Sjogren's & Nerve Pain: NEW Doctor Guidelines You NEED to Know
If you’ve ever described your numbness, tingling, or burning nerve pain to a doctor, only to be told it's "just stress" – even though you have Sjogren’s or strongly suspect it – you need to hear this.
Hi, I'm Dr. Kara Wada, a quadruple board-certified allergy immunology physician and someone who lives with Sjogren's Disease. For the first time ever, we have official clinical practice guidelines specifically for nerve involvement in Sjogren's Disease. Today, I’ll break down what they say, explain the seven main types of nerve damage in plain English, and give you an action plan for your next doctor's visit.
I see a heartbreaking pattern in my practice: years of strange, seemingly disconnected symptoms. Numbness in hands and feet, tingling that comes and goes, burning feet that keep you awake at night, dizziness or a racing heart when you stand up, unexplained digestive or bladder changes. And the response patients often receive is, "Your labs are fine. It's probably just anxiety."
Here's what many doctors don't realize: for a significant number of people, these nerve symptoms can show up years before the classic dry eyes and dry mouth of Sjogren's Disease. That gap between when neurologic symptoms start and when you finally get diagnosed is where suffering lives, and it's where medical gaslighting happens. These new guidelines were created to help close that gap.
Landmark News: NEW Official Sjogren's Nerve Guidelines
A panel of top experts – neurologists, rheumatologists, and Sjogren's specialists – spent three years reviewing the science to create this consensus document. The result is a unified, evidence-based framework for understanding nerve involvement in Sjogren's Disease.
They identified seven main categories of peripheral nervous system problems (everything outside of your brain and spinal cord).
The 7 Categories of Sjogren's Nerve Damage
Mononeuropathy: Damage to a single nerve. Think carpal tunnel syndrome or trigeminal neuralgia (which causes severe facial pain).
Large Fiber Neuropathy: These nerves control balance, vibration sense, and muscle strength. When affected, you might trip more, feel unsteady, or notice weakness.
Small Fiber Neuropathy: This one is common and frequently missed. It causes burning, stinging, or electric shock sensations, usually in the hands or feet. Temperature sensation changes can also be a part of this. The frustrating part is that standard nerve tests often come back normal, and the specialized tests aren't always 100% conclusive.
Demyelinating Polyradiculopathy: A mouthful, I know! This is widespread, immune-driven nerve damage causing significant weakness and sensory loss.
Ganglionopathy: A more severe form where the nerve cell bodies themselves are damaged. This can cause profound balance issues and spatial disorientation (you can't sense where your limbs are without looking).
Vasculitic Neuropathy: Nerve damage from inflammation of the tiny blood vessels that supply your nerves.
Autonomic Neuropathy (POTS & Dysautonomia): This affects the nerves controlling your "automatic" body functions: heart rate, blood pressure, digestion, bladder function, and sweating. This is where POTS, dysautonomia, racing heart, and gut motility issues often come from.
You don't need to memorize these categories. What matters is that your symptoms are now more formally recognized, named, and categorized. They're not "vague, weird feelings"; they're distinct types of neuropathy with recommended evaluation and management pathways.
Why This is a Game Changer for YOU
It pushes doctors to ask better questions, looking beyond dryness to actively screen for nerve symptoms.
It creates a roadmap for collaboration between neurologists and rheumatologists. No more getting bounced between specialists without a plan (at least, that's the hope!).
It VALIDATES your experiences. When you say, "My feet burn at night," there's now an official document that says, "This deserves proper evaluation," helping to decrease the dismissive "it's just stress" responses.
Your 4-Step Action Plan for Your Next Doctor's Visit
How can you use this information practically?
Document Your Symptoms in Detail: When did they start? Where exactly do you feel them? What makes them better or worse?
Group Your Symptoms by Category:
Sensory: Numbness, tingling, burning, electric shocks.
Motor: Weakness, tripping, dropping things.
Autonomic: Dizziness, heart racing, digestive/bladder changes, sweating issues.
Bring the Guidelines to Your Visit: You can simply say, "I read the new clinical practice guidelines for peripheral nervous system involvement in Sjogren's. Given my symptoms like burning feet and dizziness, can we talk about whether I might have neuropathy and which category it might fit?"
Ask What the Plan Is: Do I need specific nerve testing? Do my symptoms sound like small fiber, large fiber, or autonomic involvement? What would change about my treatment if we confirm this is Sjogren's-related neuropathy?
You're not telling your doctor what to do; you're opening an informed, collaborative conversation.
If you're reading this and thinking, "That's me, that's my body," you're not overreacting, and you're not alone. These guidelines exist because thousands of patients like you kept speaking up.
If this was helpful, please subscribe for more plain-English breakdowns of autoimmune topics. For personalized care from someone who truly gets it, check out the new patient packages at the Immune Confident Institute. And for daily support from people who understand this journey, join our free Success with Sjogren's Sisterhood on Facebook. (All links in the description).
Remember, advocating for yourself with better information isn't being difficult; it's how you get the care that matches what your body has been telling you all along.
