Anyone had a problem with neuropathy after receiving the vaccine?

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.

Profile picture for jeanmmurph @jeanmmurph

I reported to Moderna first. They started the initial serious adverse event file. I continued doing the VSafe check ins and I was very specific with my feedback. They ended up contacting me.

Jump to this post

Thank you for sharing the information about contacting Moderna directly. Your experience with their immediate response is very reassuring. I had the same experience with V-Safe, and found them very helpful.
Sue

REPLY
Profile picture for Sue, Volunteer Mentor @sueinmn

Here is a link for how to report the reaction directly to Pfizer: https://www.pfizer.com/products/patient-safety/adverse-event-reporting-
Be sure to have your vaccine card when you call, as they will have specific questions for you. Also, they may ask for your physician's name & number.
Sue

Jump to this post

Thank you so much!

REPLY
Profile picture for jeanmmurph @jeanmmurph

I reported to Moderna first. They started the initial serious adverse event file. I continued doing the VSafe check ins and I was very specific with my feedback. They ended up contacting me.

Jump to this post

Thank you!

REPLY
Profile picture for jeanmmurph @jeanmmurph

So sorry you are going through this! Have you been referred to a Neurologist? Has anyone ordered blood work to check for Neurological syndromes and diseases? Any skin biopsies? I would seriously ask your doctors for a detailed treatment plan. If they seem lost and unmotivated to seek the answers you need, start looking for a new doctor. Maybe consider a video consult with Mayo? The one good thing about COVID is that video consults became mainstream and access to world class doctors became available to anyone with access to a computer and internet.

Jump to this post

Thanks for reading and responding to my post. Doctors have refused to give me referrals. I will keep on trying

REPLY

Mayo Clinic has created a website dedicated to COVID-19 that is regularly updated as information and research evolves related to COVID-19 infection, COVID vaccine and treatment, and post-COVID recovery.

- COVID Vaccine FAQ https://www.mayoclinic.org/coronavirus-covid-19/vaccine

To report adverse events (side effects), see
- Vaccine Adverse Event Reporting System (VAERS) https://vaers.hhs.gov/

REPLY
Profile picture for mawagner13 @mawagner13

This happened to me too. I developed neuropathy 2 yrs ago after taking Levaquin. It improved after about a year and I was no longer on any medication for it. Other than occasional mild flares if I overexerted, it was a non-issue. I got the first Moderna shot Jan 5 and within 6 hrs my feet started to burn. Within 8 hrs it was nearly my entire body and it did not go away. I saw my PCP and said although neuropathy isn't an expected reaction to the vaccine there are too many unknowns to know. She wouldn't advise on the 2nd dose because there are too many unknowns. I ended up not getting the 2nd dose. Unfortunately I still have the neuropathy all over. I've searched my brain to find another variable to blame, but there just isn't one that I can see. I'm now back on gabapentin 3x a day. I did report this through the vaers system. I hope in time things calm and it's not permanent. Every individual is unique and rare doesn't mean impossible, which medical providers often forget. In no way do I want to sway anyone from the vaccine. We all have to choose based on our own health history, risks, etc. My family and friends who received it had no problems. But I did want to share my experience.

Jump to this post

I had the Pfeizer vaccine in March. Two weeks after my second Pfeizer vaccine I developed neuropathy in my feet and hands.
I had neuropathy 28 years ago in just my right hand but also had other symptoms the neurologist thought might be MS. All of my symptoms cleared after about a year.
My doctor believes it was the way my immune system responded to the vaccine and not necessarily a side effect of the vaccine,
He’s sending me for a second opinion. I hope a booster isn’t recommended

REPLY
Profile picture for jeanmmurph @jeanmmurph

So sorry you are going through this! Have you been referred to a Neurologist? Has anyone ordered blood work to check for Neurological syndromes and diseases? Any skin biopsies? I would seriously ask your doctors for a detailed treatment plan. If they seem lost and unmotivated to seek the answers you need, start looking for a new doctor. Maybe consider a video consult with Mayo? The one good thing about COVID is that video consults became mainstream and access to world class doctors became available to anyone with access to a computer and internet.

Jump to this post

I feel for much of your issues and am sorry. I too know of the paper cut sensations in fingers and other symptoms. For 3 years I have chased referrals and 6 neurologists. Mayo is now #7 but is the first time I have not been treated like a “nail” by a bunch of hammers. Praying the best for you

REPLY

Given your questions I have had no ill effects from my Pfizer moderna vaccines. In my opinion, for your doctor to recommend waiting is irresponsible. You are high risk and need protection. PS much of the replies regarding negative symptoms post vaccine are anecdotal, so bear no weight. Ignore them.

REPLY
Profile picture for jeanmmurph @jeanmmurph

All of my doctors have said they cannot rule out the vaccine and the timing and symptoms indicate the strong probability that this is an exaggerated response to the vaccine. They blame my previous COVID infection first and foremost as the impetus for what they believe is an exaggerated immune response that caused a series of concerning health problems... none of which I had before. For the purpose of an FDA drug study, that is all that is needed to create a serious adverse event case... the inability to definitively rule out the drug as the cause. No doctor has been able to rule it out and the problems are measurable thanks to labs and various tests they’ve ordered.

I do believe my PCP when he says that he believes that this is an inflammatory response. I want to believe him when he tells me that he believes this is a temporary state and that my body will find health and homeostasis again. Many days that is hard to believe, but I am taking a regimen of OTC meds that have histamine 1 and 2 receptors and it seems to be keeping my symptoms stable. I also agree with my Neurologist’s suspicion that my ANS is involved. After reading an article in the Atlantic on the way COVID impacts breathing and the vasovagel nerve, I have started deep breathing exercises. If nothing else, it feels good. But for some, evidence is mounting that these breathing exercises help stimulate the vasovagel nerve, which positively impacts the ANS and helps it reset. That “reset” helps to heal post-COVID neuropathy and muscle weakness. So the good news is that healing can and is happening, but the downside is that the healing process tends to be very, very slow. Hang in there. Reach out to your vaccine’s safety team and start that conversation.

Jump to this post

I also had COVID in December, so that makes me wonder as well. I should do the deep breathing just for stress relieve any way! I hope and pray this is temporary. Taking Celebrex seems to help my pain some, which would make sense if it's inflammatory. I can't wait for my testing to be done to have some answers. Thanks so much for your response.

REPLY
Profile picture for kimas @kimas

I also had COVID in December, so that makes me wonder as well. I should do the deep breathing just for stress relieve any way! I hope and pray this is temporary. Taking Celebrex seems to help my pain some, which would make sense if it's inflammatory. I can't wait for my testing to be done to have some answers. Thanks so much for your response.

Jump to this post

You’re welcome. Stay positive and proactive... sending you wishes for wellness. And yes, definitely try the deep breathing... 4 seconds in, hold for 4 more seconds and then exhale for 4 seconds. I do a set of ten twice a day. If nothing else, it feels good. Self care seems more important than ever.

REPLY
Please sign in or register to post a reply.