COVID vaccines and neuropathy

After receiving the new bivalent COVID booster, did you definitely experience a significant worsening of your pre-existing SFN?

Hello @danye1. I notice you are interested in connecting with members who can share their experiences with the COVID booster with regard to SFN. For that reason, you will notice that I have moved your post into an existing discussion on Covid Vaccines and Neuropathy, which you can find here: https://connect.mayoclinic.org/discussion/covid-vaccines-and-neuropathy/

Have you had the bivalent COVID booster yourself or are you considering it?

I have had the flu shot and then the Moderna Omicron booster a few days later and have not noticed any significant worsening of my SFN. Its been about a week now.That being said, I think the 4th Pfizer booster is what triggered my SNF back in 1/2022.

I had a similar experience. I had my first two shots with no particular side effects, and was working a job on my feet on concrete several hours a day, so I attributed my burning feet and numbness in feet and then in hands to my work. After my booster shot (All Moderna) I was violently sick to my stomach after 10 hours, and my entire legs were reververating, numb, etc. I have hald off getting the recommended 2nd bivalent booster, although it has now been a year since my last one. My feet, legs to my knees and my hands and face are feeling hot, stiff, numb and sometimes electrical shock type feelings. My doctor believes it may be small fiber non-length dependent neuropathy. I want to protect myself against COVID but I am very apprehensive that the moderna may in fact have caused or contributed to my worsening symptoms.

Hi. I also am debating whether or not to get the 2nd booster, as it appears my SRSN either began or was exaserbated by the COVID 19 vaccines. I had moderna for 3 shots.
You mention that your symptoms may "flare" after a vaccine. That indicates that they also abate. Is that your experience? I am more willing to have the bivalent if it may not cause permanent damage. So far my symptoms have advanced on the whole, with the odd day of some relief, but not what I would call a flare. I am hopeful though!

Hi @ssibc, Welcome to Connect. My experience with getting the vaccines and the booster is it didn't make a difference either way for my neuropathy - didn't make it worse and didn't make it better. I'm not sure there have been any clinical studies to draw any conclusions. It's good to be hopeful!

Did you report your adverse side effects to Vaccine Adverse Event Reporting System?
-- https://vaers.hhs.gov/

I have SFN and also have developed terrible sweating. I have had heat intolerance off and on for some time, but I think this did become worse after vaccine. I also have fatigue (had it immediately after vaccine) and now have it more and more. Is there any data or articles about this side effect from the vaccine.

Those of us here who are not physicians really can't comment on this one, but this is a great question for your doctor.

That said, I had two Moderna shots (I will NOT get the booster). Soon after the Moderna shots, I quickly developed bilateral peripheral neuropathy to the point I could only walk using a walker. I have since progressed to a cane, but every single step feels like I am on fire from the inside out. It is excruciating.

I would not wish this on my worst enemy (not that I have any, but you know what I mean).

I am curious who diagnosed you with vaccine-induced neuropathy. My neurologist shrugged his shoulders when I mentioned the vaccines. He just said, "Hmmm, maybe...?" (shrug).

P.S. - I found your doctor's diagnosis encouraging. I wish I could get someone here to acknowledge it.

I’m so sorry to hear about the severity of your neuropathy. I also presented with bilateral neuropathy after my first Moderna booster. I was extremely worried about what was happening to me. I had the great fortune of finding a wonderful neurologist in Cleveland who had seen several patients with the same problem after vaccination. Hearing that made me feel less alone. She could only say that there was “high suspicion” of vaccine induced neuropathy. Obviously, it can’t be proven. She was open to the possibility especially after seeing a photo of my arm after my first shot. I had a rash on almost the whole upper part of my arm a week post shot. She prescribed Gabapentin to help with the discomfort and for me, it was effective. The other thing that she told me was that she thought that this type of neuropathy could possibly heal. Regeneration is very slow when it does happen. I am so thrilled to say that after 9 months, I am just now trying to completely stop the medication and am able to return to walking 3 miles a day and hiking. When this started, I could barely walk from the bedroom to the kitchen. Incredibly blessed and I hope this gives you and others in this situation some hopeful, positive thoughts. I wish you the best.