Peripheral Nervous System Guidelines: Introduction to Sjogren’s Neuropathy Care
- Sarah Schafer, MD
- 18 hours ago
- 3 min read
Ongoing Care - Part 6A
To get the most out of this post, including finding links to other posts in the Ongoing Care series, read HOW TO MONITOR SJOGREN'S.
Please note that this post is NOT a handout, a guideline, an official recommendation,
or medical advice.
INTRODUCTION
The Peripheral Nervous System (PNS) Clinical Practice Guideline (CPG), produced by the Sjogren’s Foundation, has been accepted for publication.
This powerful resource is expected to significantly improve the ability of clinicians to diagnose and treat neuropathies caused by Sjogren’s disease.
Although the preprint of the PNS Clinical Practice Guideline has been available since December 2, 2025, the final, officially edited journal article and the accompanying summary (in PDF form) from the Sjogren’s Foundation have not yet been released. I advise waiting until these are published before discussing them with your clinicians. The preprint version is difficult to navigate due to its lack of proper formatting and page numbers, and the final published version may contain minor but important changes. For clarity and ease of use, it is best to use the PNS CPG in conjunction with the upcoming summary from the Sjogren’s Foundation.
WHAT IS NEUROPATHY?
Neuropathy refers to damage or dysfunction of the peripheral nervous system (PNS). The PNS is the part of your nervous system that is outside of your brain and spinal cord. The PNS CPG provides detailed guidance on evaluation and treatment of the various neuropathies caused by Sjogren’s, including cranial neuropathies(e.g., trigeminal neuropathy) and ganglionopathy.
Neuropathy does not include central nervous system (CNS) manifestations, which impact the brain and spinal cord.
NOTE: CNS manifestations are not covered in the PNS CPG.
WHY IS THE PERIPHERAL NERVOUS SYSTEM (PNS) CLINICAL PRACTICE GUIDELINE (CPG) SO IMPORTANT?
The new PNS CPG provides doctors with a roadmap for treating neuropathy, a major, yet often overlooked, systemic manifestation of Sjogren’s disease (SjD). Neuropathy affects over half of all SjD patients, but routine neurological assessment has long been neglected.
Sjogren's can cause over a dozen types of neuropathy, but small fiber neuropathy (SFN) and autonomic neuropathy (dysautonomia) are the most prevalent forms. SFN and dysautonomia are frequently misdiagnosed as fibromyalgia, anxiety, or functional neurological disorder (FND) because medical education does not adequately address the neurological manifestations of Sjogren’s disease. The pervasive lack of clinician awareness leads to delayed diagnosis, resulting in severe loss of quality of life and, in some cases, irreversible nerve damage.
WHAT SYMPTOMS DOES NEUROPATHY CAUSE?
Each type of neuropathy caused by Sjogren’s disease has its own set of symptoms.
The following symptoms could indicate neuropathy:
Burning pain, tingling, or numbness, usually on the skin. These symptoms often occur together but you may only have one dominant sensation.
Shooting pains
Trouble with balance or gait (being able to walk straight)
Facial pain, numbness, weakness, or drooping
Muscle weakness (sudden, localized, severe, or persistent)
Extreme fatigue and/or cognitive problems*
Standing intolerance or lightheadedness*
Rapid heart rate*
Heat or cold intolerance*
Abnormal sweating, including no sweating at all*
Bladder dysfunction*
Note: This is not a complete list.
* indicates common symptoms of autonomic neuropathy (dysautonomia)
WARNING: If you experience sudden weakness, paralysis, loss of sensation, dizziness, loss of balance, or difficulty speaking, this could be a medical emergency such as a stroke, which requires immediate attention.
Strokes, which occur in the central nervous system (CNS), may occasionally mimic a peripheral nervous system (PNS) manifestation. Stroke symptoms usually appear suddenly, while most, but not all, neuropathies have a more gradual onset.
Click here to learn the warning signs of stroke.
THE PNS CPG: A KEY COMPONENT OF YOUR SELF-ADVOCACY TOOLKIT
Once the official document is published, you will be able to use statements from the PNS Clinical Practice Guideline (CPG) to advocate for neuropathy care.
Because the PNS CPG is designed for clinicians, the content is necessarily complex and technical. To help you get the most out of this document, I will publish a series of blog posts that offer practical tips on using the PNS CPG to counter misconceptions and advocate for the care you need.
For example, if you’re struggling with symptoms of dysautonomia (autonomic neuropathy) and your doctor won’t test you for it because he/she thinks it’s rare, you will be able to use this statement from the PNS CPG to make a case for an evaluation: “Autonomic nervous system impairment can occur in up to 50% of patients with SjD.”
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