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?

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Hi All, I started this discussion and want to thank everyone for sharing their stories. I had the J&J vaccine three weeks ago and so far there has been no change in my neuropathy. Everyone is different and that may not be the experience for other people.

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@cue

Hi All, I started this discussion and want to thank everyone for sharing their stories. I had the J&J vaccine three weeks ago and so far there has been no change in my neuropathy. Everyone is different and that may not be the experience for other people.

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Hello, thank you for starting this discussion - it has helped me a lot personally - I never had problems with Neuropathy or Eryhtromelalgia and after my first shot started to feel something and after the second it has developed full blown. Went to my primary care who is not interested aka overwhelmed and and a dermatologist who stated it could be EM or Neuropathy. The pain and discomfort are constant and my life is completely changed. I am in month 3 now of this debacle and I know some of you had it even longer. Is there any hope this will get better or are we stuck with this now? My life from "before" looks like paradise and I pray that a little will come back. What are your remedies to this? I can see a Neurologist in July - the good ones are all busy - I am in Houston - maybe there is something in this group that is also from the Houston area and give me some suggestions on who to contact? Mine is mainly in the feet and I have no real answer on how to make the pain go away other than cooling them - I used to walk 3 miles a day - Now I can't even leave the house - how do you handle your daily life? Sorry about the long "rant" but I am looking for ideas. Best wishes to you all

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@chezpl69

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

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yes - MRI on 12/27 and vacceen1/17 and 2/13 - do you think that could be the problem?

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I did get my 2nd vaccine on Saturday. I have had fatigue, body aches, and headache. So far Neuro hasn't been a problem. Just hoping it stays on this path. I am in quarantine, coincidentally till May 7! One of my kindergarten students tested positive for COVID on Saturday. This affects 11 children and 2 teachers. I do still get paid but many parents are upset with the notification they received today I was told to let them know if I get any symptoms..

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@jonathanc

Since Dr GV has never heard of the mRNA vaccine exacerbating pre existing peripheral neuropathy I'd be pleased to share my experience to the contrary with him as I'm sure would many others on this thread..

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My doctor knew of no bad reactions to the MRNA vaccines among people who had PN. After reading about several people’s reactions, I was too afraid to go that route.

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I thought members of this discussion might find some interest in research related to the COVID vaccines and neuropathy.

— Information on COVID-19 and Neuropathy: https://neuropathycommons.org/information-covid-19-and-neuropathy
— Coronavirus and the Nervous System: https://www.ninds.nih.gov/Current-Research/Coronavirus-and-NINDS/nervous-system
— Peripheral Nervous System Manifestations Associated with COVID-19: https://link.springer.com/article/10.1007/s11910-021-01102-5
— Guillain-Barre After COVID-19 Vaccine: Case Report — Clinical trial participant recovered after IVIG treatment
https://www.medpagetoday.com/infectiousdisease/covid19vaccine/91969

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Hi all, I applaud those of you who are reporting adverse effects to VAERS. It is through these reports that evidence is gathered, researched empirically, and scientific knowledge advanced. Thank you. Researchers and medical professionals are listening to patient reported outcomes and anecdotal evidence. Discussion forums, like this one, provide a platform to post these experiences for further research. As with all things COVID, we are all learning about the virus, the infection, treatment, prevention and post-COVID infection syndrome on the fly.

To further answer your questions about neuropathy and the COVID-19 vaccine, I submitted your concerns to Dr. Gregory Poland, Mayo Clinic infectious diseases expert. Here his responses to these questions in the video below.

Q: 16:20 Is there a connection between peripheral neuropathy and COVID-19 vaccines? It’s nerve pain that people are experiencing in their hands, and feet, as well. Is there evidence that the vaccines worsen peripheral neuropathy?
Q: 18:29 Can COVID-19 cause neuropathy?

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I just want to post an encouraging update. Almost exactly one month after the post vaccine burning in my legs and feet began, it has resolved and my neuropathy returned to its barely noticeable state. I hope that many of you will also find your symptoms improving soon! I did report the increase in my neuropathy symptoms to VAERS and to Pfizer as--if we are advised to get yearly booster shots- I do not look forward to a month of burning leg pain every year!

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@milly93

I just want to post an encouraging update. Almost exactly one month after the post vaccine burning in my legs and feet began, it has resolved and my neuropathy returned to its barely noticeable state. I hope that many of you will also find your symptoms improving soon! I did report the increase in my neuropathy symptoms to VAERS and to Pfizer as--if we are advised to get yearly booster shots- I do not look forward to a month of burning leg pain every year!

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Thank you for the encouraging update. I had the same experience with inflammatory flares after the vaccine.
Knowing that it goes away should encourage people to get immunized. Perhaps we will have more answers and options by the time we need a booster.
Sue

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@sueinmn

Thank you for the encouraging update. I had the same experience with inflammatory flares after the vaccine.
Knowing that it goes away should encourage people to get immunized. Perhaps we will have more answers and options by the time we need a booster.
Sue

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It is wonderful to hear encouraging news about people whose side effects have gone away after a month or so but there are MANY people posting here whose worsening neuropathy side effects from the vaccine still have NOT gone away after 2 months, 3 months and even longer.

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