Imagine Dragons' Dan Reynolds Breaks His Silence About Ankylosing Spondylitis

Grammy Award-winning singer, Dan Reynolds, uses his voice to bring attention to ankylosing spondylitis, a painful inflammatory disease that primarily affects the spine.

Dan ReynoldsGrammy Award-winning singer Dan Reynolds.
For years, Dan Reynolds, lead vocalist of the rock band Imagine Dragons, kept secret his struggle with ankylosing spondylitis (AS), a chronic, potentially disabling disease. When he finally decided to divulge his secret, Reynolds went for the big reveal, telling 13,000 fans attending the band’s sold-out concert at Leeds Arena (UK) about coming to terms with his disease.

"I've never said this publicly ever," he started, pausing for the rambunctious crowd to quiet down. "I have something called ankylosing spondylitis. It’s an autoimmune disease." As the audience cheered him on, he explained the disease in simple language: "Basically…your immune system thinks that your joints are a disease and so [it] attacks your joints and you get arthritis…and your joints can fuse together and it's a pretty scary thing." 

This disease can be really lonely. It's important to find a community where you can speak with people and learn that you can get to a point where the disease won't keep you from doing what you want to do."

—Dan Reynolds


His refusal to accept the reality of his disease had silenced him until the day of that concert back in November 2015, he explained, adding the reason for finally getting it out in the open. “Tonight I'm just going to share this because there's probably other people out there who suffer with it, too.”  

He’s continuing the openness that began that night in Leeds as host of a new interactive web series called This AS Life Live!, aimed at raising awareness about the little-known disease. For the program, Reynolds partnered with the Spondylitis Association of America and Novartis to showcase inspiring stories of people living and thriving with AS. 

Imagine Dragons' Lead Singer Dan Reynolds Performs Live in ConcertDan Reynolds performing live in concert.
Photo by Sven-Sebastian Sajak licensed under CC BY-SA 3.0

“There are thousands of people who have AS who are living the life they want to live,” says Reynolds, “They are surfers, yoga instructors, chefs, musicians, and I've been meeting with them for This AS Life Live! There are all these people who have found a place of health within the disease,” he adds. And proving that “life goes on.” (His first guest was chef Helgi Olafson.)

About AS

Ankylosing spondylitis is a progressive autoimmune disease that affect the spinal column, sacroiliac joints in the pelvis, hips, shoulders, and other joints. Stiffness is a hallmark symptom of AS. Early diagnosis and treatment is important to help slow disease progression, which may lead to irreversible autofusing of the spine’s vertebral bodies and joints.

Often, the first symptom of AS is sacroiliitis, or inflammation of one or both of the sacroiliac joints. This inflammation can cause diffuse back pain and/or buttock pain that radiates into the thigh. However, those with AS may have other manifestations including knee pain, dactylitis (a painful swelling of a finger or toe), plantar fasciitis, heel pain (especially in the morning), Achilles tendon pain, and uveitis (inflammation of the eye), says Seattle-based rheumatologist Erin Bauer, MD, FACR, who has not treated Dan Reynolds.

The precise cause of ankylosing spondylitis is unknown; genetic factors may play a part. About 90% of Americans with AS carry a genetic marker known as HLA-B27. Having the marker doesn’t mean development of AS is inevitable. And not having the marker isn’t a guarantee a person won’t develop AS. There’s also some indication that a bacterial infection or imbalance in the gut may trigger the autoimmune response of AS in those with a genetic predisposition.

Statistics on the number of Americans with AS range from 500,000 to 2.7 million. It’s most common in Caucasians and affects more males than females. And according to the Spondylitis Association of America, onset of the disease commonly occurs between the ages of 17 and 45.

Dan in Real Life

Looking back, Reynolds, now 29, believes that his AS symptoms started while he was in high school.  “I remember having a lot of pain in my knees that was kind of unexplainable because it wasn’t an injury of any sort,” he told Practical Pain Management. In his senior year, the knee pain morphed into ankle pain. “I didn’t have an injury then either,” he says. Reynolds saw a doctor who “gave me a steroid shot that kind of suppressed [the problem].”  After that, things were quiet for a couple of years.

And then, at 21, he was diagnosed with ulcerative colitis (UC), also an autoimmune disease that mainly affects the lower bowel. “So that should have been an indicator to me that I was prone to these autoimmune diseases,” he says.  

 A year or so later, in 2009, Imagine Dragons formed with Reynolds, then 22, as the lead singer. “Our show is very dynamic and active,” he says. And on stage Reynolds is “highly mobile.” Highly mobile until pain in his lower hips and upper buttocks practically froze him in place. At times the pain was excruciating, he says. “It felt like someone was drilling into my hips and lower back.” The pain kept him up at night. He couldn’t sleep. He couldn’t sit for long periods.

And he couldn’t perform “It got so bad that I couldn’t move,” he says. He remembers one show where he stood like a statue at the microphone for two hours “because I was in so much pain.” A couple of times, the pain forced the band to cancel a concert.

Looking in All the Wrong Places

For two years, he went from doctor to doctor. “I kept getting diagnosed with sciatica or arthritis or both or something else altogether,” he says. “I had MRI after MRI,” he recalls. No telltale sign of inflammation showed up. He tried anti-inflammatory drugs and steroids. None of the doctors he consulted brought up AS as a possible diagnosis.

The irony is that two of his brothers have AS. One was diagnosed two years before Dan’s diagnosis.  His brothers "told me I probably had it," says Reynolds who admits he resisted them and the disease. “It was just stubbornness on my part,” he says. “I was 23 years old and I didn’t want to admit that I had another disease,” he confesses. “I hadn’t even told anyone that I had ulcerative colitis because then people ask ‘what's that’ and then explaining it sounds awful,” he says.

Marriage and a Diagnosis

Despite the pain and problems, Reynolds met and fell in love with fellow singer and songwriter Aja Volkman. The couple married in March of 2011. A year later, they welcomed a daughter they named Arrow. Reynold’s joy was tempered by fear. He was in so much pain that at times he couldn’t even pick up his child. He worried he couldn’t be the hands-on dad he wanted to be. “It was a difficult time,” he says.

Finally, his brothers and reason prevailed. This time, Reynolds went to see a rheumatologist. After two years on a medical merry-go-round, the specialist diagnosed him with ankylosing spondylitis. Blood tests showed he carried HLA-B27, the genetic marker found in 90% of those diagnosed with AS.

Reynolds’ medical odyssey is not unusual says rheumatologist Dr. Bauer. “It’s very common that people have seen several doctors before seeing us,” she says. “One of the main reasons is that typically it’s younger people that get [AS] and there is a misconception among [some] physicians that young people shouldn’t have serious back problems so the cause of their pain or discomfort must be from a pulled muscle or something like that. Also AS is not that common. So while it’s well-known in the rheumatology world, it’s certainly not something that your average primary care doctor is seeing or thinking about every day.” Dr. Bauer estimates that 20% of her patients have AS.

Maintenance Takes Work

Reynolds and his rheumatologist came up with a treatment and maintenance program that would work for him. “Every case of AS is different,” says Reynolds. He follows a rigorous exercise program aimed at building muscle and getting his blood moving more efficiently through his hips. Whether he’s at home in Las Vegas or on tour, Reynolds goes to the gym twice a week for weight training and conditioning. Three times a week, he takes a hot yoga class. “Hot yoga works better for me…because it heats up my body and I feel like I can get a deeper stretch. I have to stretch and activate my joints. And I do a lot of focusing on my hips,” he says.  

His diet isn’t particularly restrictive. He eats in moderation. He doesn’t drink alcohol and has “pretty much eliminated sugar,” he says, though he allows himself a cheat day now and then.  

He’s taking a biologic medication to control the inflammation and pain.  “Biologics are what work for me,” he says. Since his diagnosis, he’s gone into remission a couple of times. In fact, he’s now in remission. But AS is unpredictable, he says. “Next year might be a bad year for me. I may have to go back on the biologics.” And he still has flares, episodes of pain “especially in my upper buttocks and hips. And sometimes I get inflammation in my big toe, ankle, or arch. Sometimes it’s in one foot, then the other.” 

Right now, Reynolds is in the “healthiest place he’s been in a long time,” he says. He been off medication for over a year and hasn’t had a major flare up in months.

Imagine Dragons is about to go on tour. The band is working on their third studio album and 4-year-old Arrow is about to become a big sister twice over. Reynold’s wife is pregnant with twin girls. The babies are due in April.

Dan Reynolds is feeling good. Still, he hasn’t forgotten what it feels like to be in chronic debilitating pain and to feel as if your life is spiraling down. “That is why I'm so passionate about being a voice for people with AS,” he says. “I have a platform that I can use to shed light on this still hidden disease.” he says. “There are so many people who have it and don't know they have it and haven’t seen a rheumatologist.”   

“This disease can be really lonely,” he says. “It’s important to find a community where you can speak with people and learn that you can get to a point where the disease won't keep you from doing what you want to do.”  That’s the message of This AS Life Live! And that’s Dan Reynolds’ message, too. “I have a responsibility to speak up for people with AS.”

 

Updated on: 10/17/17
Continue Reading:
Low Back Pain Overview
SHOW MAIN MENU
SHOW SUB MENU