Background/Purpose: Like many suffering from autoimmune diseases, my diagnosis was not straightforward and took nearly 13 years to get answers. I first started experiencing an array of symptoms when I was 15 years old, which led to a subsequent diagnosis of POTS. These symptoms were not constant and I experienced times where I was essentially symptom free. In 2019, I began to experience severe pain and fatigue, which continued to worsen over the coming year. During this time, I saw multiple specialists, which culminated in the third neurologist I had seen identifying a suspicion of Sjögren’s, and, subsequently, a confirmed diagnosis.  

Intervention: The biggest issue I had was finding informed help on creating an exercise routine to help me regain strength. I had deconditioned rapidly in 2019 even though I was physically active. While every physician I saw advocated for exercise, none could teach exercise techniques that worked with my severe symptoms. After a prolonged search for a provider to fit my needs, I was fortunate to find a physical therapy practice with the expertise and ability to work with me to build an individualized program around my limitations. My initial routine consisted of in-office visits once per month focusing on myokinesthetic massage and instruction for supine-based strength training. At home training took place daily, but with limited duration and intensity.

Maintenance: I am now 4 years into my routine and it has continued to evolve with my abilities. I now see my physical therapist in person every 2-3 months and exercise on my own using a 3-day split comprised of aerobic and anaerobic exercise. A typical session will take between 45 and 60 minutes, with breaks, as necessary. As time has gone on I’ve been able to gain strength and increase the volume and intensity of my workouts, though pain and fatigue remain prominent factors in what I’m able to do and how I feel.

I need to be conscientious not to overwork myself, as that can result in setbacks and a prolonged need for recovery. Time of day is also a factor, as I need to exercise late enough in the day that my sensation of pain, which I wake up with every day, improves but not so late that my ability to sleep is impacted. For me, this is between 3PM and 5PM.

My consistency, the evolution in my program, and my ability to listen to my body are signs of progress. However, my disease is unpredictable, so it remains a challenge to know whether a workout will have a significant and negative impact on me. In this regard, I am still searching for an optimal balance in my program.

Quality of Life: While I have made progress through implementing the aforementioned exercise and physical therapy routine, I remain frustrated on a daily basis in trying to manage pain and fatigue, the unpredictability of which keeps me housebound on most days. Conversely, I recognize the positives. I have been able to significantly reduce the number of medications that I take, my heart rate is consistently more stable, and I can occasionally participate in outdoor sports.

So, while I’m still searching for solutions to these systemic issues, I’m hopeful for continued progress both in my own situation as well as how the medical and scientific communities understand, manage, and treat this disease.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/finding-the-balance-regaining-my-strength-while-living-with-sjogrens-pots/