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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@madison2023

I am a healthy 51 year old and suspect the same. All of my shots were Moderna until the last one which was Pfizer. I feel that my immune system is in overdrive. I got a booster 4/28/22, had Covid in mid June, and another booster 10/9/22 (plus the flu shot). I asked my PCP if I should get the bivalent booster in October sine I would be traveling and attending crowded events at my son's university. She said yes. In early November, my symptoms began with chest squeezes (everything checked out ok by cardiologist), and the day before Thanksgiving I got extreme cold sensations that spread down my neck into my arms. Since then I have had numerous symptoms on almost a daily basis to include cold sensations, sunburn feeling, pins and needles tingling, numbness, and aches from my neck down. Each day the symptoms can be different and in random areas of my body. Sometimes I also feel a heaviness throughout my body, which may be anxiety. I feel best when exercising or moving around. An MRI, tests for lupus, RA, lymes, and sjogrens were all negative. Thyroid and Vitamin D levels are fine. My B-12 was low, but after taking supplements has vastly improved. I obviously have some form of neuropathy. The low B-12 may have contributed, but this came on so suddenly that I feel something else is in play. My neurologist is moving so I need to move forward with a new one.

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Wow, you just described my life the last 5 months. Interesting you had low B-12 as did I only difference with me is I have the Vaccine in April 2021 with no issues but started getting the tingling around Sep 2022 shortly after a bout of COVID and when I went to doc discovered the low B-12...I too am experiencing some neuropathy in my feet which came out of nowhere
How are things now?

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I have varying symptoms daily from the neck down. They change throughout the day. I am still able to go about my normal routine, but the worry about progression is all-consuming. My symptoms are very uncomfortable but not necessarily painful. I have a desk job, but try to move about as much as I can. I force myself to get on the treadmill or walk briskly outdoors for 30-60 minutes 5-6 days per week. I have no loss of strength, which is good. I am not on any medication yet; just B-12, Vitamin D, and magnesium supplements. I tried venlafaxine and did not have a good experience. I am seeing a new neurologist at the end of March who specializes in neuropathy. If I get any new insight, I will share. Take good care and keep me posted.

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@madison2023

I am a healthy 51 year old and suspect the same. All of my shots were Moderna until the last one which was Pfizer. I feel that my immune system is in overdrive. I got a booster 4/28/22, had Covid in mid June, and another booster 10/9/22 (plus the flu shot). I asked my PCP if I should get the bivalent booster in October sine I would be traveling and attending crowded events at my son's university. She said yes. In early November, my symptoms began with chest squeezes (everything checked out ok by cardiologist), and the day before Thanksgiving I got extreme cold sensations that spread down my neck into my arms. Since then I have had numerous symptoms on almost a daily basis to include cold sensations, sunburn feeling, pins and needles tingling, numbness, and aches from my neck down. Each day the symptoms can be different and in random areas of my body. Sometimes I also feel a heaviness throughout my body, which may be anxiety. I feel best when exercising or moving around. An MRI, tests for lupus, RA, lymes, and sjogrens were all negative. Thyroid and Vitamin D levels are fine. My B-12 was low, but after taking supplements has vastly improved. I obviously have some form of neuropathy. The low B-12 may have contributed, but this came on so suddenly that I feel something else is in play. My neurologist is moving so I need to move forward with a new one.

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This sound similar to what happened to me 18 month ago. It has slowly gotten better (almost gone). I take 30mg zymbalta. I don’t dare to stop it for fear it will come back.

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@pitepalten

This sound similar to what happened to me 18 month ago. It has slowly gotten better (almost gone). I take 30mg zymbalta. I don’t dare to stop it for fear it will come back.

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I am so happy to hear that your symptoms are subsiding. I pray the same happens for me and others. Take good care.

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@madison2023

I have varying symptoms daily from the neck down. They change throughout the day. I am still able to go about my normal routine, but the worry about progression is all-consuming. My symptoms are very uncomfortable but not necessarily painful. I have a desk job, but try to move about as much as I can. I force myself to get on the treadmill or walk briskly outdoors for 30-60 minutes 5-6 days per week. I have no loss of strength, which is good. I am not on any medication yet; just B-12, Vitamin D, and magnesium supplements. I tried venlafaxine and did not have a good experience. I am seeing a new neurologist at the end of March who specializes in neuropathy. If I get any new insight, I will share. Take good care and keep me posted.

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I have has all the nerve conductivity and muscle tests with Nero and all are fine so he believes we have eliminated the bad scary things. But like you I have lots of odd symptoms daily that seem to eb and flow depending on day, the most annoying is the tingling everywhere some days and less others…it has decided to affect my cheeks with tingling and burning…I have to take gabapentin at bed time for RLS I believe…another annoying aspect to this…I continue with my PCP and neuro but they seem to be working to a slower pace than myself…would love some answers so I know what I am dealing with and get in a good treatment plan…take care and thanks for responding. It always helps to talk these things with people dealing with similar symptoms

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I agree. Best wishes to you and please keep me posted.

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@pitepalten

This sound similar to what happened to me 18 month ago. It has slowly gotten better (almost gone). I take 30mg zymbalta. I don’t dare to stop it for fear it will come back.

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Wow, 18 months ago? can you share what some of your symptoms were? was it nerve, muscle, pain tingling, or anything else? Do you have any neuropathy symptoms? I seem to be in the beginning of all being I was fine 6 months ago then this stupid stuff came on like gang busters

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@ccstahl

Wow, 18 months ago? can you share what some of your symptoms were? was it nerve, muscle, pain tingling, or anything else? Do you have any neuropathy symptoms? I seem to be in the beginning of all being I was fine 6 months ago then this stupid stuff came on like gang busters

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It was hard to explain. Like a sun burn almost everywhere. I could not sleep. I stood up most of the day. I had test done and no one could tell me what caused it. I had a dropped foot as well for about a month. That fixed itself too. I’m so happy it is almost gone after 1.5 years.

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@madison2023

I have varying symptoms daily from the neck down. They change throughout the day. I am still able to go about my normal routine, but the worry about progression is all-consuming. My symptoms are very uncomfortable but not necessarily painful. I have a desk job, but try to move about as much as I can. I force myself to get on the treadmill or walk briskly outdoors for 30-60 minutes 5-6 days per week. I have no loss of strength, which is good. I am not on any medication yet; just B-12, Vitamin D, and magnesium supplements. I tried venlafaxine and did not have a good experience. I am seeing a new neurologist at the end of March who specializes in neuropathy. If I get any new insight, I will share. Take good care and keep me posted.

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My Neuroligist told me if peripheral neuropathy starts mild it generally stays mild. If starts aggressively, it usually progresses rapidly. Have you heard that.

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@gbrodnan1945

My Neuroligist told me if peripheral neuropathy starts mild it generally stays mild. If starts aggressively, it usually progresses rapidly. Have you heard that.

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I have not, but will see a new neurologist at the end of the month and ask.

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