Imagine Dragons’ Dan Reynolds opens up about his health battle

Dan Reynolds endured chronic pain and stiffness for about five years before he was diagnosed with ankylosing spondylitis (AS) in his early 20s. It took another three years for the Imagine Dragons’ front man to publicly reveal that he’s living with this potentially debilitating form of arthritis, which typically affects the spine and large joints.

The Grammy Award-winning artist—known for physical and dynamic live performances—revealed his diagnosis in 2015 during a sold-out concert at Leeds Arena in the UK.

When asked why he finally decided to open up about his health—including struggles with depression, anxiety, and chronic pain—Reynolds concedes that over time he’s just become less concerned with how others view him. The musician and father was also motivated to shed light on this little-known disease, teach young people that life isn’t perfect, and connect with others who have chronic conditions.

“When I was first diagnosed, I didn't want to say, ‘Hey, I have a disease,’ for two reasons. You don't want to say, ‘Oh pity me.’ And I think, you don't want to seem broken. So, I just kept it to myself,” Reynolds tells Sharecare.

“As I got older, I cared less about that,” he adds. “The people that I really admired and looked up to are people who are human and speak about their human-ness. And I think that serves themselves and the world better.”

Searching for answers

Ankylosing spondylitis is the most common form of spondyloarthritis—a family of inflammatory rheumatic diseases that cause arthritis. But there is little awareness of this so-called “invisible disease.”

Early warning signs of AS—which often develop in young adults between 17 and 35 years old—include pain and stiffness in the lower back, buttocks and hips. This pain may get worse over time or flare up at night or after periods of rest or inactivity.

Like some other inflammatory conditions, AS often takes years to diagnose. Part of the problem is that back pain is common and could be attributed to something else, like an injury. Aside from the spine, the disease can affect the eyes, hips, shoulders, knees, ankles, toes, and fingers. AS could also trigger fatigue, loss of appetite, and even heart problems. These symptoms can present differently from one person to the next.

Some people with AS may bounce around between different specialists before they learn why they’re in constant pain.

Reynolds was no exception. “In high school I played volleyball. I would have issues in my Achilles [tendon] and it didn't make any sense. There was no injury or anything,” he recalls.

Later on, while Imagine Dragons was still searching for a record label, Reynolds’ pain became severe. “It reared its head primarily in my lower hips, or SI [sacroiliac] joints. I had a deep pain that felt like someone had a drill on my nerves. It was worse at night. I would not be able to sleep. There were nights when I was in so much pain that I was on the ground in tears, just writhing in pain.”

Reynolds adds that he’d also experience inexplicable pain in his neck and the arches of his feet. “I'd wake up in the morning and be so stiff, like stiff as a board,” he says. “I went to so many doctors.” Reynolds even remembers one show where his pain was so intense that he stood still on stage, unable to move.

Everything changed the day Reynolds met his rheumatologist. “For me, this was a game changer,” he explains. “I had been in such pain for so long with so many doctors not knowing what it was, that my first feeling was relief.”

Reynolds admits he was also scared about what this diagnosis would mean for his future and his band. He points out, however, that these fears were eventually replaced with hope once he realized that the condition—and his pain—could be controlled.

Living with AS

There is no cure for AS but it can be managed with physical therapy as well as nonsteroidal anti-inflammatory drugs (NSAIDs), biologics, or other disease-modifying antirheumatic drugs. These treatments focus on easing pain and stiffness and preventing complications associated with chronic inflammation of the spine, such as fusion of the vertebral bones.

What works for one person with AS may not work for someone else. So, treatment for the disease must be individualized. Overall, regular physical activity and maintaining good posture, flexibility, and range of motion are essential parts of therapy for those with the condition.

Finding relief

Working with his rheumatologist, Reynolds has identified what works for him. His treatment includes changes to his diet. Reynolds eats mostly vegetables and lean proteins, like chicken and salmon, while avoiding his triggers, such as sugar. He’s also adopted a strict workout regimen, which includes yoga and weight training.

Once he began his treatment, Reynolds saw immediate results, which motivated him to stick to a “clean” lifestyle that many would not associate with a rock star constantly on tour, performing before thousands of fans on any given night.

“You do find empowerment in the discipline, the stability, and the routine,” he says. “I'll have people ask me, ‘How do you get yourself to do it?’ and I'm like, ‘No, actually, it's really great because it makes me feel good.’ It gives me that extra bit of drive to go to yoga again and again because my health is so important to me.”

Looking back, Reynolds also realizes there were some early clues that should have been considered. It’s unclear what causes AS, but genetics likely play a role. The condition runs in Reynolds’ family. One of his brothers was told that he had AS a couple of years before Reynolds received his own diagnosis. He is one of nine children and three more of his brothers have since been diagnosed. (AS is much more common among men, but experts suspect it may present differently and actually be underdiagnosed in women.)

Scientists identified a gene mutation, called HLA-B27, that is associated with AS. Reynolds carries this genetic marker but not everyone with the gene has the disease.

Reynolds also has ulcerative colitis, a type of inflammatory bowel disease (IBD) that involves chronic inflammation of the digestive tract. It’s estimated that AS affects 2 to 3 percent of those with IBD.

Regaining control

These days Reynolds says he’s feeling great, “like Gumby.”

At 31, Reynolds achieved what rheumatologists call a state of “low disease activity,” which means his symptoms and inflammation were in check, reducing his risk for long-term complications and allowing him to function normally in his daily life. He’s not only able to perform, but he also surfs, snowboards, and plays with his children. He points out that when he does experience a flare up or occasional pain, he knows how to get back on track.

Reynolds notes that his now ex-wife and fellow musician, Aja Volkman, has been instrumental in getting him to the positive place where he is today. “She’s helped with our children, when I'm debilitated in bed. She’s woken up with me during the night when I'm just in excruciating pain and made me go to a doctor when I was stubborn and didn't want to go,” he says.

Being in control of his pain and following a regular exercise routine have also helped Reynolds improve his mental health and overall wellbeing. “Feeling empowered and feeling in control of your life, you know, absolutely helps with anxiety and depression,” he says.

Making a difference

Reynolds is on a mission to shed light on AS, educating others about the disease and helping those who’ve been diagnosed to feel less isolated.

Knowing firsthand how AS can affect people’s overall health and quality of life, Reynolds advises anyone with lingering and unexplained symptoms that are often associated with the disease to see a rheumatologist right away.

For those diagnosed with AS, his message is clear: be hopeful.

“As cliche as it sounds, I'd say there is hope,” Reynolds says. “There isn't a cure, but there are absolutely good, strong pathways for a fulfilled life. It just takes action. AS has pushed me to do things that I wouldn't have done that are good for me and good for my family. So, in that regard, I'm grateful for it.”