Small Fiber Neuropathy and Epstein-Barr Virus

Hello @giulia76, Welcome to Connect. I have idiopathic small fiber peripheral neuropathy and have not had mono or other herpes viruses but hopefully members with experience will join the discussion and share their experience. I did find this older article supporting your thoughts.

"Can EBV cause small fiber neuropathy?
The neurologic examination and ancillary studies were consistent with a dysautonomic small fiber neuropathy. The cerebrospinal fluid (CSF) contained both Epstein-Barr virus (EBV) DNA and antibody to EBV. This is the first report of an acute autonomic neuropathy with documented EBV infection in CSF."
-- Epstein-Barr virus--associated acute autonomic neuropathy: https://pubmed.ncbi.nlm.nih.gov/8797536/

Have you done any research on a connection between small fiber neuropathy and EBV, mono or other viruses?

Hello John, Thank you for your prompt reply and for your welcome to the group. I hope to find some solace here while sharing my experience with others who can relate. It is very lonely out there. I have just recently started to investigate this further as a client of mine who is now a friend told me she has post-herpetic neuralgia caused by the herpes viruses. She has small fiber neuropathy also and we share the same symptoms. She was diagnosed by an infectious disease specialist and is now going to a pain clinic. Thank you for sharing the article. I will add it to my pile... and I hope to hear from others as well.

I experience peripheral neuropathy that I believe is caused by one or more herpes viruses (most likely HSV2 or VZ). I was hospitalized with viral meningitis at age 18 (almost 40 years ago) and that's where my problems began. Over my lifetime I've had recurrences of severe symptoms over a lifetime (headache, malaise, fatigue bad enough that I need to take time off of work), usually once or twice a year. Approximately 20 years ago, the peripheral neuropathy started with a burning sensation in my feet. It has become worse in recent years (due to age?) where it becomes "systemic" and my limbs become weak and I can feel it in my head. I am having trouble getting a diagnosis that I could use if I become unable to work (I am currently experiencing the longest flare up I've ever had - almost two months). I believe I need to see a neurologist who specializes in viral-based neuropathy. I take a prophylactic antiviral (Valtrex) and I believe things would be much worse if that were not the case. Any thoughts or suggestions would be appreciated.

Hello @sjg67, Welcome to Connect. I'm not sure how helpful these references are but they are on the topic of viral based neuropathies.

--- Peripheral Neuropathy Evaluations of Patients With Prolonged Long COVID: https://nn.neurology.org/content/9/3/e1146
--- Peripheral Nervous System Manifestations of Infectious Diseases: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4212417/

Have you thought about seeking help or treatment at a teaching hospital or major health facility?

I had EBV (Mono) at 19 also. I am 61 now. I truly believe EBV was/is a contributing factor to my SFN. it really went into overdrive about a year after I had Shingles. I was originally diagnosed with Fibromyalgia In 2004 and I now think it was actually SFN. Good luck with your Doctors. I pray they actually listen to you.

Hi @mamalernan, Welcome to Connect. When it comes to autoimmune conditions it does seem like one of those when it rains, it pours moments in life. I so agree that it's important to have doctors that listen to you and work with you to find a treatment that helps. I've found it's equally as important for us as patients to be our own advocates and better communicate our questions and concerns with our doctors. One thing that has helped me is to write down questions that I want to discuss with the doctor before the appointment and take them with me so I don't forget in the heat of the moment.

Have you found anything that helps you communicate better with your doctors?

I have small fiber. Neuropathy. My balance is starting to be off, pains in my head, weakness , harder to swollen amd small sharp pain here and there. My doctyydays no cure and she can do nothing for me. I’m only 65. Can anyone help me????

Hi @kfrenc04, It's been awhile since your last post. It sounds like you haven't found anything that has helped you since your previous post last year and that must be terribly frustrating and discouraging. You mentioned in another discussion you were trying to find out if there was special diet that may help with small fiber neuropathy. I did respond to your post but I'm not sure you saw it so I will share a link to my earlier reply here - https://connect.mayoclinic.org/comment/677558/.

Although there is no specific cure for neuropathy, there are a lot of different things we can do for ourselves to make living with neuropathy a little easier for us. The Foundation for Peripheral Neuropathy has a lot of information and resources here that you might find helpful - https://www.foundationforpn.org/living-well/.

I recently had an appointment with a physical therapist who showed me some exercises that would hopefully help me improve my balance. Have you thought about talking with a physical therapist on ways you can help improve your balance to prevent falls?

I have always pleaded with neurologists and PCP, but they just ignore. I am sure I may also have some infections (EBV, Herpes or other) but never go tested. Only test they did was HIV, which was negative.

Please let us know if and when you see a viral-based expert neurologist, and the outcome. Thanks.