1. < Neuropathy

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.

Moderator
Amanda Roe | @amandajro | Apr 30, 2021
In reply to @meenu "I had pain and tingling in my right arm due to peripheral neuropathy. since I had..." + (show)
@meenu

I had pain and tingling in my right arm due to peripheral neuropathy. since I had received the second shot, my arm pain is more intense. pain started to get worst about 3 days after I had my second shot.

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Hello @meenu and welcome to Mayo Clinic Connect. How long have you had PN and were you without the tingling/pain prior to your first vaccine? After the second vaccine, where is the pain presenting itself now?

REPLY
1 reply
solobeee1 | @solobeee1 | Apr 30, 2021
In reply to @amandajro "Hello @meenu and welcome to Mayo Clinic Connect. How long have you had PN and were..." + (show)
@amandajro

Hello @meenu and welcome to Mayo Clinic Connect. How long have you had PN and were you without the tingling/pain prior to your first vaccine? After the second vaccine, where is the pain presenting itself now?

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I'm back on-line - for some reason I stopped receiving messages from Connect for the past few days.
Just to remind you - I've had SFN since 2008 and I have good days and not so good days.
Glad to discuss.
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nance78 | @nance78 | May 1, 2021
In reply to @joeyd5641 "Hi. I have a history of nueropathy that was dormant the last few years. the pfizer..." + (show)
@joeyd5641

Hi. I have a history of nueropathy that was dormant the last few years. the pfizer vaccine brought it back the next day. it went away after a week from the first shot, but like an idiot i went for the 2nd shot and it came back even worse,11 days out and its constant burning and itching.

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Hi Joey.
I had my first shot 4 days ago, it brought pin and needles. I am worried of having the second dose. How do you feel now?

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1 reply
sandiaschild | @sandiaschild | May 1, 2021

I got my second dose of Moderna 2 days ago and am still in agony. I wish that I had not done it. After the first shot I felt bad for 3-4 days, but had no neuropathy symptoms... now my paws are on fire. The worst being my hands because I type/talk for a living while sitting. I have 2 autoimmune diseases and MCAS and haven't had neuropathy symptoms in 8 years... about a year and a half after they discovered the celiac disease and I stopped eaten gluten and certain other allergens... back then it was so bad, I needed OT and PT because my hands were so weak I could not sign my name or chop vegetables. I ended up with a bunch of adaptive equipment which made my life a little easier but didn't address the pain, which eventually faded as my gut healed and I gained weight. Now I feel like I've been set back 10 years. Typing this is extremely painful, but I want others to know what they could be in for. I had COVID-19 in December, and lost my sense of taste on the left side of my tongue but was not hospitalized, did I even need the second Moderna vaccine? Or the first? How come doctors cannot give more appropriate, tailored advice? Medical care in this country is embarrassingly bad compared to other first world countries.

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | May 1, 2021
In reply to @sandiaschild "I got my second dose of Moderna 2 days ago and am still in agony. I..." + (show)
@sandiaschild

I got my second dose of Moderna 2 days ago and am still in agony. I wish that I had not done it. After the first shot I felt bad for 3-4 days, but had no neuropathy symptoms... now my paws are on fire. The worst being my hands because I type/talk for a living while sitting. I have 2 autoimmune diseases and MCAS and haven't had neuropathy symptoms in 8 years... about a year and a half after they discovered the celiac disease and I stopped eaten gluten and certain other allergens... back then it was so bad, I needed OT and PT because my hands were so weak I could not sign my name or chop vegetables. I ended up with a bunch of adaptive equipment which made my life a little easier but didn't address the pain, which eventually faded as my gut healed and I gained weight. Now I feel like I've been set back 10 years. Typing this is extremely painful, but I want others to know what they could be in for. I had COVID-19 in December, and lost my sense of taste on the left side of my tongue but was not hospitalized, did I even need the second Moderna vaccine? Or the first? How come doctors cannot give more appropriate, tailored advice? Medical care in this country is embarrassingly bad compared to other first world countries.

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Hello @sandiaschild, Welcome to Mayo Clinic Connect. I'm sorry to hear of your adverse reactions to the Moderna vaccine. I know you are not alone. A lot of members have reported adverse side effects. Hoping it's only temporary. I suspect doctors can only give an educated guess based on the patients condition and the benefits of the vaccine vs the risks of getting COVID-19.

Have you reported the side effects using VAERS or V-Safe?
-- https://vaers.hhs.gov/
-- https://www.cdc.gov/coronavirus/2019-ncov/vaccines/safety/vsafe.html

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | May 1, 2021
In reply to @sandiaschild "I got my second dose of Moderna 2 days ago and am still in agony. I..." + (show)
@sandiaschild

I got my second dose of Moderna 2 days ago and am still in agony. I wish that I had not done it. After the first shot I felt bad for 3-4 days, but had no neuropathy symptoms... now my paws are on fire. The worst being my hands because I type/talk for a living while sitting. I have 2 autoimmune diseases and MCAS and haven't had neuropathy symptoms in 8 years... about a year and a half after they discovered the celiac disease and I stopped eaten gluten and certain other allergens... back then it was so bad, I needed OT and PT because my hands were so weak I could not sign my name or chop vegetables. I ended up with a bunch of adaptive equipment which made my life a little easier but didn't address the pain, which eventually faded as my gut healed and I gained weight. Now I feel like I've been set back 10 years. Typing this is extremely painful, but I want others to know what they could be in for. I had COVID-19 in December, and lost my sense of taste on the left side of my tongue but was not hospitalized, did I even need the second Moderna vaccine? Or the first? How come doctors cannot give more appropriate, tailored advice? Medical care in this country is embarrassingly bad compared to other first world countries.

Jump to this post

Please let us know how you are doing over the next few days. I think we will see over time that these flares are the immune system going into "overdrive" in reaction to the vaccines, and it will resolve on its own, or with medication. According to infectious disease docs, the vaccine and its side effects are still better than the Covid infection.

I reacted to both the quadravalent flu vaccine last fall and the Pfizer vaccine with inflammatory flares. The flare with the flu vaccine was far worse, and ended with needing steroid injections.
The effects of the Pfizer vaccine began in earnest after the second dose, peaked at 3 weeks, and have since faded to a background annoyance.

It is important to keep in mind that even though you are reading about a lot if flares here on Connect, that does not mean it is necessarily happening a lot - I looked through VAERS data earlier this week, and it appears that about 10,000 people (.01% of the 100,000,000 fully vaccinated) are reporting neuropathy symptoms after Covid vaccines - most were transient, "pins and needles" that subsided quickly.
Compare this to people with a serious Covid infection who get neuropathy. 33,000,000 people have gotten Covid in the US and 9% (3,000,000) have been sick enough to be hospitalized. Of those seriously ill, 28% have neuropathy symptoms after recovery (about 890,000.) If you have an underlying condition, your chance of being among the hospitalized group rises to anywhere from 25 - 40%, and your chance of serious complications or an ICU stay also rises.

So here is a comparison to think about - if you get Covid, your chances of developing or worsening neuropathy are probably 250 times greater than getting it from the vaccine. That doesn't even take into consideration all the other awful effects of Covid - pneumonia, blood clots, death...

So your decision to have the vaccine was probably a wise one, even though it seems hard to believe when you feel so bad.
Sue

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | May 1, 2021

@steeldove forwarded the following article to me. I thought this research information might offer some help to some of us who are trying to understand the research going into the different reactions seen by a small percentage of people who have received the COVID-19 vaccine. It's not much consolation for those adversely affected but may give us a better understanding of some of the side effects.

Association of Facial Paralysis With mRNA COVID-19 Vaccines - A Disproportionality Analysis Using the World Health Organization Pharmacovigilance Database: https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2779389

REPLY
1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | May 1, 2021
In reply to @johnbishop "@steeldove forwarded the following article to me. I thought this research information might offer some help..." + (show)
@johnbishop

@steeldove forwarded the following article to me. I thought this research information might offer some help to some of us who are trying to understand the research going into the different reactions seen by a small percentage of people who have received the COVID-19 vaccine. It's not much consolation for those adversely affected but may give us a better understanding of some of the side effects.

Association of Facial Paralysis With mRNA COVID-19 Vaccines - A Disproportionality Analysis Using the World Health Organization Pharmacovigilance Database: https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2779389

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Thanks John - I read part of this article on another site yesterday, they skipped the conclusion comparing total doses administered to total instances of facial paralysis, making it look like it was a relatively common side effect - I communicated my displeasure with the incomplete analysis to that person.

I agree it is little consolation to the people who get the reaction - I certainly wasn't happy to have to be injected in December to end my reaction to the flu vaccine that lingered from October. But I'm not sorry I got the shot - with my lungs, influenza turns to pneumonia every time.

And I'm not sorry I got the Covid vaccine even though my hands, arms and shoulders are not yet back to "normal" - at least my life is - being out, seeing friends, hugging grandkids...
Sue

REPLY
sandiaschild | @sandiaschild | May 1, 2021
In reply to @sueinmn "Please let us know how you are doing over the next few days. I think we..." + (show)
@sueinmn

Please let us know how you are doing over the next few days. I think we will see over time that these flares are the immune system going into "overdrive" in reaction to the vaccines, and it will resolve on its own, or with medication. According to infectious disease docs, the vaccine and its side effects are still better than the Covid infection.

I reacted to both the quadravalent flu vaccine last fall and the Pfizer vaccine with inflammatory flares. The flare with the flu vaccine was far worse, and ended with needing steroid injections.
The effects of the Pfizer vaccine began in earnest after the second dose, peaked at 3 weeks, and have since faded to a background annoyance.

It is important to keep in mind that even though you are reading about a lot if flares here on Connect, that does not mean it is necessarily happening a lot - I looked through VAERS data earlier this week, and it appears that about 10,000 people (.01% of the 100,000,000 fully vaccinated) are reporting neuropathy symptoms after Covid vaccines - most were transient, "pins and needles" that subsided quickly.
Compare this to people with a serious Covid infection who get neuropathy. 33,000,000 people have gotten Covid in the US and 9% (3,000,000) have been sick enough to be hospitalized. Of those seriously ill, 28% have neuropathy symptoms after recovery (about 890,000.) If you have an underlying condition, your chance of being among the hospitalized group rises to anywhere from 25 - 40%, and your chance of serious complications or an ICU stay also rises.

So here is a comparison to think about - if you get Covid, your chances of developing or worsening neuropathy are probably 250 times greater than getting it from the vaccine. That doesn't even take into consideration all the other awful effects of Covid - pneumonia, blood clots, death...

So your decision to have the vaccine was probably a wise one, even though it seems hard to believe when you feel so bad.
Sue

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Thanks for your reply, Sue. You perhaps did not notice in my post that I stated I have already had Covid. Though it resulted in some deficits in taste and a worsening of my hearing in one ear (which I've been struggling with for years), it didn't cause any neuropathy and I was not hospitalized. I would have liked to have been informed about how long my natural immunity from having had the virus would last prior to being vaccinated, perhaps unnecessarily.

REPLY
amy11 | @amy11 | May 1, 2021
In reply to @sueinmn "Please let us know how you are doing over the next few days. I think we..." + (show)
@sueinmn

Please let us know how you are doing over the next few days. I think we will see over time that these flares are the immune system going into "overdrive" in reaction to the vaccines, and it will resolve on its own, or with medication. According to infectious disease docs, the vaccine and its side effects are still better than the Covid infection.

I reacted to both the quadravalent flu vaccine last fall and the Pfizer vaccine with inflammatory flares. The flare with the flu vaccine was far worse, and ended with needing steroid injections.
The effects of the Pfizer vaccine began in earnest after the second dose, peaked at 3 weeks, and have since faded to a background annoyance.

It is important to keep in mind that even though you are reading about a lot if flares here on Connect, that does not mean it is necessarily happening a lot - I looked through VAERS data earlier this week, and it appears that about 10,000 people (.01% of the 100,000,000 fully vaccinated) are reporting neuropathy symptoms after Covid vaccines - most were transient, "pins and needles" that subsided quickly.
Compare this to people with a serious Covid infection who get neuropathy. 33,000,000 people have gotten Covid in the US and 9% (3,000,000) have been sick enough to be hospitalized. Of those seriously ill, 28% have neuropathy symptoms after recovery (about 890,000.) If you have an underlying condition, your chance of being among the hospitalized group rises to anywhere from 25 - 40%, and your chance of serious complications or an ICU stay also rises.

So here is a comparison to think about - if you get Covid, your chances of developing or worsening neuropathy are probably 250 times greater than getting it from the vaccine. That doesn't even take into consideration all the other awful effects of Covid - pneumonia, blood clots, death...

So your decision to have the vaccine was probably a wise one, even though it seems hard to believe when you feel so bad.
Sue

Jump to this post

I would think most if not all of the people on this particular site who are reporting adverse side effects from the vaccine have pre-existing conditions such as neuropathy or autoimmune conditions. It might be informative to know what the percentage is of these people who are reporting adverse neuropathy symptoms after the covid vaccine, not just the percentage of the entire population who has been vaccinated. I'm sure it is higher than .01%.

Also risk vs benefit, using numbers only, can get a bit complicated to assess. Not everyone who doesn't take a vaccine is going to automatically get covid.

Not bringing statistics into the mix, I do agree returning to a normal life would be a huge benefit. But there are risks for us with pre-existing conditions that have to be weighed.

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