Small Fiber Neuropathy

This happened to me. My would discuss with ur nuerologist that u need his/ her help to confirm the dx. I was going for years with such weakness. It shouldn’t have been dismissed by my rheumy at the time.

I had leg weakness too. Sjogrens I thought was the easiest. Can come with some interesting symptoms that go far beyond dry eyes/ dry mouth

Welcome @butterfly9, We do have to be our own advocates when it comes to our health. It's good to hear that you were finally able to confirm the small fiber neuropathy diagnosis. The best thing we can do to help is to learn as much as we can about our condition and what treatment options may provide some relief for our symptoms. My go to site for neuropathy is the Foundation for Peripheral Neuropathy - https://www.foundationforpn.org/living-well/.

Do you mind sharing how long you have had the neuropathy symptoms and any treatments you have found helpful?

Gm. Hard to say really. I have an auto immune mixed bag. Currently dx with sle, fibro Sjogrens and POTS which I am seeing occurring more in lupus/ Sjogrens warriors. I had the weakness down my right side for like a year. My balance was off. I would definitely address this issue with a neurologist and not be dismissed. Unfortunately with some of us.. another pair of eyes is needed. I was sent out to Johns Hopkins. To see a nuero rhuemy. They don’t have this where I live. I am trying to find the most resources since my only daughter also has been dx with Sjogrens.

I was initially dxed with Raynauds, but 30 years later it morphed into small fiber neuropathy. I also have significant RLS. They just all seem to meld together to annoy me! Many years ago a rheumatologist suggested I put a magnet on a clothes pin and use it to keep a pair of cotton gloves clipped to my refrigerator. Wear them when getting anything out of my freezer.

Sorry to hear your daughter has also been diagnosed with Sjogren's. If you are looking for other related discussions for specific questions you might have the search function on Connect is pretty good. Just type in your search words in the search box at the top of the Connect screen to see a list. Here are the search results using "Sjogrens" - https://connect.mayoclinic.org/search/?search=Sjogrens++.

If you haven't already seen the site, the Sjögren's Foundation has a lot of helpful information: https://sjogrens.org/understanding-sjogrens/resources/brochures-resource-sheets

Thank u. Ppl who understand. That helps

When I was 20 I had a pyonidal cyst removed from my tailbone area and ever since I have had an odd feeling on my right outer lower thigh. When I touch it it feels as if I'm wearing some invisible piece of clothing over my skin. This has gone on pretty much all my life (I'm 75) and I suspect that a nerve was damaged during the operation. But starting a year or so I began having a sensation that my legs are wet and cold any time the temperature is below 70 degrees or so. I have mentioned this to most of my doctors and they mostly blame it on one or the other of the medications I take (I have melanoma, coronary heart disease and diabetes). It never occurred to me until I read something on-line that it could also be caused by degenerative spinal damage compressing the already damaged nerve. I will bring this up with my primary care doctor the next time I see her. By the way I did have a neurologist do a rather painful electrical test on my leg nerves and he told me afterwards that there was nothing wrong with the large nerves but that the sensations of temperature etc.are carried by the small nerves and there's no way to test them.

Thanks for your reply.

Was diagnosed with MS about a year ago. Recent biopsies on my right leg show small fiber neuropathy, and other symptoms to include xerostomia and dry eye, my neuro now tells me that I also suffer from Sjogren's. Recently began a 6 mo protocol of MetaNX, a supplement, quite expensive, and is given by prescription only where I live. It is not covered by insurance, but have been able to get it for about $200 for each 90-day supply. We will see if it helps with the neuropathy in arms and legs. MetaNX is for diabetic neuropathy but, supposedly, has helped some with small fiber neuropathy related to Sjogren's. Though some pharmacies claim that something that begins with an F is a generic for it, further research says it isn't. Some who have been using it for sometime found that when they switched to this claimed generic, symptoms worsened immediately (online). Good wishes to you on your journey. Like you, am in my mid 70's, and newly diagnosed with both the MS and Sjogren's. MS fatigue is the pits! Cognative issues when manifesting the pits. Not able to sleep at night, the pits. So much more. But, it is a travesty that they put those of us our age on a shelf, so to speak because it is believed that the more intensive treatments offered to the young may only help 30% of those are age (or so I am told). My fatigue thus far has been managed with twice a day, but is not working as will as it did a a few months ago. But since it is prescribed "off label," my insurance doesn't pay for any of it. LDN seems to the next medication that my neuro may try; it may help with pain and fatigue (will stop the Modafinil). Again considered off label, cost will come out of my pocket; insurace will not cover it. However, both this meds seemingly have helped those with MS, off label or not.