• Sarah Schafer, MD

Dysautonomia intro and conference

Updated: Nov 17


Do you have lightheadedness, GI motility problems, or heat intolerance?

These are just a few of the many Sjogren’s features that may be caused by abnormal autonomic nervous system function. The medical term for this is dysautonomia. The list of autonomic symptoms is very long. The autonomic nervous system does many things. Here is a good description and illustration of the autonomic nervous system.

Even in its milder forms, dysautonomia may contribute to fatigue, brain fog, nausea, and lack of vitality in Sjogren’s.

Dysautonomia impacts more than half of Sjogren’s patients.

In mild cases, symptoms may not be noticed. Quite often, dysautonomia manifestations are overlooked or treated dismissively. The impact on function and quality of life may be severe, especially when the cardiovascular system is involved. Please refer to the new dysautonomia webpage and resources page for more information.

Many rheumatologists have not been trained to recognize dysautonomia. This often makes it difficult to get diagnosis and treatment. All too often, dysautonomia symptoms are mislabeled as anxiety or functional neurologic disorder.

The 2020 Dysautonomia Conference

A group of outstanding experts gave a number of talks at the Dysautonomia International virtual conference held Oct. 15-18, 2020. I was able to view about one third of the lectures live. I plan to watch many more once they are posted online. Please refer to the conference information to register. You must register to have temporary access to the video recordings.

While a variety of topics were covered, the most common was cardiovascular dysautonomias, including Postural Orthostatic Tachycardia Syndrome (POTS).

Repeated themes from the conference

  • Sjogren’s was mentioned multiple times as the #1 autoimmune disease associated with autonomic dysfunction.

  • Sjogren’s is underdiagnosed. Dysautonomias are underdiagnosed. Sjogren’s patients often have undiagnosed dysautonomias. There is a huge need for medical education for both conditions.

  • More research is needed to determine the underlying cause(s) of dysautonomia. Biomarkers are needed. Treatments that address the underlying causes are needed, as opposed to broad brush symptom control. Of course, the same can be said for Sjogren’s.

A few conference highlights

  • Please note: I will go into more detail when I provide brief reviews of individual lectures.

  • 60 % of Sjogren’s patients develop small fiber neuropathy (Kamal Chemali, MD)

  • 50 % plus of Sjogren’s patients have abnormal autonomic function, (Chemali, Brent Goodman, MD ) and 66 % have abnormal autonomic testing (Chemali)

  • Even if you have an autoimmune disease, it is important to look for other factors that contribute to dysautonomia/ SFN. The more common ones include low B12, high B6 (one doctor said do NOT take multivitamins!), anemia, thyroid disease, weight loss, being underweight, low sodium. High triglycerides, high cholesterol, and high glucose (even at prediabetes levels) can also contribute.

  • Combine medication and non-medication strategies for cardiovascular dysautonomias such as POTS for best results.

  • Treatment, including exercise therapy, for all forms of cardiovascular dysautonomia must be customized. This involves a lot of trial and error, and takes patience and determination.

  • There were some differing opinions by various specialists on the medical management of POTS, although recommendations around non-medication strategies were fairly uniform.