Background/Purpose: I was diagnosed with Sjögren’s disease in 2015. I sought help from a rheumatologist after experiencing hand pain. I also had dry eyes and dry mouth but thought the level of dryness was “normal.” At the time, my health was so good that I did not even have a primary care provider. Since then, my disease has progressed to include comorbidities of orthostatic hypotension, Raynaud’s phenomenon, and peripheral neuropathy. I now see five specialists on a regular basis. My Sjögren’s symptoms have also worsened and fatigue is the symptom that affects my quality of life the most.

My fatigue takes different forms. I never feel rested and always wake up feeling tired. There are times when I feel as if I’ve literally hit a wall and need to immediately sit down and take a break. At times I can’t even lift my arms.

Intervention: Unfortunately, at this time there is no medicine approved for Sjögren’s that treats fatigue. I knew I had to do something to manage my fatigue to maintain and improve my quality of life. I started keeping a journal of when the fatigue worsened. I tracked the level of fatigue, frequency, time of day, activities during that day and the previous day, and level of stress. I tried to identify what activities would increase fatigue and what activities might lessen it. I found that my peak energy is early in the day and decreases significantly by midday. Stress definitely increases all of my Sjögren’s symptoms, including fatigue. Debilitating fatigue occurs most often when my schedule is overloaded. As long as the fatigue is not debilitating, I found that exercise can temporarily make the fatigue go away.

Maintenance: Based on my analysis, I now schedule all appointments for the morning. I limit errands to 1-2 each day and do them in the morning. For the first time in my life, I hired house cleaners. I would rather save my energy for more fun activities! I stay active and exercise regularly, where I again try to schedule this for the morning. I also know that I should not plan other activities like laundry or errands on days with a heavy workout. I take a 1-2 hour break midday, then decide what else to accomplish the rest of the day based on my energy level after the break. I rarely go out in the evening.

Quality of Life: Despite my Sjögren’s, I still do quite a bit of traveling, both in the United States and internationally. I understand that a trip will result in an enormous amount of fatigue. I do not schedule any appointments or events for a week after I return. I accept this as the price I pay to pursue my interests and continue to travel.

Although fatigue is still my most challenging symptom, scheduling my activities to minimize fatigue has reduced its impact on my life to a more tolerable level. I’ve accepted that I have a constant level of fatigue. I continue to do the activities I enjoy most – running and traveling among them. I’m not going to let my Sjögren’s and fatigue stop me from living a fulfilling life.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/sjogrens-fatigue-non-therapeutic-lifestyle-adjustments-to-help-manage-my-most-problematic-symptom/