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.

@jlander

I also have the same concerns, except I was diagnosed with erythromelalgia in 2018. It started in 2017, it then became dormant the fall of 2018, but surfaced again this past November 2020 and I have had flare since then. I have not resorted to medications other than aspirin, a topical cream and ice pack but may be looking into other medications after I give it another few months to see if it gets under control again. This still all new to me! I am 74. I have read a lot of comments on erythromelalgia and understand my pain and flare is not as bad as many people face but it is still there. I have wondered if anyone with neuropathy and/or erythromelalgia (specifically) has received the Covid vaccine and what has been your results. Is there a erythromelalgia area I should be posting to instead? I am new to this Mayo site. Thank you.

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I have just been diagnosed with this condition. Had pfizer vac in March but this condition began in November so I don't think there is any connection.

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I don't have neuropathy, but I do have other autoimmune issues and a history of reacting to vaccines. My RN daughters, who both had Covid, were adamant that any reaction to the vaccine was far preferable to contracting the virus. I did have both doses in January/February and had typical fever/ache/sore arm/headache reaction as well as an arthritic flare. All resolved now, and with the more virulent strains out, I am glad to be vaccinated.
One daughter works the Covid/vaccine Telemed line for a large metropolitan hospital/clinic group, and their infectious disease docs recommend the shot for nearly everyone, with extra monitoring in clinic for anyone with a history of reaction or other high risk conditions.
Sue

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@rjb

I have just been diagnosed with this condition. Had pfizer vac in March but this condition began in November so I don't think there is any connection.

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I had my 2nd Moderna shot a week and a half ago. First shot only gave me a very slight headache the second day. The 2nd Moderna shot made me sleepy after receiving it, and the next day, I was completely down with chills, weak, extreme body aches. My arm also was sore and I had about a 2" x 2" red mark which took a few days to go away. I slept something like 23 hours of 36 hours. Woke up the day after my bad day and felt great. Didn't seem to affect my EM, guess I was lucky.

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@chezpl69

Thanks. This is so frustrating, doctors don't understand, even the people at the pfizes had no answers. I'm going to give it a little more time before I try gabapentin. Good luck with your vaccination.

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I am very anxious but I have to do this. I will let you know how it goes.
I'm in pain enough & I sure hope I don't get worse.

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I have baseline peripheral neuropathy symptoms
I had Coved in April 2020and was vaccinate in February 2021
3 weeks later developed neurological symptoms looking like neuropathy and for 2 weeks autonomous system activation that lasted 2 weeks.
The neuropathy continues to get worse every day until today
Could that be related to the vaccine.
NB
I strongly believe in vaccine

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@hurannette

I have baseline peripheral neuropathy symptoms
I had Coved in April 2020and was vaccinate in February 2021
3 weeks later developed neurological symptoms looking like neuropathy and for 2 weeks autonomous system activation that lasted 2 weeks.
The neuropathy continues to get worse every day until today
Could that be related to the vaccine.
NB
I strongly believe in vaccine

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Hello @hurannette, Welcome to Connect. Could it be related to the vaccine is a good question but probably one nobody here can answer. I have small fiber PN and have had both Pfizer vaccines with minimum side effects. I did register with the CDC's V-safe program to report symptoms after getting the vaccine - https://www.cdc.gov/coronavirus/2019-ncov/vaccines/safety/vsafe.html.

Have you thought about sharing your symptoms using V-safe? It's really easy to do on your smartphone.

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@hurannette

I have baseline peripheral neuropathy symptoms
I had Coved in April 2020and was vaccinate in February 2021
3 weeks later developed neurological symptoms looking like neuropathy and for 2 weeks autonomous system activation that lasted 2 weeks.
The neuropathy continues to get worse every day until today
Could that be related to the vaccine.
NB
I strongly believe in vaccine

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Hi. My symptoms also became very evident three weeks after the first shot of the pfizes vaccine and progressed every day. I had the first shot in February and didn't go for the second. I still have burning in my legs arms and now in one of my hands. I had issues with my face after chemotherapy years ago that had resolved, they came back after the vaccine.

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@chezpl69

Hi. My symptoms also became very evident three weeks after the first shot of the pfizes vaccine and progressed every day. I had the first shot in February and didn't go for the second. I still have burning in my legs arms and now in one of my hands. I had issues with my face after chemotherapy years ago that had resolved, they came back after the vaccine.

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I had my first vaccine end of January and get 1 day feeling like I had Coved again but no cough and I had no symptoms after the the second shot . The exacerbation of the neuropathy with burning paresthésie and increase problem walking stated mid March at first with GI problem and high blood pression then more peripheral neuropathy problem trembling spasm.. and problem articulate words and fine trembling in my face
Today I feel feel suddenly a lot better out of the fog and a lot less trembling
I hope neurologist could read about our symptoms and get interested

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Not really sure if this will help anyone but I am 35 yrs old, with peripheral and autonomic neuropathy as well as an autoimmune disorder. I also have two pages worth of allergies and an unable to take many other vaccines....but my doctor was so worried about what would happen to me if I contracted covid that she decided it was best for me to get the vaccine. In all the preparation for me to safely get the vaccine and have everything they thought they would need beyond my epi pen, no one told me (or didn't know) that the vaccine could cause a flare up in me. The day after my first vaccine I started to feel really off...more that just tired. Two days later and I'm full blown neuropathy flare up, barely able to get out of me bed, crying anytime anything touches. I couldn't exactly feel a touch but it lit my nerve endings on fire. After a week my balance was gone and I had very little control over other bodily functions. It has been years since I have had a flare up even remotely close to this bad and now I have no control or hope of help. I spent almost 3 weeks like that. Just as I was starting to get a little better it was time for my second dose. I just had the dose about 12 hours ago and I'm already starting out worse than with the first. Fever, Chills, Headache, Nausea, Vomiting, Body aches, and my nerve endings have started firing making it feel like I'm constantly being stung, pricked, or zapped.
If I had the choice to do this over I would not get the vaccine. I already lived in somewhat of a bubble before covid and that's not changing for me. I only did this so my family wouldn't have to live in a bubble too because of me but what it's done to me has only put more strain on them and caused more damage to my body. There are more side effects that I have that can only be from the vaccine but I don't know how to prove it or make people believe me. My spine has somehow been affected which has limited my mobility. My husband and I are going to do what we can to not only get me help but also spread awareness.
If this only helps 1 person it was worth writing but I hope it helps so many more. Please be careful getting these vaccines if you have any form of neuropathy, autoimmune disorder, or any other health problems. The vaccines were not tested for us or on people like us for a reason.

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@lulu85

Not really sure if this will help anyone but I am 35 yrs old, with peripheral and autonomic neuropathy as well as an autoimmune disorder. I also have two pages worth of allergies and an unable to take many other vaccines....but my doctor was so worried about what would happen to me if I contracted covid that she decided it was best for me to get the vaccine. In all the preparation for me to safely get the vaccine and have everything they thought they would need beyond my epi pen, no one told me (or didn't know) that the vaccine could cause a flare up in me. The day after my first vaccine I started to feel really off...more that just tired. Two days later and I'm full blown neuropathy flare up, barely able to get out of me bed, crying anytime anything touches. I couldn't exactly feel a touch but it lit my nerve endings on fire. After a week my balance was gone and I had very little control over other bodily functions. It has been years since I have had a flare up even remotely close to this bad and now I have no control or hope of help. I spent almost 3 weeks like that. Just as I was starting to get a little better it was time for my second dose. I just had the dose about 12 hours ago and I'm already starting out worse than with the first. Fever, Chills, Headache, Nausea, Vomiting, Body aches, and my nerve endings have started firing making it feel like I'm constantly being stung, pricked, or zapped.
If I had the choice to do this over I would not get the vaccine. I already lived in somewhat of a bubble before covid and that's not changing for me. I only did this so my family wouldn't have to live in a bubble too because of me but what it's done to me has only put more strain on them and caused more damage to my body. There are more side effects that I have that can only be from the vaccine but I don't know how to prove it or make people believe me. My spine has somehow been affected which has limited my mobility. My husband and I are going to do what we can to not only get me help but also spread awareness.
If this only helps 1 person it was worth writing but I hope it helps so many more. Please be careful getting these vaccines if you have any form of neuropathy, autoimmune disorder, or any other health problems. The vaccines were not tested for us or on people like us for a reason.

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Hello @lulu85, Welcome to Mayo Clinic Connect. I'm really sorry to hear how bad the COVID vaccine side effects were for you. It had to be extremely difficult for you to get the second vaccine knowing how the first one affected you. I had both Pfizer vaccine shots with minimum side effects. Which vaccine did you get? Also did you report the side effects to the CDC?
https://www.youtube.com/watch?v=vpisaRmzX0U

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