Promoting optimal care for Sjogren's, a common, serious, systemic disease.
SJOGREN'S CARE
Newly Diagnosed
You just got diagnosed with Sjogren's. Where do you start? This page will help you get oriented to Sjogren's disease, including links to excellent introductory resources. You will also learn about the core health team that Sjogren's patients need and what role each of them plays in your care.
This section reviews various aspects of caring for Sjogren's.
Coping, Communication, & Gaslighting
Acceptance, self-compassion, and communication are important for coping with Sjogren’s and countering gaslighting from family, friends, and yourself. This page provides resources and practical tips and strategies for improving your overall relationship with yourself and others.
Autonomic Disorders: Evaluation & Management
- Find out if you have symptoms that suggest dysautonomia.
- Learn how to advocate for evaluation of POTS and other types of dysautonomia using key articles from the peer reviewed literature.
- Learn information that you can share with your doctors about medication and lifestyle management of dysautonomia.
- Find resources that you can use to counter misinformation and dismissive treatment (gaslighting) regarding your symptoms.
Dysautonomia
Dysautonomia refers to any disorder of the autonomic nervous system. Most people with Sjogren's have some version of dysautonomia, even if it is mild. Autonomic disorders may cause or contribute to Sjogren's symptoms such as fatigue, brain fog, and gastrointestinal (GI) motility problems. Because many clinicians remain unfamiliar with autonomic disorders, self-advocacy is key to getting care.
POTS (Postural Orthostatic Tachycardia Syndrome)
This page reviews the symptoms experienced by POTS patients, explains how it is diagnosed, and offers specific handouts for clinicians, including detailed instructions for how to do a home standing test.
POTS is one of the most common types of dysautonomia seen in Sjogren's. A lot can be done to manage POTS and improve symptoms such as fatigue, lightheadedness, brain fog, etc. POTS symptoms may precede other Sjogren's features, including dryness. This page links to multiple resources, including an explanation of how POTS differs from Orthostatic Hypotension (OH).
Updated 01-20-2024