1. < Neuropathy

Autoimmune illness and small fiber neuropathy

Posted by Machak @machak, Jul 15, 2021

Greetings,

I was diagnosed over a long period of searching for reasons for a wide range of symptoms with Lupus/Sjogren’s Syndrome, and Small Fiber Neuropahy. My question was this: Can anyone point to some good resources for sfnp and autoimmune diseases? I am a doctoral health scientist, but very little is showing up in my usual resources.

Briefly, I started out with an elevated right hemidiaphram that went away before the sniff test, but showed up more and more frequently until they were able to see it paralyzed/paresis on the sniff test. This can last from days to weeks to up to 5months one year, but it comes bask (so far). Lung capacity can drop from over 5L in the inspirometer to 3.5L with no warning. In trying to find answers hey did a skin biopsy which “was indicative of small fiber neuropathy”, but no clue as to why. Eventually as symptoms build up through the years (difficulty swallowing, heart palpitations, temperature regulation, dry eyes, dry mouth, prickle/burning pains in various locations, joint sinovitis, to name a few) they came down to Lupus and Sjögren’s syndrome. Symptoms have slowly progressed, getting worse year by year until I had to retire early from CDC. After this long journey, I am still looking for how all of these things impact each other and “work together”, but my doctors all look at their one piece of the puzzle. I appreciate any leads you could share.

Interested in more discussions like this? Go to the Neuropathy Support Group.

athenalee | @athenalee | Nov 28, 2021
In reply to @regina59 "When you get some answers, please share. I too have been diagnosed with small fiber neuropathy..." + (show)
@regina59

When you get some answers, please share. I too have been diagnosed with small fiber neuropathy and Sjogren's Disease. These diagnoses were the result of the search for reasons for internal trembling, waking me up ever night. They started twenty months ao, I think from the cancer drug, Letrozol. Thisis certainly not confirmed by the cancer doctors.

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Hello @regina59. I also have PN due to Sjogren’s. Have you been to SjogrensAdvocate.com? It’s the most informative website I’ve found on Sjogren’s and SFN and other PN issues. SmartPatients.com is another.

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Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Nov 28, 2021
In reply to @rexsan20 "What test for small fiber neuropathy?" + (show)
@rexsan20

What test for small fiber neuropathy?

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@rexsan20 This is a discussion about small fiber neuropathy that may be of interest where you can connect with other patients who may have relevant experience. https://connect.mayoclinic.org/discussion/small-fiber-neuropathy/ Have you seen a neurologist and have a diagnosis of SFN?

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2 replies
Stretch | @stress | Nov 28, 2021
In reply to @jgraber "Hello, I’ve been diagnosed with small fiber neuropathy that is progressively getting worse. It started 20..." + (show)
@jgraber

Hello, I’ve been diagnosed with small fiber neuropathy that is progressively getting worse. It started 20 years ago with what my Doctors thought was endometriosis burrowing into the back of my pelvis and damaging the nerves. This caused “labor” type of pain from my sacrum into the rectum and causing shooting pains from the pelvis down my legs and around to my chest. It was absolutely horrible. I had a oophorectomy without estrogen replacement and this did nothing to help the Pain. I finally connected with a neurologist who treated me with neurontin, ibuprofen, and tramadol. I had flares of pain for 17 years but I could always get it back under control. After 17 years pain started in my feet, spread to my legs, arms and hands. This pain is horrible (aching, stabbing, squeezing, burning, numbness etc.). I was referred to a Well known UC pain clinic a few months ago. They did lots of blood tests. The only positive results were ANA and smooth muscle ab titer. There is a possibility that I have an autoimmune disease that may be causing the small fiber neuropathy. They are referring me to GI and rheumatology. It is a very long process especially when you are in agony. I worked as a school nurse for 15 years and I never took a sick day so I can handle pain. This is worse than child birth. I also recently developed changes with my digestion and temperature regulation.I don’t know if these are autonomic symptoms. This is a horrible, lonely condition.

Have you ruled out Type 2 Diabetes or pre Diabetes and an autoimmune disease? My A1Cs are good so I don’t have Diabetes or pre Diabetes.

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@jgraber <<…pain started in my feet, spread to my legs, arms and hands. This pain is horrible (aching, stabbing, squeezing, burning, numbness etc.).>>

Your afflictions/condition sounds awful! Regrettably, I’m going through your described pain progression at present, SFN starting in my feet ~2.5 years ago. Systemically, it feels like a large hand squeezing with a tight grip all over. This and IBS followed living with MECFS for 30+ years. I believe they are all interrelated neurologically but I can’t find much research to confirm or deny this but each is neurological in origin.

One young neurologist is suggesting a lumbar puncture to see if I’m eligible for IVIG treatment which he says works in about 30% of cases. I’m equivocating whether or not to go this route due to time, expense and uncertainty but the overall progression systemically is causing an incapacitating malaise with awful symptoms like insomnia and anxiety, not to mention the loneliness of isolation. I’ve otherwise been using Oxcodone and Methadone for the pain but this is getting less effective and will likely have to stop. Have you considered IVIG?

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rexsan20 | @rexsan20 | Nov 28, 2021
In reply to @jenniferhunter "@rexsan20 This is a discussion about small fiber neuropathy that may be of interest where you..." + (show)
@jenniferhunter

@rexsan20 This is a discussion about small fiber neuropathy that may be of interest where you can connect with other patients who may have relevant experience. https://connect.mayoclinic.org/discussion/small-fiber-neuropathy/ Have you seen a neurologist and have a diagnosis of SFN?

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No I have not

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one00100 | @one00100 | Dec 1, 2021
In reply to @jenniferhunter "@rexsan20 This is a discussion about small fiber neuropathy that may be of interest where you..." + (show)
@jenniferhunter

@rexsan20 This is a discussion about small fiber neuropathy that may be of interest where you can connect with other patients who may have relevant experience. https://connect.mayoclinic.org/discussion/small-fiber-neuropathy/ Have you seen a neurologist and have a diagnosis of SFN?

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Yes, my spouse, Ray has it. Multiple symptoms including heart and bp irregularities. It took years before finally going to Duke Hospital in NC. Now we are trying to get all his doctors to coordinate care. Not much luck so far...

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Dec 1, 2021

@machak I have an autoimmune disease so I’ve been collecting articles. This one about the rare diseases/NIH may give you a starting point.
https://rarediseases.info.nih.gov/
Also the Sept 2021 issue of Scientific American has several articles. I think that NIH might be your best bet.
If you have Netflix, watch the show ‘Diagnosis.’ It is a documentary about a doctor helping people search for difficult diagnoses. The physician seems very approachable. Good luck in your search! Will you keep me informed about what you learn?

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Machak | @machak | Oct 4, 2022

So, Here we are about a year and a half since I first posted this…. Just a quick recap, but since starting this discussion things have gone downhill with nerves and CNS. Worst is the short term memory which is frustrating my wife to no end. I have developed a pattern of forgetting stuff half way through. Worst is forgetting that I started cooking something and forgetting the oven is on (timers help, but they haven’t prevented me from making some major mistakes). Another favorite is “oh, while you are up can you get X, Y, and Z?” And I come back with maybe x, or z, but rarely remember all three or more unless I write them all down. More pins and needles and lack of coordination (dropping stuff) but the memory failures are more disruptive than even the pain. The only suggestion from rheumatology is to go back to the monoclonal antibodies, but when I tried that I ended up with a prostate infection that required surgery and a two week hospital stay, so i am very reluctant to go that route again. If this keeps going south I may end up moving to Charter house sooner than I had hoped!

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Oct 4, 2022
In reply to @machak "So, Here we are about a year and a half since I first posted this…. Just..." + (show)
@machak

So, Here we are about a year and a half since I first posted this…. Just a quick recap, but since starting this discussion things have gone downhill with nerves and CNS. Worst is the short term memory which is frustrating my wife to no end. I have developed a pattern of forgetting stuff half way through. Worst is forgetting that I started cooking something and forgetting the oven is on (timers help, but they haven’t prevented me from making some major mistakes). Another favorite is “oh, while you are up can you get X, Y, and Z?” And I come back with maybe x, or z, but rarely remember all three or more unless I write them all down. More pins and needles and lack of coordination (dropping stuff) but the memory failures are more disruptive than even the pain. The only suggestion from rheumatology is to go back to the monoclonal antibodies, but when I tried that I ended up with a prostate infection that required surgery and a two week hospital stay, so i am very reluctant to go that route again. If this keeps going south I may end up moving to Charter house sooner than I had hoped!

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Sorry to hear about the memory failures @machak. I ran across an article discussing why we forget and how our memory works that I thought was fairly interesting, it also included a couple of references on suggestions to help improve the memory which I think might be worth a try to see if they help.

-- The Psychology of Forgetting and Why Memory Fails:
https://www.verywellmind.com/forgetting-about-psychology-2795034

The article contained links to these two articles with suggestions:
-- Memory Tips That Will Boost Your Brain Power:
https://www.verywellmind.com/memory-hacks-that-will-boost-your-brain-power-2795357
-- 11 Methods for Improving Your Memory:
https://www.verywellmind.com/great-ways-to-improve-your-memory-2795356

Hoping you can keep with your original plans!

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abhishek80 | @abhishek80 | Jun 21, 2023

Please share experiences of sjorgen with neuropathy!and what things helped

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2 replies
Mentor
Becky, Volunteer Mentor | @becsbuddy | Jun 21, 2023
In reply to @abhishek80 "Please share experiences of sjorgen with neuropathy!and what things helped" + (show)
@abhishek80

Please share experiences of sjorgen with neuropathy!and what things helped

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@abhishek80 this discussion may be of help:
https://connect.mayoclinic.org/discussion/autoimmune-illness-and-small-fiber-neuropathy/
Read through the discussion and see whaat you might learn.
You’ve asked many questions about autoimmune diseases, do you have one? Which one, may I ask?

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