excruciating minutes in line."
Prioritize your priorities
Charis knows how to think outside the box and be oh-so resourceful. "This is why I use a wheelchair when I attend events that require a lot of standing, or a disability placard when I go to the store," she says. "A lot of items that healthy people see as a convenience I see as necessary tools to preserve my quality of life."
It's about you
You play a big part in your care. You know about managing pain, about exercise, mindfulness, and making life easier. Try to maintain a healthy diet, Dr. Bronfort says, not only for whole-body health, but to prevent excess weight gain, no friend to anyone with AS. Managing self-care means putting yourself and your health first, and not feeling guilty about it. Tune into any feelings of depression or anxiety, and don't hesitate to get professional help when you need it, or join a support group.