Flares are often unpredictable, and can be caused by random fluctuations in the level of disease activity, according to Kathryn Dao, MD, an associate professor of rheumatology at UT Southwestern Medical Center in Dallas. Doctors aren’t sure exactly what leads to AS flares but suspect that things like stress, infections, and generally “overdoing it” (working long hours and not getting enough sleep, for example) could be contributing factors. Pain, disruption of your daily life, and unpredictability of symptoms can all add up to a challenging mix when you’re living with AS. What’s more, flares can increase emotional upset, according to the SAA. That said, as much as flares can temporarily slow you down, you can find ways to take control and get through tough days. Here are some tips from experts and real people living with AS that may come in handy the next time you experience a flare.
How to Tame the Effect of Flares
While you cannot control when you have flares, you can take measures to reduce their effects if they happen. There are many benefits to being proactive, says Joerg Ermann, MD, a rheumatologist at Brigham and Women’s Hospital in Boston. “Generally with chronic diseases, it’s better to take charge — to not consider that the disease owns you, but that you know how to deal with it,” he says. “That means learning about the disease and the medications that are available, exercising, and making adjustments to eat a healthy diet. Ultimately, it’ll help you have a better quality of life.” Some things you can do to face flares head-on:
1. Remember that it may not be a flare.
“It is important to distinguish if a flare is actually a flare of ankylosing spondylitis or a manifestation of something else, such as kidney stones, fibromyalgia, infection, or doing an activity that aggravates your back and joints,” says Dr. Dao. “AS flares can happen as a result of random fluctuation over time, or they could be triggered by an infection such as a cold or emotional upset,” says Dr. Ermann. If your flare persists over a longer period or things get continually worse, talk to your rheumatologist, he suggests, because it could mean “that your medication doesn’t work anymore or you need to adjust your dose.”
2. Prepare for future flares.
At your next regular, non-flare-related checkup, ask your doctor about treatment options to address pain or other symptoms that may strike on a bad day, suggests Dao. “Being prepared and talking about this ahead of time will relieve some of the anxiety of not being able to reach the doctor immediately during a flare, when you’re anxious and in pain.” For example, your doctor may prescribe nonsteroidal anti-inflammatory drugs (NSAIDS) or muscle relaxants and topical pain creams to use as needed, says Dao.
3. Adjust your activity and expectations.
“Flares can be all over the board,” says Liz Maines, PhD, a clinical psychologist in Ruidoso, New Mexico, who also has AS. She recalls that when she first experienced a flare, it was so severe that she couldn’t pull the covers off to get out of bed. “When a flare is severe, it may not be possible to get up or move around much,” she notes. “Be kind to yourself and give yourself some flexibility.”
4. Keep a journal.
Taking notes about your flares can be helpful, says Dao, who suggests keeping track of:
What precipitates or triggers the flare — weather changes, stress, not exercising, missing medications, sleeping poorly, eating more sugar, drinking alcoholWhat makes flares better — heat, ice, stretching, medsHow often flares are occurring and how long they last
“Documenting these flares regularly will show if a pattern is emerging, which allows you to take ownership of the disease instead of letting the disease take ownership of you,” says Dao.
5. Reduce stress.
It’s advice you hear often, and it’s good for everyone’s overall health. But for people who have AS, reducing stress may be an important component of pain management, according to the SAA. Lowering stress can be especially important when you’re having a flare, says Dr. Maines. Stress and anxiety can worsen symptoms — particularly pain. Dao suggests trying mindfulness, meditation, and breathing exercises to slow your heart rate and reduce anxiety. Other measures you can try include tai chi, yoga, massage, or taking a walk in nature if you feel up to it. Try to find a meditation video that features images of tranquil outdoor scenes, such as waterfalls, so that you can still enjoy nature when you need to rest at home, suggests Maines.
6. Try heat or cold.
When pain strikes, a hot shower or cold compress may bring relief, says Dao. “It might be helpful to use ice packs for acute flares; for chronic pain, heat may work better.” Cold therapy can help numb pain and reduce swelling. Heat therapy can help loosen stiff joints and muscles and promote circulation. For heat therapy: Soak in a warm bath for 20 minutes to help ease pain and stiffness. You can also apply moist heat to painful joints multiple times a day to help find relief. For cold therapy: Cover the area with a towel rather than using ice packs against bare skin. Apply as needed for up to 20 minutes at a time.
7. Stay active.
“People who are in chronic pain are at risk for depression; conversely, people who are depressed can experience increased pain,” says Dao. “Overwhelmingly, studies show exercise helps improve both pain and depression.” That said, Maines notes, if exercise is not an option for you during a painful flare, think in terms of movement, rather than working out. “Try stretching, gentle yoga, tai chi, or chair yoga,” she suggests. “Regular, frequent stretching is important so the back does not lock up,” says Dao.
8. Prioritize good sleep.
Getting quality sleep is one of the most important things you can do when you have a condition such as AS, says Maines. “Pain and discomfort can make it difficult to get rest but it’s important to find ways to get good sleep,” she says. Talk to your doctor about ways you can relieve pain to get the rest you need. “Our bodies heal during sleep,” notes Maines.
9. Accept help from assistive devices and gadgets.
AS often occurs in people ages of 17 to 45, according to the SAA. Many may not feel ready to turn to a cane or walker, says Maines. “Someone may think, This means that I’m disabled now, so if I pretend I don’t need it, I’ll be okay.” But these practical tools can help you heal and get through your flare, she notes. “They are there for a reason,” says Maines. “Like a hammer or a screw, you can use the tool when you need it and then put it away when you don’t.”
10. Build your support network.
Maines advises connecting with others who understand what living with As is like, are willing to listen, and can offer support. “One of the main complaints about this disease is that it’s often invisible,” she says. “We are young, and symptoms can be gone one day and there the next, and people may ask, ‘What happened? What did you do to yourself?’” She also suggests joining a support group, such as those offered through the SAA. They can provide educational resources as well as opportunities to form connections with others and gain critical emotional support. “Talk to others who have the disease and find out how they manage flares,” says Dao. “And don’t forget, your doctor is your best resource. Addressing the flares can improve your quality of life and may slow disease damage.”
11. Consider your mental health.
Living with a painful chronic condition can be difficult to deal with and increase your risk of depression, according to the National Institute of Mental Health (NIMH). You may feel sadness and grief after a diagnosis or overwhelmed by having to manage a lifelong condition. You may have to come to terms with the loss of what was. You may feel angry or upset about having to adapt and face limitations or deal with the reality that your favorite activities may not be as easy as they used to be — or even possible at all. According to the NIMH, an important part of managing a chronic illness is caring for your mental health as well as physical. Research has shown that treating both your condition and depression can help improve management of both health issues. Finding a mental-healthcare professional who is experienced in treating people with chronic illnesses, such as AS, is key. “It’s important to talk about the grief you may feel and become okay with the new normal,” says Maines.
12. Gain perspective.
Empower yourself and try to keep a positive outlook, says Dao. “Empowerment will allow you to not feel helpless,” she says. “Tell yourself, ‘Flares are temporary. Today may not be a good day, but tomorrow will be better.’” Ermann suggests looking back while also looking ahead. “We cannot cure the disease at this point in time, but we have ways now to improve life,” he says. “The long-term outcomes now are better than they were 20 or 30 years ago.”
