Ankylosing spondylitis (AS) often strikes young people when their adult lives are just beginning. Most are in school, building careers, or starting families. You’d think severe, ongoing pain would put an end to -- or at least dramatically change -- these life plans. Yet many people with AS are determined not to let their disease slow them down. They’ve found ways to manage their physical pain while living full, rewarding lives.
‘I don’t take anything for granted’
Jake Bumgarner racked up a lot of injuries as a high school and college athlete, including two neck fractures. So it made sense to blame his severe chronic pain on sports. Then, the summer before he started law school at Southern Methodist University in Dallas, he listened to a podcast about autoimmune disease.
“The symptoms were word for word what I’d always had,” he says.
Two weeks later, saw a rheumatologist and learned he had AS. It gave him peace of mind to finally know what was wrong, but he was still in a lot of pain. The flares were so bad, Jake landed in the hospital five or six times during his first semester in law school.
A podcaster had talked about how much they’d been helped by an all-meat diet (cutting back on starch could be helpful). Jake decided to give it a try.
“I went all out when I did the diet, nothing but meat and water. Within a week, I felt infinitely better,” he says. “My skin had been red with inflammation -- that went away. And I lost 40 pounds.
“Now, I can’t even imagine being in as much pain as I was before.”
Jake has tried to eat a more-varied diet (an all-meat diet isn’t doctor-recommended since you’re eliminating so many other healthy foods), but his disease usually flares when he does.
His symptoms can also flare after he sits in class all day. So he’s designed a daily workout routine.
Jake spends about 15 minutes up to his neck in a cold pool each morning. Then he stretches his psoas muscle. That’s a long muscle that runs from the low back through the pelvis to the upper thigh.
He says opening up his muscles makes him feel like he can breathe.
“For a while, I couldn’t get a breath in. I didn’t realize that until I got better and could take in more air,” he says.
Stretching the psoas can really hurt, even for people who don’t have AS.
“It’s pretty brutal,” Jake admits. “But the worse it is, the better I feel [afterward]."
Jake also does yoga and deep breathing.
“The day-to-day is difficult and painful. I can feel bitter. Every morning it’s back to square one,” he says.
But dealing with the hurt, and overcoming it, has left him almost thankful that he’s gone through it.
“I believe pain and suffering are the most vital aspects of growth,” he adds. “And I appreciate simple things, like being able to hang out with my family and not be in pain.
“I don’t take anything for granted.”
‘I have to keep going’
Jess E., who asked that her last name not be used, will soon be a grad student in Manitoba, Canada. She started having pain in her right buttock and hip during a summer road trip when she was 18. Jess chalked it up to long miles in a van. But the pain soon became so intense she couldn’t walk the icy paths on campus or even get out of bed.
It took 4 years for doctors to decide that Jess had AS. The condition is less common in women, so some are misdiagnosed or underdiagnosed. Jess says she was at a low point before the diagnosis, when all this pain was a mystery. But like many others with AS, Jess felt better when she had a name for what was hurting her.
“It made me know this wasn’t some punishment or curse from some force in the universe,” she says.
Today, she takes a drug that blocks an inflammatory protein called interleukin-17 (IL-17).
“It’s been amazing,” she says. “I only feel symptoms in the week leading up to my next injection.”
Jess has found that exercise is the best way to handle breakthrough (worse than normal) pain and life with AS in general.
“Exercise has been at the heart of this whole experience,” she says. “Since I lost 4 years of my young adult life due to pain and lack of movement, I promised myself after my diagnosis that I would never take for granted what mobility I had."
Jess joined an exercise program at a local hospital and worked with physical therapists until she was able to exercise on her own.
“I make sure to include core and lower-back-strengthening exercises every single day, even when I’m feeling symptoms,” she says. “Stretches and proper posture have also helped me with symptom management.
“My day can’t start if I don’t do a child’s pose [a type of yoga movement] to stretch out my back,” Jess says.
Jess is still afraid to do things that might throw her off-balance and cause injury, like walk on ice, inline skate, and ice skate. But she sees these as goals to work toward, not obstacles.
"I'm trying to understand my body and even nurture it, because for years it lived in unbearable pain and uncertainty,” she says. “Of course, it would be uneasy to ice skate again, but I know someday I will because I am working for it.”
She has a therapeutic massage every few months to help with pain and stiffness. She also tries to eat more anti-inflammatory foods (things like vegetables, seafood, and nuts).
In an effort to achieve maximum healthiness, Jess also avoids secondhand smoke (smoking is found to lead to more spinal problems for people with AS), and has stopped even light social drinking (alcohol can interact with some AS medications).
“I’ve just been volunteering as a designated driver, to the delight of my friends,” she says.
As for the future, no matter what it brings, Jess has a plan.
“I know eventually my spine may fuse or maybe my meds stop working, but I always ask myself, 'What else are you going to do?” Jess says. “I tell myself I have to keep going and literally keep moving forward every day."