Hi. I’m sorry you are suffering. I have similar pain and neuropathy from Sjogren’s. I have Primary Biliary Cholangitis, which caused liver cirrhosis. I had a liver transplant last August. My neuropathy symptoms, plus severe back and join pain, started in the fall. I saw a neurologist in March who thought I might have Sjogren’s, as PBC and Raynaud’s Syndrome (which I also have), are all ancillary. So, labs confirmed it. Many people with Sjogren’s do not get these “extra glandular” symptoms.

My neuropathy continues to increase, although the sharp pains have declined unless I drive for a couple hours, then the pain in my right leg shin area limits my ability to stand. I’ve always ate fairly well, but as recommended by experts and patients regarding neuropathy, as well as for Sjogren’s, I eat no longer eat refined sugar or flour, I have a low carb diet, lots of anti-inflammatory foods, some suggested supplements, and walk a lot and exercise. So, I believe this is helping. I also take 200-300 mg Gabapentin at night.

My back and joint pain is quite severe, however, so my neurologist referred me to a neuromuscular MD who I see in September.

You’ll find excellent patient advice and resources on the Connect neuropathy discussion group, so when I joined I went through all of those. There is also a Sjogren’s discussion which you might find helpful.

This is a good website -https://www.sjogrensadvocate.com/. Ankther website has some good patient discussions on Sjogren’s- https://www.smartpatients.com/. And, there area number of other websites that are helpful. John Hopkins has one of the more detailed websites on Sjogren’s neuropathy. And, there’s medical journal articles you can find by web searching.

Are you under a neurologist’s care? I didn’t get anywhere with Rheumatology Department at John Hopkins, which is the regional medical center for my area. I hope your experience with your rheumatologist is helpful, I do think they are key for long term care.