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?

Interested in more discussions like this? Go to the Neuropathy Support Group.

chezpl69 | @chezpl69 | Apr 7, 2021
In reply to @athenalee "I have taken a low dose of Gabapentin for two years, 200–400 mg, first for liver..." + (show)
@athenalee

I have taken a low dose of Gabapentin for two years, 200–400 mg, first for liver pain, but now for neuropathy pain (just to note, I only weigh 110 pds. and have a good metabolism). I take it in the evening, as that’s when the pain is worse and it helps me sleep. I’ve not had any side effects from it.

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Thanks I'm a bit nervous about taking it. I seem to be very sensitive to medication.

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2 replies
tigreyes2004 | @tigreyes2004 | Apr 8, 2021
In reply to @merpreb "@tigreyes2004 |- Welcome to Mayo Clinic Connect. Good for you! Although I am excited about having..." + (show)
@merpreb

@tigreyes2004 |- Welcome to Mayo Clinic Connect. Good for you! Although I am excited about having my second one this Sunday I also have a certain fear. So I know what you mean. It's new and it's scary, especially for those with underlying illnesses. In the US we have only been injecting people for about 8 months, not a very long time at all. But the risk of contracting COVID-19 is far more severe than the risk of having the vaccine and a reaction to it.

I think that every one of us who has the vaccination is a pioneer! We are brave and willing to help stop this deadly virus. Our sore arms and aches are our badges of honor! Good for you! I hope that you feel proud!

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Thank you so much. I am having anxiety bc I am scared but I have to do this. God Bless.

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tigreyes2004 | @tigreyes2004 | Apr 8, 2021
In reply to @chezpl69 "Does anyone here take gabapentin? My doctor prescribed it for the burning I'm experiencing after taking..." + (show)
@chezpl69

Does anyone here take gabapentin? My doctor prescribed it for the burning I'm experiencing after taking the first shot of the pfizer vaccine. Are the side effects as bad as they say?

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I take Gabapentin,.
300 mg in the morning w/ Cymbalta 60 m
& 300 mg at night.
It really is not helping me but I take it anyways bc if I do forget to take it , I notice I am in more pain.
The only side effect I see that I have is that I short term memory & I never had it before.
Best of luck to you & God bless.
Genie

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tigreyes2004 | @tigreyes2004 | Apr 8, 2021
In reply to @chezpl69 "Thanks I'm a bit nervous about taking it. I seem to be very sensitive to medication." + (show)
@chezpl69

Thanks I'm a bit nervous about taking it. I seem to be very sensitive to medication.

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I am sensitive to meds too. I can't take any pain pills or things of that nature. I have adhesions in my stomach that are knotted & twisted & it can not be removed so I suffer from a lot of different types of pain. Hang in there.
God bless
Genie

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1 reply
mrspowerssd | @mrspowerssd | Apr 8, 2021
In reply to @mawagner13 "This happened to me too. I developed neuropathy 2 yrs ago after taking Levaquin. It improved..." + (show)
@mawagner13

This happened to me too. I developed neuropathy 2 yrs ago after taking Levaquin. It improved after about a year and I was no longer on any medication for it. Other than occasional mild flares if I overexerted, it was a non-issue. I got the first Moderna shot Jan 5 and within 6 hrs my feet started to burn. Within 8 hrs it was nearly my entire body and it did not go away. I saw my PCP and said although neuropathy isn't an expected reaction to the vaccine there are too many unknowns to know. She wouldn't advise on the 2nd dose because there are too many unknowns. I ended up not getting the 2nd dose. Unfortunately I still have the neuropathy all over. I've searched my brain to find another variable to blame, but there just isn't one that I can see. I'm now back on gabapentin 3x a day. I did report this through the vaers system. I hope in time things calm and it's not permanent. Every individual is unique and rare doesn't mean impossible, which medical providers often forget. In no way do I want to sway anyone from the vaccine. We all have to choose based on our own health history, risks, etc. My family and friends who received it had no problems. But I did want to share my experience.

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mawagner13 - I've come across your post searching for this exact situation. I was hospitalized in Aug 2020 and given levofloxacin for 8 days. I've too developed a neuropathy. It's been about 8 months now and still hasn't gone away. I would love to connect if you are open to that. No one really understands what I'm going through. Appointments in my area are starting to open up for the covid vaccine, and I'm terrified it will make the neuropathy worse. My doctors all seem to just have the same copy paste "the benefits outweigh the risks" line, which I'm sure is true, but doesn't make it any less scary.

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1 reply
Moderator
Amanda Roe | @amandajro | Apr 8, 2021

Hello @mrspowerssd and welcome to Mayo Clinic Connect. I am glad you were able to find someone else who you are able to relate to in @mawagner13. It is certainly difficult to navigate any healthcare dilemma when you don't feel understood or heard so I do hope you will find the support you are looking for here with others!

I know there are several others with Neuropathy on Connect who have struggled a great deal with their decision to get the vaccine and weigh the risk of potential side-effects. Members like @artscaping @johnbishop @avmcbellar and @tigereye have all been active in this discussion and feel may have varying views that they would be willing to share.

Have you signed up for the vaccine yet or just noticed more availability in your area?

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Mentor
John, Volunteer Mentor | @johnbishop | Apr 8, 2021

Hello @mrspowerssd, I would like to add my welcome to Connect along with @amandajro and others. I had similar concerns when the COVID vaccines started rolling out since I also have small fiber PN along with other conditions and being age 77. I worried more about what happens if I contract COVID so decided to go ahead and get the vaccine when it was offered to me late February. I've had both Pfizer shots plus my first Shingrix vaccine with only minor side effects which most people have reported having - sore arms for a day after both shots and extreme fatigue on the second day after the second shot. Really happy I got the shot now since I'm less anxious about contracting COVID.

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Mentor
Chris Trout, Volunteer Mentor | @artscaping | Apr 8, 2021
In reply to @amandajro "Hello @mrspowerssd and welcome to Mayo Clinic Connect. I am glad you were able to find..." + (show)
@amandajro

Hello @mrspowerssd and welcome to Mayo Clinic Connect. I am glad you were able to find someone else who you are able to relate to in @mawagner13. It is certainly difficult to navigate any healthcare dilemma when you don't feel understood or heard so I do hope you will find the support you are looking for here with others!

I know there are several others with Neuropathy on Connect who have struggled a great deal with their decision to get the vaccine and weigh the risk of potential side-effects. Members like @artscaping @johnbishop @avmcbellar and @tigereye have all been active in this discussion and feel may have varying views that they would be willing to share.

Have you signed up for the vaccine yet or just noticed more availability in your area?

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Good evening @mrspowerssd, If.I had read about all of the vaccine reactions before getting the vaccine, I think I would also have been unnerved and anxious. Fortunately, I was vaccinated early before any of the reactions were made public, However, I had no effects from the second injection. I was almost worried that I got a placebo instead of the vaccine....because it went so smoothly without any discomfort. Please be safe and protected.
Chris

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chezpl69 | @chezpl69 | Apr 8, 2021
In reply to @tigreyes2004 "I am sensitive to meds too. I can't take any pain pills or things of that..." + (show)
@tigreyes2004

I am sensitive to meds too. I can't take any pain pills or things of that nature. I have adhesions in my stomach that are knotted & twisted & it can not be removed so I suffer from a lot of different types of pain. Hang in there.
God bless
Genie

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Thanks. This is so frustrating, doctors don't understand, even the people at the pfizes had no answers. I'm going to give it a little more time before I try gabapentin. Good luck with your vaccination.

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1 reply
mawagner13 | @mawagner13 | Apr 8, 2021
In reply to @mrspowerssd "mawagner13 - I've come across your post searching for this exact situation. I was hospitalized in..." + (show)
@mrspowerssd

mawagner13 - I've come across your post searching for this exact situation. I was hospitalized in Aug 2020 and given levofloxacin for 8 days. I've too developed a neuropathy. It's been about 8 months now and still hasn't gone away. I would love to connect if you are open to that. No one really understands what I'm going through. Appointments in my area are starting to open up for the covid vaccine, and I'm terrified it will make the neuropathy worse. My doctors all seem to just have the same copy paste "the benefits outweigh the risks" line, which I'm sure is true, but doesn't make it any less scary.

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Oh I’m sorry. Flouroquinolone toxity is horrible. Happy to connect and I’ll share information. FQT symptoms,severity and recovery vary greatly and Covid adds such a twist.
There’s also a website Floxiehope that offers a ton of information but some of it scary. There might be some other vaccine stories on there though to help with your decision. There wasn’t when I got mine but that was a few months ago.
Let me know how to connect directly.

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