Part 4: Is it POTS? Debunking myths

Postural orthostatic tachycardia syndrome (POTS) is one of the most common neurological disorders impacting Sjogren’s patients. Most clinicians are not trained to diagnose and manage autonomic disorders (dysautonomia) such as POTS. Clinicians often default to psychological explanations such as anxiety when they encounter complex symptoms that they do not understand. Even when clinicians are well meaning, this is a type of medical gaslighting. Self-advocacy and perseverance are key to diagnosis.

Click here to learn how to advocate for dysautonomia diagnosis and treatment.

This blog post will help you counter myths about POTS and other neurological disorders that impact Sjogren's patients.

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MYTH #1: POTS and other neurological disorders are rare in Sjogren’s

Reality The majority of Sjogren’s patients report neurological symptoms, including dysautonomia symptoms (50).

Self-Advocacy Tool

Print out and highlight this statement from the Sjogren’s Foundation website:

Our recent Living with Sjögren’s patient survey found that neurological-related conditions had the third highest prevalence when categorized by body system or type – 83% of respondents had at least one neurological-related condition. ~ The Sjogren’s Foundation June 6, 2022

MYTH #2 - POTS and other neurological disorders are limited to SSA or SSB positive Sjogren’s patients.

Reality Neurological disorders, including autonomic disorders, are more prevalent in patients without SSA or SSB (178, 184), often referred to as "seronegative Sjogren's".

Self-Advocacy Tool

Print out citation 178, the entire article. Highlight the third paragraph of the abstract. Point out that only 42.5% of Sjogren’s patients with small fiber neuropathy were positive for SS-A (anti-SSA antibodies).

MYTH #3 - Sjogren’s patients with POTS and other neurological disorders almost always have sicca symptoms.

Reality Neurological features often precede the onset of sicca in Sjogren’s. These patients may not fulfill the Sjogren's classification criteria for many years after the onset of neurological symptoms. A lip biopsy is often recommended to look for Sjogren’s, because it is sometimes positive before the patient notices dryness. A negative lip biopsy does not rule out Sjogren’s. Lip biopsy results must be considered in the context of the entire clinical picture.

@Dysautonomia. “3. Neuro manifestations can occur a decade before sicca. 4. If a Sjogren’s patient has dysautonomia, this requires a tailored treatment plan to treat autoimmunity, then symptomatic therapies to manage symptoms. Don’t dole out beta blockers and fail to treat the Sjogren’s itself.” Twitter, 17 Jun 2022. https://twitter.com/Dysautonomia/status/1538010442005565440?s=20&t=0vHbC1vXWm920kF8vRrFww

Self-Advocacy Tool

Print out the citation 202, the entire article. Highlight these sentences from page 6 of the article:

“Neuropathy, however, often precedes the development of sicca syndrome, rendering the recognition of Sjogren’s syndrome during the early stages of the disease course nearly impossible. “

MYTH #4- POTS and other autonomic disorders are caused by anxiety

Reality Autonomic disorders are physical illnesses that require medical management. The physical symptoms of POTS often mimic the physical symptoms of anxiety, leading to misdiagnosis. Labeling patients with anxiety deprives them of proper medical management for a physical condition.

Self-Advocacy Tools

Share article #1 with clinicians who blame autonomic symptoms on anxiety or stress. Share articles #2 and #3 with clinicians who do not have a detailed understanding of POTS and/or orthostatic hypotension (OH). 1. Copy this entire article by Raj et al, and highlight this quote on Page 5:

Raj et al. found that adult POTS patients did not have increased current or lifetime prevalence of anxiety disorders.17 POTS patients, however, scored as moderately anxious compared to the background population using a non-discriminating questionnaire that measured both somatic and psychological symptoms (Beck Anxiety Inventory). In contrast, POTS patients did not have elevated anxiety on a questionnaire weighted to measure psychological anxiety symptoms (Anxiety Sensitivity Index). They concluded that the clinical appearance of anxiety in POTS was likely related to the illness rather than representing an anxiety disorder.

2. Article: A good POTS overview, including management tips. 3. Article: Overview of OH diagnosis and management. Part 2 and Part 3 of this blog post series explains the difference between POTS and OH.

MYTH #5- POTS and other autonomic disorders are caused by deconditioning.

Reality POTS and OH cause deconditioning. This deconditioning creates a vicious cycle of making symptoms worse. However, telling patients they just need to exercise can backfire. There are special exercise programs for POTS and OH, but this topic is too complex to discuss here.

Self-Advocacy Tool

Copy this one-page summary by Dr. S. Blitshteyn, a renowned dysautonomia expert.

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