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.

milly93 | @milly93 | Apr 18, 2021
In reply to @depueman "Yikes. Hit me like a liightning bolt. Did my PN return with such a vengeance due..." + (show)
@depueman

Yikes. Hit me like a liightning bolt. Did my PN return with such a vengeance due to the vaccine?

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Me too-my neuropathy greatly increased after the vaccine!

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hurannette | @hurannette | Apr 19, 2021
In reply to @becsbuddy "Good morning all. How painfully awful that your PN should act up just when you’re doing..." + (show)
@becsbuddy

Good morning all. How painfully awful that your PN should act up just when you’re doing the right thing by getting a vaccine for Covid! I added the link for the Foundation for Peripheral Neuropathy. It has some good information that you might find helpful.
https://www.foundationforpn.org/2021/01/08/covid-19-vaccine-and-peripheral-neuropathy/
Has your neuropathy improved or gotten worse the past few days?

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One month after I had the second shot of Moderna I developed very unusual symptoms of probably autonomous system activation with GI symptoms, shaking inside, high blood pression lasting for 1-2 hours . At the same time my peripheral neuropathy get significantly worse with pin and needle extending to my thighs imbalance more pain
Not able to walk safely without a walker.
Any body experienced similar symptoms?

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3 replies
Amanda Roe | @amandajro | Apr 19, 2021
In reply to @hurannette "One month after I had the second shot of Moderna I developed very unusual symptoms of..." + (show)
@hurannette

One month after I had the second shot of Moderna I developed very unusual symptoms of probably autonomous system activation with GI symptoms, shaking inside, high blood pression lasting for 1-2 hours . At the same time my peripheral neuropathy get significantly worse with pin and needle extending to my thighs imbalance more pain
Not able to walk safely without a walker.
Any body experienced similar symptoms?

Jump to this post

Hello @hurannette. You will notice that I have removed your email address in order to protect you from potential spammers. You are welcome to share that in a private message with members if you so choose.

I am sorry to hear of your recent symptoms. You may be interested in this discussion in the GI group about internal shaking:

-GI Disorder and Internal Shaking:
https://connect.mayoclinic.org/discussion/gi-disorder-and-internal-shaking/
As for your increased PN and worsening pins and needles feeling, have you shared this update with your Neurologist? What are you doing to safely ambulate?

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jonathanc | @jonathanc | Apr 20, 2021

I have had PN for 5 years following a serious viral illness. The symptoms have been stable and pain managed with assistance from 150 of Lyrica per day. On 12 May I got my first shot of the Pfizer vaccine. All good for 4 days then I began to experience intense burning in feet and hands (just like 5 years ago) and the skin on my feet is peeling (just like 5 years ago). Almost a week later it is still getting worse despite tripling the lyrica dose. My immune system has overreacted to the vaccine and is clearly now attacking my peripheral nerves again. Regretting that I got the vaccine (since my risk of contracting covid is very low) and am reluctant to get the second dose. This could just be related to my form of PN BUT there needs to be more investigation and advice to people with PN on the risks of taking the vaccine.

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2 replies
milly93 | @milly93 | Apr 20, 2021
In reply to @jonathanc "I have had PN for 5 years following a serious viral illness. The symptoms have been..." + (show)
@jonathanc

I have had PN for 5 years following a serious viral illness. The symptoms have been stable and pain managed with assistance from 150 of Lyrica per day. On 12 May I got my first shot of the Pfizer vaccine. All good for 4 days then I began to experience intense burning in feet and hands (just like 5 years ago) and the skin on my feet is peeling (just like 5 years ago). Almost a week later it is still getting worse despite tripling the lyrica dose. My immune system has overreacted to the vaccine and is clearly now attacking my peripheral nerves again. Regretting that I got the vaccine (since my risk of contracting covid is very low) and am reluctant to get the second dose. This could just be related to my form of PN BUT there needs to be more investigation and advice to people with PN on the risks of taking the vaccine.

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So true! Almost exactly my experience!

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Amanda Roe | @amandajro | Apr 20, 2021
In reply to @jonathanc "I have had PN for 5 years following a serious viral illness. The symptoms have been..." + (show)
@jonathanc

I have had PN for 5 years following a serious viral illness. The symptoms have been stable and pain managed with assistance from 150 of Lyrica per day. On 12 May I got my first shot of the Pfizer vaccine. All good for 4 days then I began to experience intense burning in feet and hands (just like 5 years ago) and the skin on my feet is peeling (just like 5 years ago). Almost a week later it is still getting worse despite tripling the lyrica dose. My immune system has overreacted to the vaccine and is clearly now attacking my peripheral nerves again. Regretting that I got the vaccine (since my risk of contracting covid is very low) and am reluctant to get the second dose. This could just be related to my form of PN BUT there needs to be more investigation and advice to people with PN on the risks of taking the vaccine.

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@jonathanc thank you for sharing your story and welcome to Mayo Clinic Connect. There are other members in this thread who can relate to your experience such as @hurannette @milly93 @sueinmn and @depueman who have all recently shared in this discussion.

Also, @becsbuddy shared a link in her comment above that you also might find of interest. Here is the direct link to her comment: https://connect.mayoclinic.org/comment/595326/

Have you consulted with your neurologist since receiving the vaccine?

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1 reply
roadrunner73 | @roadrunner73 | Apr 20, 2021
In reply to @hurannette "One month after I had the second shot of Moderna I developed very unusual symptoms of..." + (show)
@hurannette

One month after I had the second shot of Moderna I developed very unusual symptoms of probably autonomous system activation with GI symptoms, shaking inside, high blood pression lasting for 1-2 hours . At the same time my peripheral neuropathy get significantly worse with pin and needle extending to my thighs imbalance more pain
Not able to walk safely without a walker.
Any body experienced similar symptoms?

Jump to this post

I received my second Moderna vaccine about two weeks ago. I have been in agony with sharp pain, numbness and difficulty walking. Had an appointment today and had difficulty driving, my feet are so painful. It has been two weeks and has not let up. Wondering if anyone tried a natural product. I am also extremely tired. I am 66 years old. Felt good before the vaccine.

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1 reply
thomason | @thomason | Apr 20, 2021
In reply to @roadrunner73 "I received my second Moderna vaccine about two weeks ago. I have been in agony with..." + (show)
@roadrunner73

I received my second Moderna vaccine about two weeks ago. I have been in agony with sharp pain, numbness and difficulty walking. Had an appointment today and had difficulty driving, my feet are so painful. It has been two weeks and has not let up. Wondering if anyone tried a natural product. I am also extremely tired. I am 66 years old. Felt good before the vaccine.

Jump to this post

Dear@roadrunner, Two months ago I tested positive for long-term Covid antibodies. In March 2021, I received both Pfizer vaccines. On April 5, I tested positive for Covid. I have now had Covid twice. My feet are also on fire, short of breath, fatigue. The first Covid was March 2020, with a virulent, rib-breaking, four-month-long cough, with SOB. This Covid is more sore-throat, severe SOB, and fatigue. My feet are also like yours, burning, tingling...I am praying you feel better! We are all in his together!

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1 reply
sbm | @sbm | Apr 21, 2021

I had a pretty bad case of COVID (although no hospitalization) a year ago. Diagnosed Small Fiber Neuropathy flared up big time while I was sick for 5 weeks. Had 1st Pfizer shot this past Sunday. 19 hours after 1st shot, felt like mac truck hit me from behind and ran over me - soon followed with 101 fever, severe body aches, severe fatigue, light headedness, and SFN burning flare - it is now 46 hours later- no fever, some body/joint aches, slight headache but significant SFN burning! Scared to get 2nd shot and scared that SFN will be permanently worse.

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3 replies
Mentor
Sue, Volunteer Mentor | @sueinmn | Apr 21, 2021
In reply to @sbm "I had a pretty bad case of COVID (although no hospitalization) a year ago. Diagnosed Small..." + (show)
@sbm

I had a pretty bad case of COVID (although no hospitalization) a year ago. Diagnosed Small Fiber Neuropathy flared up big time while I was sick for 5 weeks. Had 1st Pfizer shot this past Sunday. 19 hours after 1st shot, felt like mac truck hit me from behind and ran over me - soon followed with 101 fever, severe body aches, severe fatigue, light headedness, and SFN burning flare - it is now 46 hours later- no fever, some body/joint aches, slight headache but significant SFN burning! Scared to get 2nd shot and scared that SFN will be permanently worse.

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Hello, I'm sorry to hear that the vaccine has caused issues for you. I don't have neuropathy, but I did have a significant inflammatory flare from the vaccine (more so with the second dose.) It began to subside at 4 weeks, after a temporary med increase. Now, at two months, it is noticeable mainly when I get tired, so I will consult my primary when I see her in May. Considering that I longed to get back to my life and was considered high risk for severe Covid, I consider this a small price to pay.
Sue

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