COVID vaccines and neuropathy

I had strange burning feeling on my thigh and upper left back....tingly, very sensitive, itchy. I thought it was shingles and took Valtrex....didn't help. This was after the Moderna shot in February. Also got Covid arm (Google that) and the strange feeling is on the side of the shot. Doctor thinks it is from arthritis of the spine.......but it is nowhere near my spine and is not like any other arthritis pain I have had. Not getting the booster. It is not real painful and I can live with it but just tired of that feeling and not really knowing the cause. I have had shingles in the past and it is the exact same feeling. Just the nerves and skin. Not muscular.

I developed neuropathy and joint inflammation after one shot of Pfizer seven months ago. I still have it. I did not get the second shot.

No. My autoimmune bloodwork came back negative. I have made another contact in our situation who has found a doctor in New York who is looking into some possible reasons for this. One is that we have underlying issues that the vaccine brings to the surface because the vaccine decreases your body’s ability to deal with it like it used to. It weakens the body’s ability to hold other things at bay. I have seen another doctor show bloodwork panels of his patient before, after first and after second dose. The cells used in our immune system were lower after each shot.

@silvern12 Welcome to AZ! 🙂 That's a good idea to get the antibody test. I've been debating on whether or not to get the booster also.

I have not been vaccinated yet as I had a severe case of covid one year ago and I still have immunities from that. My hematologist told me that anything over 80 is considered positive and they don’t require the people in his office to be vaccinated if they can prove they’re positive for antibodies. I have mine checked every 2-3 wks and I just had them done last thurs. my #s are now 141 but I’m still positive so I’m holding off. I have neuropathy and many people have had bad nerve reactions so I’m leery of that.

@banksnc49 Hi Nancy - wow, thank you for sharing. I wasn't diagnosed with SFN until after my first two COVID vaccines and don't think they made anything worse but I was also working with my primary doctor at the time on what medication would help the symptoms I did have (that I now know were SFN symptoms). So, I really couldn't differentiate what was SFN symptoms, side effects from trying meds, COVID vaccine, etc. Just didn't have that full awareness at the time. I have a message in with my neurologist now to see what his recommendation is on the booster.

Had my booster shot three days ago. None of my COVID vacs affected my neuropathy that I've had for years.

I sure hope everything goes well for you. I find neuropathy to be something that is very hard to deal with. I’m having foot surgery at the end of this month and I’m praying it won’t make this neuropathy worse.

I agree. It is difficult. What I’m struggling with at this point is still all the unknown. My neurologist has me going thru a bunch of different tests to see if he can find an underlying cause. As of now it appears my small fiber and autonomic neuropathy are “idiopathic”. It seems to impact everyone differently and there’s really no way of knowing what to expect, how to prepare and what/how to treat. The worst symptom I experience at this point is chronic widespread pain, especially at night. I also have dizziness and sensations of motion but my doctor doesn’t think that’s related to the neuropathy so he’s doing different tests for that. Good luck on your foot surgery. I hope it goes well and does not exacerbate any symptoms.

Hello @mrsgeorgiou, I’m sorry for your dilemma. The sharp pains in my legs have diminished, but everything else continues to get worse. For me, however, since I have autoimmune disease caused PN, the neurologist believes I had an autoimmune reaction to the vaccine, causing my PN to spike after the shots.

I know others in this discussion have had their symptoms reduce over time, while others have not. I think it’s a risk that only you can resolve based upon your circumstances. Perhaps a medical provider can assist you in helping to decide. Best wishes.