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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@suzanne2

I also have peripheral neuropathy that increased after my 1st Moderna vaccine. I am due my second tomorrow and am really scared to get it! I have a lot of pain in my left foot and the feeling that I am constantly wearing socks on both feet. I have been with children in a classroom setting since August and have not been sick once with any illness this year. No social distancing with 5 year olds! They wear mask also except for lunch time. Have to make a decision and an on the fence!

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I really understand your dilemma as it's mine as well though I am several weeks out from second shot. It's unbelievable to me that no-one thought to check whether the immune system might mistake peripheral nerves for the mRNA vaccine and launch an all-out attack. Obviously no-one with PN in the clinical trials. I suppose I'm wondering if Astra Zeneca or J & J which are not mRNA might not precipitate the same response.

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@jonathanc

I really understand your dilemma as it's mine as well though I am several weeks out from second shot. It's unbelievable to me that no-one thought to check whether the immune system might mistake peripheral nerves for the mRNA vaccine and launch an all-out attack. Obviously no-one with PN in the clinical trials. I suppose I'm wondering if Astra Zeneca or J & J which are not mRNA might not precipitate the same response.

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I have wondered the same thing about the J&J and AstraZeneca.

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Hi guys,
I am healthy 40 yr old female that starting getting burning sensation,pins and needles as well as cold sensation in both of my feet, hands and face all over it seems since I had my Covid vaccine. I have neurologist appointment coming up but am super scared. Please help any input and encouragement much appreciated.

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Hi,
I got j and j and have no underlying health conditions am 40 and I have seen to develop neuropathy where my feet are burning with terrible pins and needles. I hope it goes away. I have neurology apt scheduled.

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@jjmk

Hi guys,
I am healthy 40 yr old female that starting getting burning sensation,pins and needles as well as cold sensation in both of my feet, hands and face all over it seems since I had my Covid vaccine. I have neurologist appointment coming up but am super scared. Please help any input and encouragement much appreciated.

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Hi @jmk, welcome. As you have read in this discussion thread, several members have reported developing neuropathy potentially from a vaccine or from a COVID infection, or that either caused existing neuropathy to flare. For some it was temporary for others longer.

I brought many of the questions members were asking to two of Mayo Clinic’s experts in COVID and post COVID recovery: Dr. Van and Dr. Ganesh. The brief answer is that there is, as yet, that the vaccine can trigger neuropathy. But there is evidence that COVID infection can cause neuropathy or worsen existing neuropathy.

You can read their full response here:
https://connect.mayoclinic.org/comment/593849/
I’m glad that you have an appointment with neurology. And I can completely understand that you’re concerned and scared. To help prepare for your appointment, I might suggest keep a journal about the feelings you’re experiencing in your feet, hands and face. Make note of things like what time of day the sensations occur, is it burning or pins and needles or both? How long does it last? What seems to make it worse? Better? Etc. The more details you can provide, the better you can help your team find the cause and hopefully solutions.

How long ago did you have the vaccine?

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@colleenyoung

Hi @jmk, welcome. As you have read in this discussion thread, several members have reported developing neuropathy potentially from a vaccine or from a COVID infection, or that either caused existing neuropathy to flare. For some it was temporary for others longer.

I brought many of the questions members were asking to two of Mayo Clinic’s experts in COVID and post COVID recovery: Dr. Van and Dr. Ganesh. The brief answer is that there is, as yet, that the vaccine can trigger neuropathy. But there is evidence that COVID infection can cause neuropathy or worsen existing neuropathy.

You can read their full response here:
https://connect.mayoclinic.org/comment/593849/
I’m glad that you have an appointment with neurology. And I can completely understand that you’re concerned and scared. To help prepare for your appointment, I might suggest keep a journal about the feelings you’re experiencing in your feet, hands and face. Make note of things like what time of day the sensations occur, is it burning or pins and needles or both? How long does it last? What seems to make it worse? Better? Etc. The more details you can provide, the better you can help your team find the cause and hopefully solutions.

How long ago did you have the vaccine?

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Hi,
Thanks for this reply! I got vaccine 4.5 weeks ago. First thing I noticed couple of days after vaccine is my face felt funny and that subsided than week ago I started developing foot symptoms. One thing I find interesting is that my symptoms completely disappear at night and nothing in morning but as days go by they get worse. And it’s burning pain pins and needles no numbness or weakness. It seems all sensory to me. I do wanna mention I do suffer with depression and am on meds for it and I feel since Covid started I have developed anxiety as well.

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@jjmk

Hi,
Thanks for this reply! I got vaccine 4.5 weeks ago. First thing I noticed couple of days after vaccine is my face felt funny and that subsided than week ago I started developing foot symptoms. One thing I find interesting is that my symptoms completely disappear at night and nothing in morning but as days go by they get worse. And it’s burning pain pins and needles no numbness or weakness. It seems all sensory to me. I do wanna mention I do suffer with depression and am on meds for it and I feel since Covid started I have developed anxiety as well.

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These are all great things to note for your upcoming appointment, jjmk. You might want to even add details like time of day the sensations start, how long they last and what you were doing at that time. Be sure to bring any medications to the appointment too. I can understand growing anxiety related to COVID. It's been a tough year and counting. Not knowing so many thing with this pandemic, including when will things ever ressemble normal again is hard on our emotional health to say the least.

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@milly93

I have wondered the same thing about the J&J and AstraZeneca.

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Me too. Also, in my country I can get Sputnik V (russian) and Sinopharm (chinese) vaccine.
Sinopharm is based on a whole inactived virus, which is performed using the old technology, already used on so many vaccines we got in early childhood. This vaccine has the least unexpected actions, but proven to be less effective, smth like 70-80% on real cases.
Sputnik V is like Astra-zeneca, using a adenoviral vector, proven to be 91% effective but more likely to provoke symptoms like fever, joint and muscle pain, etc.
Personally, would like to get Sputnik V, but too scared to do it. Maybe I should go with the chinese one, surely better than not getting any protection from the virus.
My neuropathy hadn yet been precisely diagnosed, so that makes it harder for doctors to give me a recommendation.
My question is: if a person is supposed to get a negative immune reaction and aggravated neuro symptoms, does any vaccine will do that, some vaccines present a higher risk?
Thank you.

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@joeyd5641

How is everyone who got a new onset or worsening of neuropathy from the vaccine doing now? I seem to be having some let up the last few days , but I am megadosing Alpha Lipoic acid, b12 and Vitalituses Palmitoylethanolamide . These have worked in the past for me also. I recommend for anyone with Neuropathy. I did report my case to VAERS. Let me know if any of you are feeling better after the neuropathy induced by the vaccine. If there are 15 or so of us here, there must be so many more suffering after the shot also. I am glad though to be protected from Covid, but holy cow there should be a warning for the neurological possiblities. Does anyone know anyone who didnt have any previous neuropathy that now has it from the shot? Regards, Joe

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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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@revisl

Good afternoon - while I am not happy that you are suffering at least I feel I have found a home. After being administered Gadavist contrast for an MRI I had extreme pain in my left leg for about 20 minutes - it was a 12 in a chart out of 1 to 10. It was breathtaking - it subsided but my feet started to act weird, tingling, hot and burning at times. Then I got the first Modern shot - and it got real bad - I started to go to my PCP but he was/is clueless and not interested other than suggesting Curcumin. Went to a dermatologist who thought it is EM - I then started to educate myself joined this forum and others on FB and then got the second Moderna shot - which made it so much worse - I spent days and nights crying out of pain. I cannot take Gabapenting, Cymbalta, Lyrica - I handle all medications very poorly with strong side effects. So I got some compounded creams that I experiment with - and it seems it gets more manageable. I think the pain after the Gadavist was nerve pain and triggered some Neuropathy in my feet and Moderna made it worse. I think I might have a form of Neuropathy and Erythromelalgia - anybody can relate to this story sad story? Any encouragement or your self help stories would be welcome.
Revi

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I have a list of allergies a mile long, many with anaphylaxis as a reaction, including the three you mentioned. I have small fiber neuropathy in both feet as well as Complex Regional Pain Syndrome there. I have used Lidoderm Pain patches on both feet, also lidocaine-prilocaine cream. My pain management doctor has done epidurals and I am scheduled for a Radio Frequency Ablation to the sural nerve. I have multiple spine issues from neck to tail bone, including having a spinal cord stimulator installed in 2012 and a new one in 2018. Together we decided I should not get the vaccine. I live alone, my husband died in January of 2020, my one daughter does my grocery shopping, the only places I go to are doctor offices so we thought the lack of exposure to virus was pretty slim. After reading what you all have gone through I am very grateful for that decision! My prayers for you who are suffering. May just the right help be on its way.

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