In her powerlifting class in high school, while squatting 450 pounds, having anything wrong with her spine was the furthest from Ashley Romereim's thoughts. Afterall, she was hoisting the weight of three adults confidently over her head. Ashley, diagnosed with ankylosing spondylitis (AS) at age 16, was an athlete in the strength sport that includes the squat, the bench, and the deadlift categories. Now 30, she has found relief from some of the pain that comes with AS from a spinal stimulation device. Ashley talked with HealthCentral by telephone about what it was like to learn she has AS and how she lives a full life right now.
HealthCentral (HC): How did you begin your AS journey?
Ashley: It began in 2004, when my first clue was pain in my back that didn't go away. I thought I'd pulled a muscle. But my dad and grandfather had AS, and so when I went to my primary care doctor, there was shadowing on the X-ray of my spine, and especially on the sacroiliac (SI) joint. This is common with AS, often as a first symptom.
I was really active and this news was so frustrating. I had to quit softball — I was a catcher — and I couldn't lift anymore. I also had to quit marching band, where I played trumpet, which broke my heart. Music was my life and I was an opera singer who performed at Carnegie Hall with the Master Arts Chorale and at the Kennedy Center in Washington, D.C.
HC: You've talked about dealing with the pain and how exhausting that was. What did you do recently about that?
Ashley: On December 6 last year, I had a spinal stimulator surgically implanted. It's essentially an internal version of a TENS unit — which stands for transcutaneous electrical nerve stimulation. I have a battery pack implanted on the back of my left hip, right above my gluteal region. Two leads are attached on either side, and they go between my thoracic and lumbar vertebrae. The device transmits low-voltage electrical impulses, via electrodes, to the body part that's in pain.
This works really well for my lower back. The electrical stimulation relieves a lot of the pain, and I've been able to cut my dosage of oral pain medications in half. This is a big step for me, since I've been taking pain meds regularly since I was 18.
HC: What else did you use in the past for your pain?
Ashley: I know they work really well for lots of people, but I don't react well to biologics. I did take Humira, a TNF blocker (tumor necrosis factor blocker), and I think I tried every TNF blocker, some for a few years, some for a short time. I also tried a biosimilar to the biologic drug Remicaid, called Inflectra, but I had a side effect of heart problems, with my heart skipping beats, along with tachycardia or really fast beats. I was tired of being in pain and tired of not working. I don't want to have to rely on my parents for help. Thanks to my device, now I have a receptionist's job at a doctor's office.
HC: Tell us about your day-to-day health maintenance.
Ashley: I have to "recharge myself" daily, because the unit contains a battery. I use a portable charger. Oh, and I haven't had any issues with going through metal detectors! About those pain meds that I still take: I use the antidepressant Cymbalta, which in addition to helping my mood, is actually approved for the kind of pain I have. I also use muscle relaxers when I need to.
I confess I'm eating kind of terribly right now. But I try to do cardio and weights three-to-four times a week — I love the gym and also yoga. Oh, and I'm also hypermobile, which means my joints are much more flexible than normal and so I haven't had much fusion, which is both a blessing and a curse. For me, it means my knees pop out of my joints when I'm trying to take a class!
HC: What else is relevant in your life right now and what "completes" you?
Ashley: I think it's so important not to view AS as "the end of the world.” Yes, it's disheartening to have this condition, but there's also a lot to learn, so do your research and find good doctors. Find a community of other people with AS. Being a part of that helps my depression immensely, for having people who understand what's going on has helped me more than anything — which brings me to therapy. It can be a godsend, especially when you are grieving the loss of life as you knew it. You learn to come into a new life, knowing you're never going to be the same person, but this is your new normal. There are still so many things you can do.