.png)
Peripheral Nervous System Guideline: Essential Self-Advocacy Toolkit
- Sarah Schafer, MD
- Dec 12, 2025
- 5 min read
Updated: Jul 19
Ongoing Care - Part 6
INTRODUCTION
More than half of Sjogren's patients have at least one type of neuropathy.
Neuropathy refers to damage or dysfunction of the peripheral nervous system (PNS), the network of nerves outside the brain and spinal cord. The most common types, small fiber neuropathy and autonomic neuropathy (dysautonomia), are often missed or mistaken for anxiety or functional disorders.
This problem is a direct consequence of inadequate Sjogren's education. What little training is offered usually does not adequately address PNS disorders (neuropathies).
The newly published Clinical Practice Guideline for Peripheral Nervous System Manifestations in Sjogren’s Disease (PNS CPG) provides the solution to this system-wide gap in care. By establishing a clear, evidence-based standard for diagnosis and treatment, these guidelines give clinicians the concrete tools they need to recognize and properly manage Sjogren's neuropathies. This final, definitive version replaces the previous preprint, which was shared on an earlier version of this post in December 2025. PLEASE NOTE: You will need to use a computer to get the most out of this page. The Wix platform is not fully compatible with tablets, meaning you may miss important content. Additionally, like many pages on Sjogren's Advocate, the information is too detailed to easily read on a mobile phone. Whenever possible, Sjogren's Advocate is best viewed on a laptop or desktop.
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.
WHY IS THE PERIPHERAL NERVOUS SYSTEM CLINICAL PRACTICE GUIDELINE (PNS CPG) SO IMPORTANT?
The new PNS CPG provides doctors with a detailed, evidence-based roadmap for diagnosing and treating neuropathy.
Sjogren's can cause over a dozen types of neuropathy, but routine neurological assessment has long been neglected. The PNS CPG also covers common comorbidities that cause or contribute to neuropathy in Sjogren's. Most doctors will not know that these new guidelines have been published. This guideline is crucial because neurological manifestations, despite being major contributors to fatigue, pain, and cognitive dysfunction ("brain fog"), are often overlooked by both clinicians and researchers.
Few doctors are familiar with the high prevalence and burden of PNS manifestations. Current medical education programs usually state that PNS manifestations impact about 20%, when in reality, more than 50% have neuropathy. The new PNS CPG helps raise clinician awareness of these long-neglected neurological disorders that have an outsized impact on fatigue, function, and quality of life. Patients are key to raising awareness about these guidelines.
In the United States, clinicians rely heavily on the American College of Rheumatology (ACR) as their primary information source for rheumatic diseases. However, the ACR does not publish or promote guidelines they did not produce themselves, and they have never made Sjogren's a priority.
To bridge this gap, a multidisciplinary team of experts, under the leadership of the Sjogren's Foundation, undertook a rigorous, independent process to create these evidence-based PNS Clinical Practice Guidelines. Because these guidelines are not promoted through standard ACR channels, patient advocacy is vital to getting them into the hands of neurologists and rheumatologists.
SELF ADVOCACY TOOLKIT: THE PNS CPG
What to Share With Your Doctors Provide a packet of all three documents—either printed or as PDFs—to your rheumatologists, neurologists, and any other specialists who are helping manage your neurological issues.
The Executive Summary PDF is linked directly below.
The two journal articles can be accessed by clicking on the salmon-colored links to the citation numbers 288 and 289. Once you are on the article page, click the box that says "FREE Full Text, PMC" to open the PDF. From there, you can save it on your computer to print out or share the PDF electronically.
The Three Key Documents
In all three documents, Sjogren's neuropathies are divided into three umbrella categories: mononeuropathies, polyneuropathies, and autonomic neuropathies. These categories detail specific screening practices and treatments for the many types of neuropathy within them.
An abbreviated version of the guidelines designed for quick clinical reference, focusing on core recommendations without lengthy academic text.
Self-Advocacy Highlight:
Page 1 provides an excellent, high-level overview of the massive clinical burden of peripheral neuropathy in Sjogren’s and outlines the core purpose of the PNS CPG.
2. Clinical Practice Guideline for Evaluation and Management of Peripheral Nervous System Manifestations in Sjögren's Disease (289)- THE OFFICIAL CPG
This the official guideline outlines the diagnosis and treatment of a wide spectrum of neuropathies. It also explains the rigorous process that was used to create this evidence-based resource.
Self-Advocacy Highlights: The Introduction, p.861, offers several notable quotes about the spectrum of neurological manifestations in Sjogren’s. This quote on page 865 can help doctors understand the high burden of autonomic disorders in Sjogren’s.
"Autonomic neuropathies: ANS impairment can occur in up to 50% of patients with SjD, with the potential to affect various autonomic systems and ranging from mild to severe autonomic failure."
3. Recommendations for Aligned Nomenclature of Peripheral Nervous System Disorders Across Rheumatology and Neurology. (288) - The "DICTIONARY" of TERMS Published alongside the official PNS CPG, this journal article acts as an essential reference tool to standardize terminology across medical specialties. This may sound boring, but you may need to clarify exactly what you—or your doctor—are talking about to avoid miscommunication.
During the early development of the guidelines, experts realized that neurologists and rheumatologists often defined the same conditions differently. This article was written to remedy that. Consistent terminology is essential when being cared for by a multidisciplinary team.
Self-Advocacy Highlight: If you have small fiber neuropathy (SFN) symptoms such as burning pain, tingling, electric shock sensations. or loss of sensation, but you are told its not neuropathy because your tests are normal, point your doctor to the top-left paragraph on page 388 and highlight:
"Routine nerve conduction studies do not detect small fiber neuropathy (SFN), and a skin biopsy or specialized neurophysiologic testing may be necessary to confirm the diagnosis." (Examples of neurophysiologic tests: Quantitative Sensory Testing (QST), Laser-Evoked Potentials (LEP) or Sudomotor (sweating) tests (such as QSART).
Please Note: The content on this page is evidence-based, backed by peer-reviewed citations, and tailored specifically for clinicians. Like all Sjogren’s Advocate content, this page is for educational purposes only and does not constitute medical advice.
Comments