COVID vaccines and neuropathy

Posted by cue @cue, Feb 15, 2021

I am 85 with small fiber neuropathy that is getting worse. My neurologist thought it would be a good idea for me to wait with the covid vaccine and not be first in line to see how it affected other people with neuropathy. Probably because it is a new technology. Has anyone had a problem with neuropathy after receiving the vaccine? If so, which vaccine?

Interested in more discussions like this? Go to the Neuropathy Support Group.

greenacres | @greenacres | Aug 16, 2021

In reply to @bmum30 "Hi! I feel like I’m in the same boat. I got the Pfizer vaccine 4 days..." + (show)

My husband felt better after 2 weeks from getting his second dose. He went back to his baseline pain.

tracykarran | @tracykarran | Aug 16, 2021

I am 65 years old and this past April had my second Moderna Covid vaccine. immediately after that vaccine I developed severe pain symptoms in the back of my neck and lower head. Saw a neurologist and was diagnosed with a occipital neuralgia. Never had these headaches or any symptoms like this in my life. I ended up getting a nerve block in May and things started to get a little better. Still feeling aches and pains in my joints and going to see a rheumatologist in October

Sue, Volunteer Mentor | @sueinmn | Aug 16, 2021

In reply to @greenacres "My husband felt better after 2 weeks from getting his second dose. He went back to..." + (show)

Always great to hear how things turn out. Thank you for sharing.
Sue

queenakc | @queenakc | Aug 16, 2021

About 15 years ago I received an experimental treatment consisting of injections in my spine to treat my Complex Regional Pain Syndrome. Since then, I have been in remission. I have heard of people with active CRPS having flare-ups after the vaccine (all versions in the US), and have been reading several comments in this thread about other neurological symptoms. I have had Covid-19 earlier in the pandemic and recovered and get tested regularly. What are the chances of me coming out of remission due to the vaccine effects mentioned? The treatment I received before was not a common treatment, and I am unsure I will be able to receive it again since it was a clinical trial. I am worried that I will accidentally make myself return to active CRPS from getting the vaccine, which is an extremely scary thought for me. Has anyone in remission from CRPS received any version of the shot? I would love to hear your experiences, or get any advice. I live in NYC and I am feeling very sad to be left out of all activities in my city, but I also would consider having my symptoms return to seriously alter my physical health.

jcc352 | @jcc352 | Aug 16, 2021

In reply to @nance78 "Hi. Sorry to hear that. I have the same but after 1 shot. May I ask..." + (show)

I am sorry to hear you are having a similar experience. He did a few pressure tests and hot/cold tests to determine it was small fiber neuropathy. He did offer to do an additional test to determine the extent of neuropathy. At this point I did not feel like that was necessary. If it continues or gets worse I may consider additional tests.

krn | @krn | Aug 17, 2021

My wife's doctor told her she had PN without any formal diagnosis. She has numbness with pins and needles in her feet. After her 2nd Pfizer shot her symptoms got much worse and she was in misery for about 3 months. After that it subsided back to what it was prior to the shots. She is glad she was vaccinated, but afraid of what a booster might do. We would be very interested in what the experience is of anyone who had a bad reaction to the initial two shots and gets a booster.

jay4422000 | @jay4422000 | Aug 17, 2021

Yes I contracted polyneuropathy from the covid vaccine

jay4422000 | @jay4422000 | Aug 17, 2021

In reply to @johnbishop "Hello @jlander, Welcome to Connect. I have small fiber peripheral neuropathy and just received my COVID..." + (show)

My symptoms did not arise till 1 week after the second shot, it gave me polyneuropathy

kzee64 | @kzee64 | Aug 17, 2021

Hello, I'm new. I was diagnosed with small fiber neuropathy and Autonomic Dysfunction in 2015. I'm 68 years old.
I received my first dose of Moderna 3/2021. I was fine that night. When I woke up in the morning I realized my neuropathy and autonomic issues were off the charts! I suffered terribly for three and a half days. I've never ever felt this bad. It took over 3 weeks before I was back to my normal where I was before I got my shot. I had "Covid arm", 8 days after my shot.
I emailed the hospital that I got my Moderna shot from. A doctor called me 3 days later. He said I had two options; One don't get the second dose, or two stay with someone if I did get the second shot. I've been watching the developments and understand the second Moderna dose side effects are usually worse. I did report my symptoms to VAERS.
I've held off on second dose until recently. Now with the Delta variant running rampant, in spite of the side effects I've decided to get a second dose. I plan to stay with a family member after I get my shot this week until I'm able to be back home by myself. Hoping for a good outcome, glad I will be fully vaccinated, and no matter what I will continue to wear a mask in public.

Amanda Roe | @amandajro | Aug 17, 2021

In reply to @queenakc "About 15 years ago I received an experimental treatment consisting of injections in my spine to..." + (show)

Hello @queenakc and welcome to Mayo Clinic Connect.

Member @barbbie may have additional information to share as a follow up to her post back in April that you are welcome to read here:
https://connect.mayoclinic.org/discussion/covid-vaccines-and-neuropathy/?pg=36#comment-596769
How is your immunity holding up since your COVID-19 infection and did you have any adverse reactions resulting from having contracted COVID?