Do you have dysautonomia?
Updated: Sep 20
Dysautonomia, or malfunction of the autonomic nervous system, is estimated to impact more than half of Sjogren’s patients. (49, 50, 51, 52, 53) Despite being correlated with overall symptom burden and Sjogren’s disease activity (50), dysautonomia is often overlooked. The onset may be subtle; patients usually do not seek diagnosis until symptoms become severe.
Abnormal autonomic control of heart rate and blood pressure, sweating, and digestion are especially common forms of dysautonomia in Sjogren’s. Full-blown cardiovascular dysautonomias such as POTS contribute to fatigue and cause significant disability. (49, 50)
In his 2017 article “Spectrum of autonomic nervous system impairment in Sjogren syndrome” Dr. Brent Goodman introduces the clear evidence that dysautonomia is widespread in Sjogren’s patients. He goes into much detail about this in his 2018 lecture: https://vimeo.com/267566774
Highlights from Dr. Goodman’s lecture:
1. Sjogren’s causes autonomic dysfunction of all types.
2. 50 % or more of Sjogren’s patients have measurable autonomic dysfunction.
3. Neurologic complications, especially peripheral neuropathies, are often associated with autonomic dysfunction.
4. Dry eyes and dry mouth often follow the onset of dysautonomia. SS-A is usually negative in Sjogren’s patients presenting with autonomic features. Lip biopsy is positive in about 3/4, making a Sjogren’s diagnosis particularly challenging.
1. A Sjogren’s diagnosis is often missed in dysautonomia patients. Many patients with dysautonomia and other neurologic presentations do not meet Sjogren’s classification criteria, especially early on.
It seems that autonomic dysfunction could be an important feature supporting a Sjogren’s diagnosis. It is my opinion that autonomic testing should be part of a basic Sjogren’s evaluation. ~ Sarah Schafer, MD and Sjogren's patient
2. Dysautonomia is usually missed in patients already diagnosed with Sjogren’s. While many neurologic features occur in Sjogren’s, dysautonomia is arguably the most prevalent and the most likely to be missed. Every rheumatologist and neurologist should learn about the Sjogren’s–dysautonomia link.
“You see what you look for. The more you look for it the more you see it”. Dr. Brent Goodman, https://vimeo.com/267566774 3. Dysautonomia correlates with symptom burden in Sjogren’s. In Sjogren's, orthostatic intolerance (you feel terrible when upright, especially standing) is often caused by autonomic disorders such as postural orthostatic tachycardia syndrome (POTS) or orthostatic hypotension (OH). Treatment can improve fatigue and overall quality of life. The first step is to get a proper diagnosis, as explained on this page.
4. Sjogren's is Always Systemic. It is so much more than sicca! Dysautonomia is just one example of the many common systemic features of Sjogren’s. Most health care providers don’t’ know to look for it.
Does it matter if you have dysautonomia?
Possibly. Some patients have measurable abnormalities but are not particularly bothered by their symptoms. Others have debilitating symptoms.
Symptoms such as abnormal sweating, gut dysmotility, or dizziness/ sweating / shaking/ fainting or near fainting with prolonged standing are common signs of abnormal autonomic function in Sjogren’s. There are medications and lifestyle interventions that help, especially with cardiovascular dysautonomias.
If you are symptomatic, it is a good idea to seek evaluation and treatment by a neurologist familiar with dysautonomia. It can take some time to find one who is experienced with this problem. Talk to your clinicians about your symptoms and offer articles, copies of this blog post and the link to Dr. Goodman’s video.