• Sarah Schafer, MD

Exercise helps Sjogren's- here's how to do it safely

Updated: May 22

It can seem crazy to even think about exercising when you live with almost constant flu-like symptoms such as fatigue, muscle aches, and malaise. When you have these symptoms with the flu, exercise is a bad idea because the your body is in an acute inflammatory state. Sjogren’s creates a chronic inflammatory state. It is not the flu, even when it feels like it. As long you don’t overdo it, exercise reduces chronic inflammation. Studies show that cardiovascular exercise, in particular, is helpful for Sjogren’s (162, 163). It reduces fatigue, brain fog, and depression. Patients who exercise often report an increased sense of wellbeing.

Despite its benefits, many patients fail exercise programs because they try to do too much too fast, don’t stick with it, or chose activities that worsen their symptoms. This blog post introduces some tools that can help you exercise safely and effectively. Sjogren’s Advocate exists because I exercise. Cardiovascular (aka “cardio”) exercise, especially swimming, helps me feel well enough to focus on writing for a few hours most days. People often make the false assumption that because I exercise every day, I must not be that sick. While exercise has greatly improved my life, I still live with disabling fatigue. I need to rest for several hours every afternoon, followed by a swim, in order to function from 4-7 pm. By 7 pm, I’m counting the minutes until bedtime, usually 8:30 pm. This may not sound like an inspiring success story, but it is a vast improvement over earlier years when I was in bed almost all day with severe flu-like symptoms, brain fog, and lightheadedness.

Exercise is a management tool, not a cure for Sjogren’s.

If you were an avid exerciser before getting sick, you probably won’t be able to return to your previous level of fitness. Getting back to the "old you" is a setup for disappointment. It is important to accept your body as it is and have realistic exercise goals such as feeling and functioning better.

It can be challenging to figure out what type and intensity of exercise works best for you. The key is to learn to listen to your body and its needs and adjust accordingly. This involves a trial and error process. It takes time and patience to learn what good exertion feels like versus overdo that will set you back.


How I customize my exercise. Because I have inflammatory arthritis, I cannot do high impact activities. I mostly swim and ride my bike, along with easy core and strength training. I have learned that 30-35 minutes is my upper time limit for exercise of any sort. Longer than that increases my fatigue. My energy is at its best during the two to three hours just following exercise, especially if I include some high intensity intervals. It took 3-4 months of adding high intensity intervals to my moderate intensity swimming before I noticed a significant improvement. Fatigue, but even more so brain fog, continued to improve for a full year. The benefit persists to this day. However, if I miss even one day of swimming, I feel terrible!

It is important to check with your clinician before starting any new fitness program. Sjogren’s is a serious disease. Lung disease, inflammatory arthritis, and other serious systemic complications should be discussed with your clinician, and appropriate accommodations made before you start exercising.


Special considerations


Dysautonomia

If you have high fatigue, lightheadedness, or standing intolerance, it is important to first find out if you have a malfunctioning autonomic nervous system, also known as dysautonomia. Postural tachycardia syndrome, or POTS, is one of the most common forms of dysautonomia. Without adequate dysautonomia management such as appropriate medications, electrolytes, and hydration, an exercise program may be more detrimental than helpful. Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/ CFS)

If you have Sjogren’s with severe fatigue and were told that you also have ME/CFS, it is important to make sure that this is actually the case. Many clinicians don’t know how to tell the difference, or why it is important to distinguish Sjogren’s and ME/CFS. While they share similar symptoms, Sjogren’s and ME/CFS have important differences, particularly in how they respond to exercise. If you have been told you have ME/CFS, do not start exercising! ME/CFS patients may be harmed by exercise programs.


How to safely exercise


I highly recommend watching Dr. Nicole Miranda’s presentation from the 2020 Dysautonomia Conference.* Here are a few important points to keep in mind:

1. She recommends the gentler Children’s Hospital of Philadelphia (CHOP) exercise protocol, rather than the more aggressive Levine protocol, which often makes people feel worse before they feel better.

2. At first glance, the CHOP protocol seems to emphasize strength training. The main role of the strength training portion is to prevent injury and support cardio activities. Most of the fatigue and brain fog help comes from the cardio portion of the CHOP protocol.

3. Sjogren’s patients without dysautonomia symptoms are often able to start cardio exercises right away. Remember to start small and increase very slowly. The CHOP protocol and Dr. Miranda explain how to deal with setbacks.

4. Stick with it even though you may not feel any obvious benefits for many months.


Developing an exercise program is one of the best ways to reduce Sjogren’s inflammation, improve overall health, and manage some of the more debilitating symptoms of Sjogren’s.


By: Sarah Schafer, MD and Sjogren's patient.


* Please note: I'm not sure how long Dr. Miranda's talk will be available for viewing.



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