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.

I never take shots(flu, Covid, etc.)
I read that is wise not to ingest any sugar, salt or caffeine. I'm glad that I quit drinking coffee many yrs ago.
Unfortunately, before I found this out: I ordered a 12pk of Dr Pepper online from Walmart with a Halloween pkg of tiny Twix bars and a Halloween pkg of tiny Reeses cups.
I will give the drinks to my caregiver, since she likes them.
I haven't had any sugar or caffeine since I stopped being able to shop. I have a very kind friend at my church who buys the groceries for me. He charges them. I then reimburse him.
I am SO blessed.

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@loribmt

Hi @dinawashere Welcome to Mayo Connect. The goal of this forum is to be a kinder, gentler place than most of the online support group formats. Occasionally discussions get a little heated and we strive to bring that back under the guidelines of respect and civility. So I hope that you’ll feel welcome and find the support you need here.

You may be right about your Covid booster or any vaccine actually, allowing for a flare up of some pre-existing conditions. A few years ago I had a serious spinal cord inflammation not related to Covid or the vaccine. With treatment and therapy my spinal cord healed and back to normal.
About two weeks after the first vaccination I was alarmed one morning when I woke up with some of the same initial symptoms of my demyelination of my spinal cord incident a few years before. So I quickly called my bone marrow transplant team at Mayo to let them know. My doctor scheduled an MRI and my neurologist confirmed that my spinal cord was ok. Pfhew. Speaking with the neurologist he did mention that the medical community was seeing evidence at that time (early 2020) that some patients with pre-existing neurological conditions such as neuropathy, Bells Palsy, Shingles, etc., were experiencing some minor symptoms of their disease which disappeared within 2 weeks to a month. My symptoms did go away within two weeks. When I get a Covid vaccination or flu shot…and recently an MMR vaccine, each time I get vague symptoms again but they go away.

Has your flare up gotten any better for you?

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Hi thanks for reaching out! Yes it did subside thank goodness!

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@as143

I have neuropathy caused by DADS which is a variant of CIDP. The symptoms began within 2 months of getting my first two Pfizer vaccines and progressed over the next year or so. I am convinced that is what caused all of this though it has not been confirmed. I went on to get the first booster before making the connection as my symptoms were somewhat mild at that point. It was after the booster that symptoms really took off and changed my life, forcing me into early retirement. I refuse to get any more Covid vaccines unless/until I am 109% guaranteed they did not cause my illness. Not only that I refuse any vaccine that is not absolutely imperative. This illness is hell!

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I woke up two days after I retired and I had full onset of pinpricks all over including my eyes. I went to the neurologist and had a bunch of tests. The skin biopsy showed I had small nerve fiber idiopathic. I had two Moderna vaccines in January and about 5 weeks later is when I woke up with the pinpricks. It was within the 6 week time frame for reactions to happen if it was going to that I had the pinpricks. I don’t know if that caused it. I asked the neurologist how many patients that he took care of that had this happen. His reply was none it’s rare. I will not know for sure if the vaccine caused it. I had 20 tubes of blood checking for many things which were negative. No one in my family has small nerve fiber. Because small nerve fiber can cause GI problems or heart problems has anyone gotten the GI problems or heart issues before being diagnosed with small nerve fiber?

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@dinawashere

Hi thanks for reaching out! Yes it did subside thank goodness!

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How long after getting the 2023 updated vaccine did it take for your SFN symptoms to subside? I am 5 days out without noticing my exacerbated symptoms improving.

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@danye1

How long after getting the 2023 updated vaccine did it take for your SFN symptoms to subside? I am 5 days out without noticing my exacerbated symptoms improving.

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I have symptoms everyday and flare ups that last a day or but this time it was seven days of relentless pain and burning. Still I’m not sure what happened. Was it both vaccines at the same time or was it something entirely different? I never had any issues with my vaccinations before. Hope you get relief soon!

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@danye1

How long after getting the 2023 updated vaccine did it take for your SFN symptoms to subside? I am 5 days out without noticing my exacerbated symptoms improving.

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It never went away. I find if you don't move your toes, it's not as bad.

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@dinawashere

I have symptoms everyday and flare ups that last a day or but this time it was seven days of relentless pain and burning. Still I’m not sure what happened. Was it both vaccines at the same time or was it something entirely different? I never had any issues with my vaccinations before. Hope you get relief soon!

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Same to you!
Same to you

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@dinawashere

Hi thanks for reaching out! Yes it did subside thank goodness!

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Lucky you!!!!

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I had my last booster for covid around the end of 2022, making 2 vaccines and 3 boosters. I developed Neuropathy several months later. Starting in my toes and feeling like there was paper between my toes when I curled them under. It seems to have spread along my feet almost to my heels and the area is numb. I am not sure if vaccines or not, but I dont think I will be having any more shots just in case. I am one of the lucky ones I guess because it is not painful. I do have arthritis all over and suffer with that, so thankful the Neuropathy is not painful. I have seen a Neurologist and I go on Oct 19 for them to do a Electromyography Test.. where they are going to stick needles in my muscles at rest and when contracting... not looking forward to that, but hopefully get some answers to some problems. I am 79 y

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So my husband received the 2nd dose of Moderna and the inside of his mouth on the left side went numb. It spread up into his nose and down to his chin. Lasted months, went away for about 8 weeks. Came back, went away, came back and stayed. He also had shock wave type feelings in his mouth. Doctors said not from vaccine. Spoke to a friend who is a naturopath, said his MIL had the same thing told her to take magnesium. So my husband tried it. 200 mg a day of Magnesium Bisglycinate. In about 10 days is started to subside. Gone completely now. Coincidence maybe, but worth a try.

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