COVID vaccines and neuropathy

I hope everyone here who has had their neuropathy flared from the vaccine is reporting to vaers. I have reported to both vaers and Pfizer. After two months from the first shot of the vaccine the burning has just staring to decreased a little bit I’m hoping that it continues to do so.
The muscle pain though has increased.So far the blood test I took didn’t explain my burning( my doctor’s words) one important test still pending. Hope they can figure out what’s going on. Very worried

Good afternoon - while I am not happy that you are suffering at least I feel I have found a home. After being administered Gadavist contrast for an MRI I had extreme pain in my left leg for about 20 minutes - it was a 12 in a chart out of 1 to 10. It was breathtaking - it subsided but my feet started to act weird, tingling, hot and burning at times. Then I got the first Modern shot - and it got real bad - I started to go to my PCP but he was/is clueless and not interested other than suggesting Curcumin. Went to a dermatologist who thought it is EM - I then started to educate myself joined this forum and others on FB and then got the second Moderna shot - which made it so much worse - I spent days and nights crying out of pain. I cannot take Gabapenting, Cymbalta, Lyrica - I handle all medications very poorly with strong side effects. So I got some compounded creams that I experiment with - and it seems it gets more manageable. I think the pain after the Gadavist was nerve pain and triggered some Neuropathy in my feet and Moderna made it worse. I think I might have a form of Neuropathy and Erythromelalgia - anybody can relate to this story sad story? Any encouragement or your self help stories would be welcome.
Revi

Thanks Amanda. I am based in Canada so access to a neurologist is only via referral from a family doctor who I have seen. He agrees it is an adverse response to the Pfizer vaccine. They are delaying 3 months for second shots in Canada so I have time to see if the attack on my peripheral nerves is temporary or permanent though the burning hasn't improved in the 7 days since all hell broke loose. I hope that information on this side-effect goes beyond Mayo Clinic Connect because I think Pfizer itself should be made aware... though I quite understand why it wouldn't want these kinds of side-effects to become widely known...

I totally agree with you! Pfizer needs to be aware of the exacerbation of neuropathy with their vaccine! If booster shots become advisory in a year or two, I do not want to go through this again!

Hi. Did you have your MRI and vaccine close to each other?

I am a 59 year old female who has never had symptoms of neuropathy until about 3 days after receiving my first Pfizer vaccine, last December. I did go ahead with the the 2nd shot as scheduled, on the advice of 2 docs. I have had every neuro work up there is, with the exception of a LP, to try to figure out a reason for this sudden onset neuropathy (mostly lower extremity) but nothing makes sense except that it is vaccine related. I do have degenerative disc disease and recent MRI and EMG confirmed that I have radiculopathy (pinched nerves) at S1. It’s reasonable that some of my lower extremity symptoms could be caused by this, but not likely since they literally appeared overnight. My neurologist now hypothesizes the vaccine may have exacerbated the pinched nerves. All I know is that my life hasn’t been the same since I got the first shot. It is bearable and I’m able to do everything that I want and need to do, but I do live with the fear of things getting worse. I have searched the internet regularly for months and feel like I am starting to see more references to neuro problems after vaccine. I just felt this group might be a good place to document what I am going through. I have not yet reported this as an official vaccine reaction because I’ve had so many differing opinions, and many other reasons, but I do plan to.

Hello @lk61, Welcome to Mayo Clinic Connect, a welcoming online community where patients and caregivers share their experiences, find support and exchange information with others. Thank you for sharing your experience with Pfizer COVID vaccine. I have small fiber peripheral neuropathy and have had both Pfizer vaccines with only minor symptoms which others have reported (sore arm, fatigue on 2nd day of second vaccine). I'm sorry to hear that it appears to have caused an onset of neuropathy symptoms for you. There is another discussion which you may find helpful which discusses myofascial release therapy and has helped some people with neuropathy pain caused by compression of the nerves.

Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Have you shared your after vaccination symptoms with the CDC? -- https://www.cdc.gov/coronavirus/2019-ncov/vaccines/safety/vsafe.html

Hello @sbm and welcome to Mayo Clinic Connect. I see that @sueinmn has joined the conversation and shared her experience with the vaccine and flare. As @chezpl69 mentioned recently, you should report your reaction through VAERS to provide awareness.

I am sure you are nervous to get your 2nd shot so am wondering if you've made an attempt to reach out to your Neurologist for a consult on what he/she recommends?

In my case (35/M), my peripheral neuropathy STARTED with a Covid infection last July. I had only mild flu-like symptoms, but that first night it all of a sudden felt as if my body was short circuiting - sharp needle-like pricks and zaps all up and down my extremities, and ever since I've been dealing with various throbbing/aching, buzzing/fizzing, numbness and pain issues, made worse by activity (neurologist suspects small fiber neuropathy).

Now that the vaccine is here, I am very anxious that this "mock" version of the virus will cause the same type of response towards my nervous system that the actual virus did. I figured the J&J would be the best option, since one shot would theoretically be better than two, but now that's off the table. Reading multiple accounts of the neuropathy triggers caused by the vaccine is not at all encouraging.

The standard line by medical professionals seems to be that the effects of getting the virus would be worse than effects from the vaccine, but in my case, I've already experienced what the virus can do to my nervous system. It seems unlikely that any doctor is going to recommend skipping the vaccine, but it really feels like there should be more data on these vaccine effects before making that call for people who already have issues.

I also have peripheral neuropathy that increased after my 1st Moderna vaccine. I am due my second tomorrow and am really scared to get it! I have a lot of pain in my left foot and the feeling that I am constantly wearing socks on both feet. I have been with children in a classroom setting since August and have not been sick once with any illness this year. No social distancing with 5 year olds! They wear mask also except for lunch time. Have to make a decision and an on the fence!