February 25, 2024
February of 2024 marks eight years since I was diagnosed with Ankylosing Spondylitis. Eight years of ups and downs, seven different rheumatologists, a couple new diagnoses, and the addition of several new healthcare providers to my care team. This year, I added a Physical Therapist to the mix after many years of willfully disregarding recommendations and referrals to PT. I’m glad I did!
You may be asking why now? what changed? My annual spinal x-ray does not show evidence of spinal fusion. But I’ve learned throughout this journey that no x-ray, CT scan, or MRI will ever show the whole story. Year after year, I collect more symptoms and my pain seems to only spread and increase. I am losing flexibility and range of motion in my spine, yes, but I’ve heard this before.
Let’s face it, my AS is not getting any better. If I want to combat this progressive disease, I need to be proactive.
What pushed me to schedule that first PT appointment was not remarkable in and of itself. Instead, I finally admitted to myself that this systemic disease needs more of my attention, not just my attention to the pain but intentional efforts to take back some of what I’m losing with this disease.
My First Month at PT
I received my initial evaluation during my first visit with the Physical Therapist. During this visit, I was given the space to voice what I’d like to accomplish through therapy. My main goals: increase flexibility and mobility, decrease pain. To establish a baseline, my Physical Therapist measured my range of motion–from the flexibility of my spine when bending forward and leaning back, to the mobility in my ribs, to the stiffness and pain I feel when pressure is placed on each segment of my spine.
At my PT’s recommendation, I began attending sessions twice a week for four weeks. My hamstrings were rigid like timber, which only adds to AS-related back pain, so the PT team recommended workouts and stretches aimed at loosening those up. My chest wall is sore to the touch on a good day, choked by pain on others, so they guided me through exercises to stretch my chest while also promoting spinal mobility.
During the course of a month, my PT team introduced me to two dozen new exercises that focused on promoting flexibility. The name of the game is not to increase muscle mass or cardo endurance, but to address pain and stiffness through movement. When done right, this type of strategic movement can be beneficial for any spondie’s treatment plan.
Pace Yourself and Listen to Your Body
But there’s a note caution here–something I learned the hard way. Only you know what your body can handle. After my third PT session, my body started to feel worse. Exercises that were supposed to get easier with repetition were causing increased pain. My hips were ceasing up, especially after sitting in my office chair for an hour.
Success at Physical Therapy, my therapist said, means finding three exercises out of three dozen that work for you. To reduce pain, I simply had to listen to my body and be selective with the exercises. Instead, I was treating my exercise plan like a prescription for antibiotics–take the entire course as directed, don’t stop early, and if you miss a dose, resume as soon as possible.
Find Exercises that Work for You
As it turns out, Physical Therapy is a negotiation between your goals and what your body can handle. My goals were to increase mobility and decrease pain. But one cannot come at the expense of the other. Turns out that missing a dose here and there is just what my body needs.
I’ve learned that it’s okay to say no to a proposed exercise, especially if it causes more pain. In fact, it’s better to say no to certain exercises than to say no to exercises all together!
At the end of month one, I settled on six exercises that get my spine and rib cage moving but do not increase pain or inflammation in my body. Three such exercises include:
The Open Book Stretch - my body with AS wants to curl inward, as if marionette strings are constantly pulling my shoulders forward. This stretch helps check some of my costochondritis pain by opening my chest and stretching my thoracic spine.
Clamshell Exercise - I suffer hip involvement with my AS. This exercise moves the joints in my pelvis and spine while working the glutes and abs.
Lumbar Rotation - it’s typical for AS to begin in the lumbar spine. I lived with lower back pain and stiffness for over a decade before my diagnosis. This gentle exercise forces me to rotate the area of my spine that I protect most.
I see my PT for my one month re-evaluation in a few days. I don’t expect my body to make great strides in terms when it comes to increased mobility. Yes, my therapy plan is progressing slower than my PT initially expected, but my AS body operates by its own set of rules!
My next challenging–establishing a long-term exercise routine. Let’s face it, my AS is not getting any better. If I want to combat this progressive disease, I need to be proactive.
-Jessica