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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robin0613 | @robin0613 | Apr 17, 2021

My Covid/Neuropothy experience
I have brachial plexus Neuropothy due to radiation on my left side. It’s been getting worse since the effects started 15 yrs ago. I had my first Moderna on 1/18/21, on the 10th day after, my total replacement knee area started burning and could put any weight on it for 2 days. I had my 2nd on 2/14/21, 21 days later the same thing happened. I went to my surgeon to make sure nothing was wrong. There wasn’t, and we agreed it had to be something with the vaccine/Neuropothy. On 4/7/21, I woke up to shingles (diagnosed by GP), all over the area my Neuropothy originated left upper chest under arm). The rash is the little red dots I get, not the little welts I see on the pictures of shingles. 10 days post and I still feel the bee stings and have the rash. I took my 1st Shingles Shot 11/28/20, I was going to have second after finishing the Covid. My neuropathy kept acting up. PS: It took over10 yrs to get my diagnoses, I finally found a Neurologist that listened.

REPLY
depueman | @depueman | Apr 17, 2021
In reply to @athenalee "I’m curious to know how many people in this discussion, who believe their neuropathy symptoms increased..." + (show)
@athenalee

I’m curious to know how many people in this discussion, who believe their neuropathy symptoms increased or returned after receiving the vaccine, also have an autoimmune disease? Other than minor tremors and joint pain, which were previously undiagnosed, my symptoms only started a few months ago. As I’ve reported here, these symptoms did increase after the vaccine and now, along with tremors, both my legs and feet are numb, my feet and hands tingle often, and I have severe back, neck, feet, and joint pain. The neurologist believes my increased symptoms were caused by the autoimmune disease (Primary Biliary Cholangitis) I have and probably a related one, ancillary to PBC, I just tested positive for (Sjogren’s Syndrome). Both of these diseases can cause PN. He also said that my reaction to the vaccine is most likely due to my autoimmune disease.

I found this article on the subject interesting: https://www.forbes.com/sites/judystone/2021/02/17/covid-19-vaccines-and-autoimmune-disease/?sh=4e20c0514892

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

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3 replies
depueman | @depueman | Apr 17, 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?

Jump to this post

Never entered my mind....till now. My PN had been pretty dormant. After both Pfizer's shots, my PN could not be worse.

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1 reply
cosette1968 | @cosette1968 | Apr 17, 2021
In reply to @athenalee "I’m curious to know how many people in this discussion, who believe their neuropathy symptoms increased..." + (show)
@athenalee

I’m curious to know how many people in this discussion, who believe their neuropathy symptoms increased or returned after receiving the vaccine, also have an autoimmune disease? Other than minor tremors and joint pain, which were previously undiagnosed, my symptoms only started a few months ago. As I’ve reported here, these symptoms did increase after the vaccine and now, along with tremors, both my legs and feet are numb, my feet and hands tingle often, and I have severe back, neck, feet, and joint pain. The neurologist believes my increased symptoms were caused by the autoimmune disease (Primary Biliary Cholangitis) I have and probably a related one, ancillary to PBC, I just tested positive for (Sjogren’s Syndrome). Both of these diseases can cause PN. He also said that my reaction to the vaccine is most likely due to my autoimmune disease.

I found this article on the subject interesting: https://www.forbes.com/sites/judystone/2021/02/17/covid-19-vaccines-and-autoimmune-disease/?sh=4e20c0514892

Jump to this post

I have not been diagnosed with an autoimmune disease but I am not ruling it out. At one point, decades ago, I was told I had RA due to a blood test, then I was told I didn't. I also have a chronic form of leukemia ( not autoimmune i realize). I've had all sorts of "issues", some big, some small, through my 75 years. I wouldn't discount autoimmune disease as one of them.

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Apr 18, 2021
In reply to @depueman "Never entered my mind....till now. My PN had been pretty dormant. After both Pfizer's shots, my..." + (show)
@depueman

Never entered my mind....till now. My PN had been pretty dormant. After both Pfizer's shots, my PN could not be worse.

Jump to this post

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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1 reply
athenalee | @athenalee | Apr 18, 2021
In reply to @cosette1968 "I have not been diagnosed with an autoimmune disease but I am not ruling it out...." + (show)
@cosette1968

I have not been diagnosed with an autoimmune disease but I am not ruling it out. At one point, decades ago, I was told I had RA due to a blood test, then I was told I didn't. I also have a chronic form of leukemia ( not autoimmune i realize). I've had all sorts of "issues", some big, some small, through my 75 years. I wouldn't discount autoimmune disease as one of them.

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It’s astounding that there are so many autoimmune diseases out there, most happen to middle age women, and many relate to each other. Plus, symptoms often are ignored or attributed to something else. I was diagnosed with Raynaud Syndrome and my primary said to “wear gloves.” Had she correlated it with other symptoms I had, including numb and stiff feet (“high arches”), severe itching/dry skin (use lotion), and anemia (“take more iron”) and sent me for blood analysis, the second autoimmune disease I have, Primary Biliary Cholangitis, could have been diagnosed. Instead, by the time PBC was diagnosed, it had caused Stage 3 liver cirrhosis.

A neurologist I recently saw thought my neuropathy is probably due to PBC or a related autoimmune disease. The lab analysis he ordered seems to indicate I have Sjogren’s as well; which can be secondary to PBC and does cause neuropathy and other issues.

I think it’s way pass time that comprehensive blood work become the norm when diagnoses do not lead to a solution for the symptoms presented. And, if you’re not satisfied with your primary...insist on seeing a specialist!

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athenalee | @athenalee | Apr 18, 2021
In reply to @kathleen123 "When i had a similar reaction after my first Pfizer shot thE end of January, I..." + (show)
@kathleen123

When i had a similar reaction after my first Pfizer shot thE end of January, I called pfizer to ask whether I should get the second one, fearing the sx might get even worse. They told me at that time they had had NO reports of neurological side effects. I had read people online saying they had had such effects but apparently no one was reporting them. Probably, in part, because their docs were like yours, thinking it’s a coincidence. Maybe it is but how will they ever discover a relationship if no one reports these problems to the companies? I never got this reaction after the flu or shingles vaccines.

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I know a number of people on this discussion did fill out incident reports on the VAERS website.

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1 reply
athenalee | @athenalee | 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?

Jump to this post

I can only speak for myself. However, I do not believe that the escalation of my symptoms after each shot was just “my perception” or anecdotal. If you have a neurologist, you might consult with them. I’m thinking there is nothing that can be done at this point. I would hope research will be conducted to at least find out what triggers such a reaction, especially since we’re probably going to need booster shots.

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1 reply
milly93 | @milly93 | Apr 18, 2021
In reply to @athenalee "I can only speak for myself. However, I do not believe that the escalation of my..." + (show)
@athenalee

I can only speak for myself. However, I do not believe that the escalation of my symptoms after each shot was just “my perception” or anecdotal. If you have a neurologist, you might consult with them. I’m thinking there is nothing that can be done at this point. I would hope research will be conducted to at least find out what triggers such a reaction, especially since we’re probably going to need booster shots.

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I totally agree with you!! Not just my imagination!!

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Mentor
Sue, Volunteer Mentor | @sueinmn | Apr 18, 2021
In reply to @athenalee "I know a number of people on this discussion did fill out incident reports on the..." + (show)
@athenalee

I know a number of people on this discussion did fill out incident reports on the VAERS website.

Jump to this post

I agree. I do not have PN, but I do have autoimmune/inflammatory issues. The inflammation flared significantly after the Covid vaccine, but it also did after the quadravalent influenza vaccine. My primary agrees that the vaccines provoking an immune response aggravate inflammatory issues, but I would rather be sore and protected...
I also reported the response to VAERS.
Sue

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