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?

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kathrynt | @kathrynt | Oct 24, 2021
In reply to @amyd67 "I’m wondering if symptoms will improve as antibodies from vaccines wear off over time? How long..." + (show)
@amyd67

I’m wondering if symptoms will improve as antibodies from vaccines wear off over time? How long has it been since your shot? I’m coming up on 6 months and feel like my symptoms may be improving as antibodies slowly regulate? I’m not taking anything except occasional CBD lotion on my feet at night, when the burning seems to be worse.

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I received two doses of Pfizer vaccine and it was three weeks after my second dose that I suddenly developed neuropathy in both feet, worse in the left. I decided to get a booster from Johnson and Johnson yesterday. I had aches and a headache about eight hours after the booster and feel okay today. I will keep you all posted.

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Dave Hayward | @davehayward1 | Oct 25, 2021

I have CIDP. My issues started about 4-5 years ago and, to date, consist of numbness, coldness and mild burning sensation in my feet. I was inoculated on 2/20 and 3/20. In my case, I don't believe the progress of my issues has been affected by either the COVID vaccine or by the flu vaccines. It is my understanding that "live" vaccines, such that which is administered for rabies, may be problematic.

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this1is1tuff | @this1is1tuff | Oct 25, 2021

I started getting horrible pain in my low back/rear/leg almost 2 week after the 2nd Moderna shot - I'm going on 7 months and I'm not better. My GP referred me to PM doc to look at MRI - then I've seen neurosurgeon, orthosurgeon - I've had 2 epidurals - MRI isn't showing anything nor xrays. I've had bouts of low back/leg issues on both sides in the last 5 or 6 years - very brief bouts and NOTHING like this. This has just been horrid. Can't walk without a cane - pain can be just unbearable. Maybe it wasn't the vax but my gut says it was.

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1 reply
deanna2 | @deanna2 | Oct 26, 2021
In reply to @this1is1tuff "I started getting horrible pain in my low back/rear/leg almost 2 week after the 2nd Moderna..." + (show)
@this1is1tuff

I started getting horrible pain in my low back/rear/leg almost 2 week after the 2nd Moderna shot - I'm going on 7 months and I'm not better. My GP referred me to PM doc to look at MRI - then I've seen neurosurgeon, orthosurgeon - I've had 2 epidurals - MRI isn't showing anything nor xrays. I've had bouts of low back/leg issues on both sides in the last 5 or 6 years - very brief bouts and NOTHING like this. This has just been horrid. Can't walk without a cane - pain can be just unbearable. Maybe it wasn't the vax but my gut says it was.

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It's hard to know whether it's a case of cause and effect or just a coincidence. Mine got worse weeks BEFORE I had my vacs so I know they didn't cause the increase in my neuropathy. Hope you get the help you need.

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lexilulu | @lexilulu | Oct 26, 2021

I got Moderna. First shot I was fine. Second shot, my burning feet flared up horribly that afternoon & have not changed since. It’s been several months ago! I thought for sure it would be a temporary thing. So asked my regular physician if I should get the Booster, and he said no. I know I needed the vaccines, but am so upset by this.

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elizabethburgess | @elizabethburgess | Oct 29, 2021
In reply to @kathleen123 "I have (small fiber) non-length dependent neuropathy. I had my first Pfizer Covid-19 vaccination 2 1/2..." + (show)
@kathleen123

I have (small fiber) non-length dependent neuropathy. I had my first Pfizer Covid-19 vaccination 2 1/2 weeks ago. It exacerbated my neuropathy symptoms. I’m scheduled for my 2nd shot on Wednesday but I don’t know whether to get it since the 2nd shot is much more likely than the first to have significant adverse effects. I called Pfizer and they claim that Covid-19 vaccination is not related to any neurological side effects although I have read elsewhere it can exacerbate PN. My internist says there is just no data to know whether the 2nd shot is likely to make my symptoms worse.

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@kathleen123 I received the same vaccine and I have CIDP. My daily symptoms have definitely been exacerbated since I got the vaccine. How have you been since the 2nd shot or did you decide not to move forward with it?

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2 replies
kathleen123 | @kathleen123 | Oct 29, 2021
In reply to @elizabethburgess "@kathleen123 I received the same vaccine and I have CIDP. My daily symptoms have definitely been..." + (show)
@elizabethburgess

@kathleen123 I received the same vaccine and I have CIDP. My daily symptoms have definitely been exacerbated since I got the vaccine. How have you been since the 2nd shot or did you decide not to move forward with it?

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It didn’t get worse. In fact I this week got my booster.

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nerak8 | @nerak8 | Oct 30, 2021
In reply to @elizabethburgess "@kathleen123 I received the same vaccine and I have CIDP. My daily symptoms have definitely been..." + (show)
@elizabethburgess

@kathleen123 I received the same vaccine and I have CIDP. My daily symptoms have definitely been exacerbated since I got the vaccine. How have you been since the 2nd shot or did you decide not to move forward with it?

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Mine was so much worse after my second Pfizer shot. It took 3 months to get back to my normal level of pain. I was dreading getting the booster but decided to do the J &J about a week ago. So far so good.

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1 reply
evelyng | @evelyng | Oct 30, 2021

I have it also an I gets worst everyday. I received the vaccine with no problem.

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Mentor
John, Volunteer Mentor | @johnbishop | Oct 30, 2021

Hello nerak8 and @evelyng, Welcome to Connect. I see that you are both first time posters on Connect so thought since you both mentioned you have neuropathy you might also be interested in a few other discussion on Connect.

-- Living with Neuropathy - Welcome to the group: https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/
-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Do you mind sharing a little more about your neuropathy diagnosis and treatments that help?

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