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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@ebrinks

I developed small fiber neuropathy from the Pfizer vaccine (I believe and two of my doctors, including my neurologist, think it is likely); the temporal proximity to the shot (and no other predisposing conditions or known causes my neurologist tested me for) makes this highly likely. Two weeks after the second dose, I had sudden acute onset of burning in my ankles, which rapidly progressed to my arms, hands and face. Looking back, I recall having some minor side effects after the first dose (like occasional fatigue walking and difficulty standing, both symptoms of small fiber neuropathy). However, because they were mild, I did not attribute them to the vaccine so I proceeded with the second dose three weeks later.
Dr. Waheed, a neurologist at the Univ of Vermont medical school, published a letter to the editor of Muscle Nerve in April 2021 where he describes a clinical case of small fiber neuropathy most likely attributable to the vaccine. And my neurologist tells me that there is some "chatter" among neurologists who are seeing more patients with neuro side effects likely attributable to the vaccine. I self-reported to the VAERs system and recommend everyone do so. (The VAERs folks have reached out to my doctor/the ER room - I thought I had Guillen Barre at first and went there - and requested medical records, so they're on this). It's important to get this data into the system -- not to discredit the vaccine but to make it safer in the long run. It may take time to understand all the side effects.
It is three months since my small fiber neuropathy first emerged. It's no better but I continue to hope this will run its course, as some toxic neuropathies do. I found a cream that works very well for the burning in my feet and arms, and I am on Gabapentin with some relief of some symptoms. I can swim but otherwise can hardly walk or stand. It's hard to accept this because I was a very healthy and active person before this. Overall, however, it's clear that this vaccine is a lifesaver for the vast, vast majority of people. I hope all of you here who have experienced worsened symptoms after the vaccine will improve and overcome this.

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I believe, as do my doctors, that my SFN was caused by a flu shot 3 years ago. My symptoms have improved I think in part to due to my diet, exercise and supplements. They have not totally resolved but seemed to have possibly caused the onset of Sjögren’s symptoms. My symptoms flared after the 2nd Pfizer vaccine which i did report to Vaers but calmed down eventually leaving me with tinnitus in my left ear. I do not think I will choose to get a booster. i hope your symptoms improve in time and glad you have found something that helps you.

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@helennicola

I believe, as do my doctors, that my SFN was caused by a flu shot 3 years ago. My symptoms have improved I think in part to due to my diet, exercise and supplements. They have not totally resolved but seemed to have possibly caused the onset of Sjögren’s symptoms. My symptoms flared after the 2nd Pfizer vaccine which i did report to Vaers but calmed down eventually leaving me with tinnitus in my left ear. I do not think I will choose to get a booster. i hope your symptoms improve in time and glad you have found something that helps you.

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Thank you for telling us about this. For several months, we have been sharing with people that the onset of neuropathy after the Covid vaccines is not a new side effect. People susceptible to neuropathy (or in my case to a hyper-inflammatory reaction) have been experiencing these symptoms for years after vaccinations, as their immune systems go into overdrive in response to the vaccine.

As with all things Covid, stay tuned for further developments. I expect to see recommendations emerging over time as to which vaccines are safest for those with specific conditions. Even as I write this, research is going on to study all the reported reactions.

Sue

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@sueinmn

Thank you for telling us about this. For several months, we have been sharing with people that the onset of neuropathy after the Covid vaccines is not a new side effect. People susceptible to neuropathy (or in my case to a hyper-inflammatory reaction) have been experiencing these symptoms for years after vaccinations, as their immune systems go into overdrive in response to the vaccine.

As with all things Covid, stay tuned for further developments. I expect to see recommendations emerging over time as to which vaccines are safest for those with specific conditions. Even as I write this, research is going on to study all the reported reactions.

Sue

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Thanks Sue, interesting and good to know.

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I was diagnosed with peripheral neuropathy at the Mayo Clinic many years ago, since I work at home I decided to wait a while before getting the vaccine, hoping to see if the mayo Clinic or other reputable sources would report on how common it is for the vaccine to cause my condition or make it worse. I was also hoping that if this was true there would be info on which brand was most likely to do this. So far I've heard nothing and haven't seen anything on the Mayo website. Does anyone have any info on this? Thanks!

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@minnesotadave

I was diagnosed with peripheral neuropathy at the Mayo Clinic many years ago, since I work at home I decided to wait a while before getting the vaccine, hoping to see if the mayo Clinic or other reputable sources would report on how common it is for the vaccine to cause my condition or make it worse. I was also hoping that if this was true there would be info on which brand was most likely to do this. So far I've heard nothing and haven't seen anything on the Mayo website. Does anyone have any info on this? Thanks!

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I've had small fiber peripheral neuropathy for over 20 years and made a decision to get the vaccine due to my age and the risk factors of getting COVID. I've had both Pfizer vaccinations and fortunately only had the minor reported side effects. For me the risk of serious illness or possibly dying from COVID outweighs the risk of making my neuropathy worse. I can understand the concern when you have an autoimmune condition. You might find the following podcast helpful.

Mayo Clinic Q&A podcast: Rapid pace of COVID-19 vaccinations: https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-qa-podcast-rapid-pace-of-covid-19-vaccinations/

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@helennicola

I believe, as do my doctors, that my SFN was caused by a flu shot 3 years ago. My symptoms have improved I think in part to due to my diet, exercise and supplements. They have not totally resolved but seemed to have possibly caused the onset of Sjögren’s symptoms. My symptoms flared after the 2nd Pfizer vaccine which i did report to Vaers but calmed down eventually leaving me with tinnitus in my left ear. I do not think I will choose to get a booster. i hope your symptoms improve in time and glad you have found something that helps you.

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Same here … symptoms improved by not eating foods that cause inflammation and gluten .

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@johnbishop

I've had small fiber peripheral neuropathy for over 20 years and made a decision to get the vaccine due to my age and the risk factors of getting COVID. I've had both Pfizer vaccinations and fortunately only had the minor reported side effects. For me the risk of serious illness or possibly dying from COVID outweighs the risk of making my neuropathy worse. I can understand the concern when you have an autoimmune condition. You might find the following podcast helpful.

Mayo Clinic Q&A podcast: Rapid pace of COVID-19 vaccinations: https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-qa-podcast-rapid-pace-of-covid-19-vaccinations/

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Thanks, John!

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In reply to @minnesotadave "Thanks, John!" + (show)
@minnesotadave

Thanks, John!

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Do you feel that the Pfizer may be more safe for us than the others? I'm surprised that there aren't any studies out yet on this subject as I had hoped for.

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@minnesotadave

Do you feel that the Pfizer may be more safe for us than the others? I'm surprised that there aren't any studies out yet on this subject as I had hoped for.

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I really didn't have a choice of vaccines. Pfizer happened to be the one available when I was able to get the vaccine. I would have taken any of current ones given that I really wanted protection from getting COVID-19 as soon as it was available for me to get it. In retrospect, I think we have seen a number of people with adverse side effects from all of the available vaccines but it's a risk I would take again given the choice.

Mayo Clinic has some good information on Vaccine Guidance here: https://www.mayoclinic.org/coronavirus-covid-19.

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I have started having neuropathy pain about 3 weeks after receiving my second shot on 2/3/21 and it has not gone away. I am 51 years old and now take Gabapentin 300mg twice daily and has helped to relieve the pain but some days it is more painful. This is the first time I have started seeking more information to see if others had this side effect also.

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