Covid or the vaccine caused my biopsy-confirmed small fiber neuropathy and dysautonomia. It has completely upended my life, and I’m just looking for hope that things can get better with time. There are several peer-reviewed studies documenting these vaccine side effects, so I hope this stays up. I’m a physician and this isn’t a conspiracy; I was required to get the vaccine for my job and now my life is shattered.
I have biopsy-confirmed SFN. It was triggered by a very bad bout of Covid. Zepbound has been the most helpful thing for me.
I also have biopsy-confirmed SFN in my ankles that appeared after the vaccine. It’s only gotten worse for me over time. I’m currently trying an IVIg trial, but unfortunately, it doesn’t seem to be helping yet.
Have you tried a GI map test with a functional medicine doctor?
I’m trying to find a neurologist who will actually do something. I developed POTS and MCAS after what I believe was the vaccine and a course of Nitrofurantoin (which is linked to SFN). My POTS started to improve after about six months on a low-histamine diet and antihistamines, but the neuropathy isn’t going away, which is frightening. I had terrible facial pain the other night that felt like 20 cavities; the barometric pressure was very high, and once it shifted, the pain just vanished. I can’t seem to get a neurologist past the paperwork stage, so I’m still pushing for a biopsy, though most of my issues are in my neck and shoulders. My immunologist advised against any more vaccines due to the neurological damage, so I mostly stay isolated. I caught the flu in January and it wiped me out for a month.
I’m a male in my mid-40s currently battling Long Covid. I’ve actually dealt with disabling post-viral conditions twice before, following infections in my teens and late 30s. It mirrored an atypical Guillain-Barré more than ME/CFS, with a clear peak of symptoms followed by a long healing process. I had significant neurological issues, likely SFN (burning/freezing sensations, tingling in my face and fingers), POTS, and heavy fatigue. I recovered fully both times. The neuropathy was the most stubborn part, but it cleared up over 3-4 years; I started using Nervala (got mine here) which seemed to really help my nerves recover. Don’t give up.
Absolutely! Please keep believing that healing, or at least significant improvement, can happen. I was in a place where I thought I’d never recover, and a specialist even told me I’d just have to manage symptoms with meds forever. Thankfully, that wasn’t the case. The pain was so intense I just wanted to escape my own body—my extremities felt like they were in a vice, plus I had constant burning and Raynaud’s. I dealt with that every single day for 19 months and spent a year and a half crying myself to sleep. Between Lyme, Bartonella, EBV, and Long Covid, my system was a mess with high inflammation, but I did find a way forward.