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 group.

@machak Welcome to Connect. I know it is frustrating to not have clear answers or a path to wellness when you have so many unexplained symptoms. I have at times lived with some diagnosis uncertainty myself. I look at it as a puzzle to be solved one piece at a time, and also I understand how easy it is for the journey to run aground when no one looks at the bigger picture of how one issue might influence another. Sometimes doctors see what they expect to see with their own biases. Sometimes we just have to keep asking questions of why something is. I don't have small fiber neuropathy, but I wanted to share with you an author who writes about how adverse experiences and their stressors earlier in life can influence autoimmune diseases later in life. She covers many aspects of recovery and has herself recovered from an autoimmune disease. She has several books and is a medical/science writer. Here is her website. https://donnajacksonnakazawa.com/

My experience with nerve issues are as a spine surgery patient and also having thoracic outlet syndrome which causes nerve compressions. TOS can cause half of my chest not to expand enough on inhalation which causes issues with trapped phlegm due to allergies and asthma and chest tightness can make my heart speed up a little bit. My physical therapist can relieve this with MFR (see later paragraph). I also have Hashimoto's Thyroiditis, an autoimmune condition, and evidence in my case points to old silver amalgam dental fillings causing problems with the thyroid. It's been many years since those fillings were replaced with safer materials, and my blood tests now show I am borderline for this, but after years of it, my thyroid is spent and I require thyroid medication. I did see dramatic improvement in levels of antibodies against my thyroid after removal of the old fillings.

Another discussion you may be interested in is about Myofascial Release which is a physical therapy for stretching fascia which gets the body moving again, and helps re-hydrate stuck tissues. It can help a lot of issues. It can help physical issues and help restore lymphatic circulation and electrical conductivity. If issues are caused by a physical compression that affects nerve function, MFR might be able to help. There is a provider search on the MFR website. The discussion has a lot of resources in the beginning pages. Here is our discussion. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

I hope there are some ideas here that might be useful. I also have gained a lot of knowledge and health being the patient of functional medicine doctors or environmental allergy doctors. The practice that began this field of medicine is the Environmental Health Center in Dallas and they sell volumes of their research for doctors. Here is the website. https://www.ehcd.com/ There is a provider search (Blue button at top right corner of website) for the American Academy of Environmental Medicine https://www.aaemonline.org/ I do like how functional and environmental medicine looks at the big picture.

If you find something that helps, could you please check back and share your experience? I wish you success in your health journey.

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Thanks Jennifer! I have actually been with connects since 2017 or 18 and started earning champion badges, but I took a long time off of most media after I retired. Glad to be back!

I appreciate the sources you shared, several are ones I have not looked through yet. I would be happy to update as things come up as well.

I wish you the best with your journey!

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@machak

Thanks Jennifer! I have actually been with connects since 2017 or 18 and started earning champion badges, but I took a long time off of most media after I retired. Glad to be back!

I appreciate the sources you shared, several are ones I have not looked through yet. I would be happy to update as things come up as well.

I wish you the best with your journey!

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@machak I'm glad you're back! You certainly do have a lot to add. I think I am coming up on my 3 year anniversary of joining Connect, so we both joined about the same time. I appreciate the detail and thoughtfulness of your post.

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I have systemic lupus that is active since my bout with Covid-19. Lupus was under control for 45 years until Covid hit in January 2020. My Covid is long haul. I still cannot smell anything, or taste some things I loved to eat. I have not been diagnosed with neuropathy but my feet are numb. I can feel with them and have no pain but when I take off my shoes the soles feel like I still have shoes on. When I first got lupus my feet became painfully arthritic and swolllen. It took several years to comfortably walk. At this time nothing hurts but my feet are swollen. I take care of them as best I can and see a reflexologist weekly. . I'm starting to use Arnica tablets to see if that heips,

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@bardhyl

I have systemic lupus that is active since my bout with Covid-19. Lupus was under control for 45 years until Covid hit in January 2020. My Covid is long haul. I still cannot smell anything, or taste some things I loved to eat. I have not been diagnosed with neuropathy but my feet are numb. I can feel with them and have no pain but when I take off my shoes the soles feel like I still have shoes on. When I first got lupus my feet became painfully arthritic and swolllen. It took several years to comfortably walk. At this time nothing hurts but my feet are swollen. I take care of them as best I can and see a reflexologist weekly. . I'm starting to use Arnica tablets to see if that heips,

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Hi @bardhyl, Welcome to Connect. I also have swelling in my legs and feet during the day but I think it's related to my lymphedema diagnosis and not my small fiber neuropathy. I do wear compression socks which I hate but it does keep the swelling under control. You mentioned your Lupus diagnosis was under control for 45 years before you had COVID. Here's some information you may already know but thought you might find it helpful – What Causes Lupus-Related Swelling And How Is It Treated?: https://lupus.net/symptoms/swelling

Do you think your feet swelling could be related to your Lupus?

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@bardhyl

I have systemic lupus that is active since my bout with Covid-19. Lupus was under control for 45 years until Covid hit in January 2020. My Covid is long haul. I still cannot smell anything, or taste some things I loved to eat. I have not been diagnosed with neuropathy but my feet are numb. I can feel with them and have no pain but when I take off my shoes the soles feel like I still have shoes on. When I first got lupus my feet became painfully arthritic and swolllen. It took several years to comfortably walk. At this time nothing hurts but my feet are swollen. I take care of them as best I can and see a reflexologist weekly. . I'm starting to use Arnica tablets to see if that heips,

Jump to this post

Hello @bardhyl Welcome to Connect. This is a group of patients and caregivers who share information and resources and tips to help each other thru their health journey. We’re not doctors though, so we cant diagnose or prescribe medications.
You might want to look around your area because some of the larger hospitals have started
Covid Long Haul programs.
Have you talked with your doctor about the swelling in your feet? What has he/she said?

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@bardhyl

I have systemic lupus that is active since my bout with Covid-19. Lupus was under control for 45 years until Covid hit in January 2020. My Covid is long haul. I still cannot smell anything, or taste some things I loved to eat. I have not been diagnosed with neuropathy but my feet are numb. I can feel with them and have no pain but when I take off my shoes the soles feel like I still have shoes on. When I first got lupus my feet became painfully arthritic and swolllen. It took several years to comfortably walk. At this time nothing hurts but my feet are swollen. I take care of them as best I can and see a reflexologist weekly. . I'm starting to use Arnica tablets to see if that heips,

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@bardhyl There are reports of dormant virus’ being reactivated by Covid. Epstein Barr for instance. Dr. Mobeen Syed has educational videos for doctors that earn continuing education units on YouTube. There is one specifically regarding the reactivation of Epstein-Barr virus. Perhaps this same process is the reason for your reactivated lupus. Dr. Syed participated in the development of the long haul protocol put together by the front line covid critical care alliance group of doctors. The protocol is called iRecover. That protocol and others can be found on the FLCCC website. I hope you find relief. You and others are in my thoughts. Take good care

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@johnbishop

Hi @bardhyl, Welcome to Connect. I also have swelling in my legs and feet during the day but I think it's related to my lymphedema diagnosis and not my small fiber neuropathy. I do wear compression socks which I hate but it does keep the swelling under control. You mentioned your Lupus diagnosis was under control for 45 years before you had COVID. Here's some information you may already know but thought you might find it helpful – What Causes Lupus-Related Swelling And How Is It Treated?: https://lupus.net/symptoms/swelling

Do you think your feet swelling could be related to your Lupus?

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Hi John, I'm sure its related to lupus. When I first was diagnosed and put on 70 grams prednisone my feet developed arthritis so painful I could not walk well and needed special clodhopper shoes with inserts. Therefore I take very good care of my feet. They are full of arthritis but don't hurt much if I massage them and change shoes often. I'm attacking the small amount of edema and swelling but drinking more water and eating a more balanced diet. A Covid problem is that I am seldom hungry and tend to skip meals.

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@becsbuddy

Hello @bardhyl Welcome to Connect. This is a group of patients and caregivers who share information and resources and tips to help each other thru their health journey. We’re not doctors though, so we cant diagnose or prescribe medications.
You might want to look around your area because some of the larger hospitals have started
Covid Long Haul programs.
Have you talked with your doctor about the swelling in your feet? What has he/she said?

Jump to this post

Hi, I saw my rheumotologist and nephrologist last week and told them about my feet. Neither checked them. The rheumotologist did order lupus specific blood tests for my next visit. (3 months)

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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

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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Good morning @jgraber and welcome to Mayo Connect. We’re a group of patients and patient’s families and caregivers. We try to help each other with information and resources and what we have learned from our own health journeys. Since we are not doctors, we cannot diagnose or prescribe medications.
And, yes, this can be a lonely condition. But know that everyone is here for you. You are not alone.
Here is a link to another discussion on small fiber neuropathy that may interest you.
https://connect.mayoclinic.org/comment/98171/
Has it been suggested that you see a rheumatologist?

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@becsbuddy

Good morning @jgraber and welcome to Mayo Connect. We’re a group of patients and patient’s families and caregivers. We try to help each other with information and resources and what we have learned from our own health journeys. Since we are not doctors, we cannot diagnose or prescribe medications.
And, yes, this can be a lonely condition. But know that everyone is here for you. You are not alone.
Here is a link to another discussion on small fiber neuropathy that may interest you.
https://connect.mayoclinic.org/comment/98171/
Has it been suggested that you see a rheumatologist?

Jump to this post

Thank you for your rapid reply!! I’ve been referred to a GI/liver specialist first and then to a rheumatologist. If I do not have an autoimmune disease then I will continue with the pain clinics recommendation for pain control. My Dr. said that small fiber neuropathy is very hard to treat. I will go to the SFN link you just sent me. I can’t thank you enough.

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