• In a recent survey of MySpondylitisTeam members, many reported feeling unwell, living with pain, and coping with severe fatigue while living with ankylosing spondylitis (AS).
• Those who experience almost constant symptom flares reported worse quality of life than people whose flares come and go.
• Members say it helps to stay as active as possible, respect your limits, and find a rheumatologist who understands your experience.

Living with ankylosing spondylitis means that symptoms of pain, stiffness, swelling, and fatigue get worse during flares, which are followed by periods of remission. To better understand how flares may be experienced and affect quality of life, we surveyed 253 MySpondylitisTeam members who report having ankylosing spondylitis.

When members tell us about their experiences, we believe it’s important to share what they say not only with other members of MySpondylitisTeam but also with rheumatologists and health care professionals who study spondylitis. These survey results were shared at the American College of Rheumatology’s ACR Convergence 2023, an annual professional medical and academic conference.

Here’s what MySpondylitisTeam members told us about living with ankylosing spondylitis, the more severe or advanced form of axial spondyloarthritis.

Living With Flares

Flares, also known as flare-ups or exacerbations, are periods of disease activity with more (or more severe) AS symptoms. Flares can be followed by periods when symptoms get better or go away, known as remissions.

In the survey, we asked respondents to select the pattern of flares that most accurately reflects their experience. Most respondents are split between having periods of increased symptoms on and off (44 percent) and having flares almost all the time (43 percent).

Impact of Flares on Daily Life

Respondents whose AS flares cause nearly constant chronic pain tended to be less positive about their quality of life compared with those whose flares come and go. Members reported these aspects of daily life were most affected by AS flares:

• Negative effects on relationships with family
• Feelings of being isolated or alone
• Interference with ability to have an active social life
• Feelings of stress, anxiety, or depression
• Reduced productivity at work, school, or home

In the words of one respondent, “You can’t do the things you really love to do. I have been left out of many things due to lower back pain, and there’s nothing to be done about it. I feel left out and have for years.”

Another described the toll flares have taken on their mental health: “The pain and stiffness have made my depression and anxiety go through the roof.”

Many members living with AS also indicated that obstacles to managing their condition include worsening pain or feeling unwell and relentless fatigue. Additional obstacles include depression or anxiety and lack of motivation to exercise or stretch.

When asked to describe their symptoms, many respondents comment on pain or fatigue, both of which can be debilitating. Members described how symptom flares make it more difficult to manage their AS:

• “Constant pain makes nothing else matter.”
• “It’s a nightmare! I’m fighting against my own body every day, trying to do what I did before the disease made everything painful.”
• “It’s completely changed my ability to be involved in all the activities I was in before, making me feel isolated and useless. I push myself to do what is necessary, but extreme fatigue and pain are limiting what I do.”
• “It impacts everything I do, and not knowing how I will feel any given day makes it hard to plan for anything.”

The extensive impact that disease flares have on quality of life suggests that managing AS symptoms remains an ongoing concern. Frequent or near-constant flares, combined with the perception that symptoms of fatigue and pain are obstacles to managing AS, demonstrate that people living with ankylosing spondylitis are looking for better solutions to manage the disease.

Tips on Managing Ankylosing Spondylitis Flares

In the survey, MySpondylitisTeam asked members what tips or advice they have for others living with AS. Members had a number of suggestions about how to improve well-being, including getting gentle exercise and finding a doctor who stays engaged with your needs and gives medical advice you can understand. Here are some of their responses:

• “Stay active as long as you can.”
• “Find a doctor who cares.”
• “Hot showers, and stretch as much as you are able.”
• “Daily exercise is a must. Find the right diet and stick to it (within reason), and find a rheumatologist who listens, explains, and understands.”
• “Make sure your doctors understand the pain you are in.”
• “You have to learn that you can only do so much and have to take things easier no matter how hard that is to do.”

Research shows that people with chronic diseases have an easier time sticking to their treatment plan when their doctors listen to their concerns. At the same time, it’s important to share with your doctor all your symptoms, any difficulties you have taking your meds, and questions you have about your current treatment options.

Ankylosing spondylitis is a chronic disease, and it can take time to find an effective treatment plan. Members are quick to encourage each other through the ups and downs of living with spondylitis. One respondent took the time to write in their response to a survey question, “Don’t let this disease hold you back 100 percent of the time! It’s not easy, but it’s worth it to go and do.”

Talk to People Who Understand

On MySpondylitisTeam, more than 96,000 members come together in a support group atmosphere to ask questions, give advice, and share their stories with others who understand life with ankylosing spondylitis.

How often do you experience symptom flares while living with ankylosing spondylitis? How do flares affect your life and daily activities? Comment below, or start a new conversation on your Activities page.