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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ess77 - Elizabeth | @ess77 | May 3, 2021
In reply to @colleenyoung "Hi all, This is a friendly reminder of the Community Guidelines (https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/) and Terms of Use..." + (show)
@colleenyoung

Hi all,
This is a friendly reminder of the Community Guidelines (https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/) and Terms of Use (https://connect.mayoclinic.org/terms-of-use/).

In particular, I'd like to quote guidelines 1, 2, 3, and 6.
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Oops...sorry, Colleen, for using All Caps in my message prior to yours! Actually, I think in a couple of instances I meant to be shouting, in a good way, for emphasis, not at any person or group of people. Won't do it again, Not good electronic etiquette. Bless you for all you do for so many! elizabeth

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Amanda Roe | @amandajro | May 3, 2021
In reply to @lmill7 "To Revisl, I feel for you n all the rest. I use herbals n Xtra vitamin..." + (show)
@lmill7

To Revisl, I feel for you n all the rest. I use herbals n Xtra vitamin supplements to deal with th neuropathy. Mine is very severe but I follow neuropathy sites to get info
Evening primrose oil 1300 mg 3-4 / day, St. John’s wort 1-3 ea day , kava 700 mg 3 x / day. I also do some amino acids n high potency B complex. I also started looking at homeopathic add-ons because med changes sometimes don’t cover th pins n needles or some don’t cover th nerve pain itself. Voltaren gel n any numbing lotion /cream also helps.
I wish all of you luck because neuropathy is very underserved in our medical fields. My pain doctors are great but for me only very strong meds help n our gov. Has decided we don’t need them. It used to b we were judged on our own actions.

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Hello @lmill7 and welcome to Mayo Clinic Connect. I see that you are replying to @revisl to provide support/understanding with regard to neuropathy pain, which you know personally as well.

I am so glad to hear you have found good pain doctors. How did you arrive at your current Rx and supplement combination and how long have you been on your current regimen?

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jonathanc | @jonathanc | May 4, 2021

Getting back to the original topic, data from the UK (see link below) on immediate vaccine side-effects from a very large sample is quite interesting, even if it is based on self-reporting. I notice that exacerbated PN is not reported in the study which suggests that it is not a common reaction. However, that's scant comfort to those that do experience permanent negative effects and it would be a pity if it was therefore ignored by the medical community. I am personally interested in whether adverse PN reaction is limited to certain types of PN and/or certain vaccines. Is there something about mNRA vaccines that make a negative PN reaction more likely?
https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(21)00224-3/fulltext

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | May 4, 2021
In reply to @jonathanc "Getting back to the original topic, data from the UK (see link below) on immediate vaccine..." + (show)
@jonathanc

Getting back to the original topic, data from the UK (see link below) on immediate vaccine side-effects from a very large sample is quite interesting, even if it is based on self-reporting. I notice that exacerbated PN is not reported in the study which suggests that it is not a common reaction. However, that's scant comfort to those that do experience permanent negative effects and it would be a pity if it was therefore ignored by the medical community. I am personally interested in whether adverse PN reaction is limited to certain types of PN and/or certain vaccines. Is there something about mNRA vaccines that make a negative PN reaction more likely?
https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(21)00224-3/fulltext

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Thank you for the link. This is what I concluded by reviewing the VAERS data as well. More study is, of course needed. I will say that my initial hyper-inflammatory vaccine reactions were both to traditional, non-mRNA types, and that PN reactions have been reported in VAERS as far back as 2007.
Now we need to push either a researcher or one of the pharmas to take a deeper look to answer the questions about who is most affected and if there are ways to mitigate.
Sue

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jonathanc | @jonathanc | May 5, 2021

Agreed Sue. Interesting that there were 2000 cases of burning in the UK study which is my predominant aftereffect. Odd though that they classify it as an allergic reaction. I fear that only some media attention will galvanize a closer look...

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tracyt | @tracyt | May 5, 2021
In reply to @joeyd5641 "You're the first one we've come across that never had neuropathy and then got it from..." + (show)
@joeyd5641

You're the first one we've come across that never had neuropathy and then got it from the shot. This should be a concern to the cdc

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I never had neuropathy and developed after 1st covid vaccine (moderna). It has not gotten better and I’m going on 5 months. MDs I’ve seen said it must be from vaccine but haven’t seen it before, I have been told they have seen similar symptoms in post covid patients. I did not have covid (had nucleocapsid test to confirm). I did not get second vaccine. I have filed a report with VAERS

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1 reply
tracyt | @tracyt | May 5, 2021
In reply to @lk61 "I developed neuropathy for the first time in my life after my first Pfizer dose in..." + (show)
@lk61

I developed neuropathy for the first time in my life after my first Pfizer dose in Dec. Took subsequent dose in Jan. Almost 5 months later now, neuropathy still going strong. My body is completely changed.

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I had the same thing happen after moderna and it’s still not improving 5 months out. I’m worried its not going to resolve and MDs have no idea what to tell me as far as what to expect bc they haven’t seen it

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1 reply
lk61 | @lk61 | May 6, 2021
In reply to @tracyt "I had the same thing happen after moderna and it’s still not improving 5 months out...." + (show)
@tracyt

I had the same thing happen after moderna and it’s still not improving 5 months out. I’m worried its not going to resolve and MDs have no idea what to tell me as far as what to expect bc they haven’t seen it

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So very similar to my own case except I did take my 2nd Pfizer dose. I am encouraged by the fact that at least it doesn’t seem to be getting any worse. And I don’t have numbness or pain that is bad enough to affect my mobility or balance. Predominantly burning in my feet these days. I feel like we will hear more of it as time goes by. I’ll look forward to keeping up with your progress through this forum.

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Amanda Roe | @amandajro | May 6, 2021
In reply to @tracyt "I never had neuropathy and developed after 1st covid vaccine (moderna). It has not gotten better..." + (show)
@tracyt

I never had neuropathy and developed after 1st covid vaccine (moderna). It has not gotten better and I’m going on 5 months. MDs I’ve seen said it must be from vaccine but haven’t seen it before, I have been told they have seen similar symptoms in post covid patients. I did not have covid (had nucleocapsid test to confirm). I did not get second vaccine. I have filed a report with VAERS

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Hello @tracyt and welcome to Mayo Clinic Connect. Thank you for joining the conversation and sharing your experience following your vaccine. Filing a report with VAERS will provide helpful information. Did your doctor suggest that?

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1 reply
tracyt | @tracyt | May 6, 2021
In reply to @amandajro "Hello @tracyt and welcome to Mayo Clinic Connect. Thank you for joining the conversation and sharing..." + (show)
@amandajro

Hello @tracyt and welcome to Mayo Clinic Connect. Thank you for joining the conversation and sharing your experience following your vaccine. Filing a report with VAERS will provide helpful information. Did your doctor suggest that?

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I did file a report with VAERS early on and they called me a month or two later based on my vsafe answers but they only asked a couple questions and couldn’t give me any info regarding if there were other similar cases. My neuro filed a consult with CISA regarding my symptoms and whether to get second dose and the answer was very vague and basically said I need to discuss risk/benefits with my provider. In the end I didn’t get second dose bc the MDs (as well I) were afraid it might make my symptoms worse. It’s just very frustrating having these painful symptoms and the doctors I have seen don’t really know what to say other than it has to be from vaccine.

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