I’ve discovered that Sjogren’s is a major factor in peripheral neuropathy. My own digging shows a huge variety of types and symptoms. I’m curious about your specific diagnosis and what you feel. Are your blood tests positive or negative?
I’m asking because of an upcoming neurology appointment. I have a Sjogren’s diagnosis but the complexity of neuropathy—all the classifications and severities—is confusing. I’m not self-diagnosing; I just want to be informed so I can talk to the doctor without constantly looking up terms.
I’ve seen classifications based on:
Fiber size: Small vs Large
Nerve count: polyneuropathy vs Mononeuropathy vs multiple mononeuropathy etc
Distribution: distal vs proximal / length-dependent vs non-length dependent
It gets complicated when papers mix these, like “distal axonal polyneuropathy” or “sensory ganglionopathy.” I’ve been looking at meta-analyses for better data since individual studies are often too small.
I deal with small fiber neuropathy, autonomic issues (POTS and temp regulation), plus large fiber axonal/demyelinating motor neuropathy.
The SFN feels like random burning or stings—sometimes heat makes me feel like I’m covered in snow. At night, it’s like being poked with sharp pins in various spots, including my feet. Certain fabrics feel like sandpaper on my skin. The motor issues cause weakness in my left foot, which also has a constant buzzing sensation. It’s annoying but I manage.
I have non-length-dependent SFN along with demyelinating large fiber neuropathy affecting both legs below the knee. I’m also worried about potential trigeminal neuralgia because of strange sensations in my teeth and increasing pain on the right side of my face, though it hasn’t been officially diagnosed yet.
I appreciate the info you shared. I’m wondering if my specific symptoms—which I suspect were triggered by Amlodipine—might point to a certain type. It’s peripheral and gets significantly worse when I move, exercise, try to nap, or feel stressed, particularly in my feet.