Anyone had a problem with neuropathy after receiving the vaccine?

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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Hi Lisa--I am sorry for what you've been through. Yes, we seem to have different problems. But we both have the identical dilemma. Which vaccine did you get? I may get the J&J (even though it seems pointless since it is not as robust as the other mRNA ones) or Novavax when it becomes available. Novavax was suggested to me by a neurologist I wrote to. That's because it and J&J work differently from Pfizer and Moderna. On the good side, there seem to be medications to now help treat COVID if we do get it. We may not die. Honestly, I wish we had a neurologist on this site who could give definitive, medical advice. Volunteers, have you ever thought of getting some MAYO doctors to weigh in for us?

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Profile picture for lisa53 @lisa53

Thank you. I experienced a flare up in my small fiber neuropathy after the 2nd shot. I clicked on the note in this first article, which led me to an abstract in another article, which described my experience to a T. Anyway, thank you.

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It’s good to have affirmation of the impacts of vaccines. I hope it spawns more research and awareness among doctors. I’m fortunate my neurologist acknowledged my reaction. I know many have not had the support of their providers. I hope you find improvement in your SFN.

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Profile picture for frankie7 @frankie7

Hi Lisa--I am sorry for what you've been through. Yes, we seem to have different problems. But we both have the identical dilemma. Which vaccine did you get? I may get the J&J (even though it seems pointless since it is not as robust as the other mRNA ones) or Novavax when it becomes available. Novavax was suggested to me by a neurologist I wrote to. That's because it and J&J work differently from Pfizer and Moderna. On the good side, there seem to be medications to now help treat COVID if we do get it. We may not die. Honestly, I wish we had a neurologist on this site who could give definitive, medical advice. Volunteers, have you ever thought of getting some MAYO doctors to weigh in for us?

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It was the Moderna vaccine. I am sorry for what you are experiencing too.

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Profile picture for athenalee @athenalee

It’s good to have affirmation of the impacts of vaccines. I hope it spawns more research and awareness among doctors. I’m fortunate my neurologist acknowledged my reaction. I know many have not had the support of their providers. I hope you find improvement in your SFN.

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It was gone entirely before the vaccinations. I should note that they flared my symptoms but not all my symptoms. If you don't mind a metaphor. If my symptoms were like a band, it is like the shots flared up the band - but some of the band members sat quietly. But the shots brought a couple of new members along - ones I had never heard play before. They played dully compared to the old band. Then, some of them stopped entirely. Only the new band members are still playing, and even one of them is quiet now.
I am sorry, I am a creative, and this is how my mind works.
Imagine the horror my doctors must view my descriptions of my symptoms with. Sometimes, I just get stared at. 🙂

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Profile picture for athenalee @athenalee

It’s good to have affirmation of the impacts of vaccines. I hope it spawns more research and awareness among doctors. I’m fortunate my neurologist acknowledged my reaction. I know many have not had the support of their providers. I hope you find improvement in your SFN.

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Sorry to write you two replies but I wanted to add that all of my doctors believed me immediately about the flares - so that was good. As a person who struggled for years to get to a diagnosis, I am grateful for that. I can imagine many will not get the support of their providers.
I reported my symptoms to my immunologist, PCP, the CDC (I signed up for that after test survey), my pharmacist, and The Immune Deficiency Foundation. I felt it important to share my experience for that very reason - so many do get doubted.

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Profile picture for frankie7 @frankie7

Thank you for the link. It seems to validate my small fiber neuropathy as a result of the Pfizer vaccine. Is anyone getting advice from their neurologists/physicians about getting a booster? My neurologists say don't get it because I'll have a worse reaction. But I don't want to die of COVID. What advice are others getting from their doctors? Please relay. Thank you.

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My first two shots were Pfizer which increased my pain tremendously so I opted to get the J&J for my booster in October and I’ve been fine. I was so happy when they ok’d mixing vaccines.

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Profile picture for lisa53 @lisa53

Thank you. I experienced a flare up in my small fiber neuropathy after the 2nd shot. I clicked on the note in this first article, which led me to an abstract in another article, which described my experience to a T. Anyway, thank you.

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I read this entire article. From their comments above, I believe many of the posters did not.
The article does a service by researching other papers which report various neurological adverse reactions to all available vaccines. By a huge margin, the most common reaction was headache, many of which are described as simply tension headaches. The next most common reactions were GBS and VST, lower than headache by a factor of ten. The other reactions listed ranged from a handful to 1 or 2. A large cohort of those reporting adverse reactions were in nursing facilities and/or suffering from serious pre-existing conditions. Of note, since this is a forum about peripheral neuropathy, there were no reported cases of PN, so technically, this article does not apply to us.
The authors note that their paper may not include all neurological adverse reactions, This is likely because those unreported reactions were not serious ones.
The article does not prove or disprove that a vaccinated individual may develop PN, or whether vaccination can make a pre-existing case of PN worse, as some posters above have reported.
I too am a sufferer of PN. I have all 3 shots, with only a slightly sore arm to report. I understand the terrible frustration of not having an answer to the cause of the disease, nor an adequate treatment.
Unfortunately, the article being discussed does not provide us with this information.
Furthermore, from the zeal expressed by some posters when discovering this article ("at last", etc.) I sense that some of the posters take it as some form of enlightenment or knowledge which has been previously unavailable or hidden, perhaps as a conspiracy. This is simply not true.
All medications, including vaccines, have side effects, sometimes fatal ones. The covid vaccines are remarkably safe, although they too have side effects. In deciding whether or not to take them, we as patients should do a cost/benefit analysis. Do the benefits of taking the vaccine outweigh the costs? Since Covid can be a horrible disease, causing millions of deaths and serious longterm effects in those that survive, this is as close to a no-brainer as it gets. Moreover, the decision to not get the vaccine can imperil the health of contacts (like your child or grandma), and impede the development of herd immunity, which can negatively affect me and all the rest of us.
I am astounded and ashamed that so many in our country refuse to accept this. They look for needles ( pun intended) in haystacks to find reasons not to take a lifesaving medicine. Medical decisions should not be based on politics, unscientific rumors, or what one hears on talk radio, or well meaning forums such as this one.

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Profile picture for frankie7 @frankie7

Thank you for the link. It seems to validate my small fiber neuropathy as a result of the Pfizer vaccine. Is anyone getting advice from their neurologists/physicians about getting a booster? My neurologists say don't get it because I'll have a worse reaction. But I don't want to die of COVID. What advice are others getting from their doctors? Please relay. Thank you.

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My PC doc is not aware of any adverse effects of covid vacs to neuropathy.

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Profile picture for jeffrapp @jeffrapp

I read this entire article. From their comments above, I believe many of the posters did not.
The article does a service by researching other papers which report various neurological adverse reactions to all available vaccines. By a huge margin, the most common reaction was headache, many of which are described as simply tension headaches. The next most common reactions were GBS and VST, lower than headache by a factor of ten. The other reactions listed ranged from a handful to 1 or 2. A large cohort of those reporting adverse reactions were in nursing facilities and/or suffering from serious pre-existing conditions. Of note, since this is a forum about peripheral neuropathy, there were no reported cases of PN, so technically, this article does not apply to us.
The authors note that their paper may not include all neurological adverse reactions, This is likely because those unreported reactions were not serious ones.
The article does not prove or disprove that a vaccinated individual may develop PN, or whether vaccination can make a pre-existing case of PN worse, as some posters above have reported.
I too am a sufferer of PN. I have all 3 shots, with only a slightly sore arm to report. I understand the terrible frustration of not having an answer to the cause of the disease, nor an adequate treatment.
Unfortunately, the article being discussed does not provide us with this information.
Furthermore, from the zeal expressed by some posters when discovering this article ("at last", etc.) I sense that some of the posters take it as some form of enlightenment or knowledge which has been previously unavailable or hidden, perhaps as a conspiracy. This is simply not true.
All medications, including vaccines, have side effects, sometimes fatal ones. The covid vaccines are remarkably safe, although they too have side effects. In deciding whether or not to take them, we as patients should do a cost/benefit analysis. Do the benefits of taking the vaccine outweigh the costs? Since Covid can be a horrible disease, causing millions of deaths and serious longterm effects in those that survive, this is as close to a no-brainer as it gets. Moreover, the decision to not get the vaccine can imperil the health of contacts (like your child or grandma), and impede the development of herd immunity, which can negatively affect me and all the rest of us.
I am astounded and ashamed that so many in our country refuse to accept this. They look for needles ( pun intended) in haystacks to find reasons not to take a lifesaving medicine. Medical decisions should not be based on politics, unscientific rumors, or what one hears on talk radio, or well meaning forums such as this one.

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Well, having posted the link, I did read the full article and, while I agree it doesn’t focus entirely on PN, it does list some examples, including SFN, plus PN is certainly a neurological disorder.

I resent the implication that I’m an antivaxer making up the affect that I had from the vaccines. As a liver transplant patient, with three autoimmune diseases, I am a strong advocate for the vaccines. I got both shots, even though I had a reaction to the first. I believe you would find most people on this discussion have similar views.

I do a lot of medical research about my illnesses and take 25 pills a day just to survive. I don’t question the miracle of the vaccines, being brought back to life three times, the skills of my transplant surgeons, and all the other wonders of science.

All I want for myself and others who have developed PN or had their PN increase from the vaccines, is to get some recognition and help.

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Profile picture for athenalee @athenalee

Well, having posted the link, I did read the full article and, while I agree it doesn’t focus entirely on PN, it does list some examples, including SFN, plus PN is certainly a neurological disorder.

I resent the implication that I’m an antivaxer making up the affect that I had from the vaccines. As a liver transplant patient, with three autoimmune diseases, I am a strong advocate for the vaccines. I got both shots, even though I had a reaction to the first. I believe you would find most people on this discussion have similar views.

I do a lot of medical research about my illnesses and take 25 pills a day just to survive. I don’t question the miracle of the vaccines, being brought back to life three times, the skills of my transplant surgeons, and all the other wonders of science.

All I want for myself and others who have developed PN or had their PN increase from the vaccines, is to get some recognition and help.

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I did not intend to imply that you specifically were an anti-vaxxer, and I am truly sorry if my post upset you in any way. In fact, with your condition, you must be vigilant about any new treatment. I also did not mean to discount any symptoms that others may have developed after being vaccinated, or imply that they were imagined or not real.
As far as the article, it is true that PN was mentioned as a possible, and then only rare, adverse reaction to the vaccine. However, it is not logical to conclude from the article that PN is a possible adverse reaction simply because it is a neurologic disease.,
As we all know, there is a strong ant-vaccine sentiment among some elements in our country. Personally, I am wary of any comments that may support this point of view, as there is no scientific evidence to back it up, and it is causing great harm to those who refuse the vaccine, and others.
All of us on this forum have the same goal, that is, to relieve our suffering. In that, I'm sure we agree.

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