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.

Merry, Alumni Mentor | @merpreb | Apr 10, 2021

In reply to @lulu85 "Not really sure if this will help anyone but I am 35 yrs old, with peripheral..." + (show)

@lulu85

Not really sure if this will help anyone but I am 35 yrs old, with peripheral and autonomic neuropathy as well as an autoimmune disorder. I also have two pages worth of allergies and an unable to take many other vaccines....but my doctor was so worried about what would happen to me if I contracted covid that she decided it was best for me to get the vaccine. In all the preparation for me to safely get the vaccine and have everything they thought they would need beyond my epi pen, no one told me (or didn't know) that the vaccine could cause a flare up in me. The day after my first vaccine I started to feel really off...more that just tired. Two days later and I'm full blown neuropathy flare up, barely able to get out of me bed, crying anytime anything touches. I couldn't exactly feel a touch but it lit my nerve endings on fire. After a week my balance was gone and I had very little control over other bodily functions. It has been years since I have had a flare up even remotely close to this bad and now I have no control or hope of help. I spent almost 3 weeks like that. Just as I was starting to get a little better it was time for my second dose. I just had the dose about 12 hours ago and I'm already starting out worse than with the first. Fever, Chills, Headache, Nausea, Vomiting, Body aches, and my nerve endings have started firing making it feel like I'm constantly being stung, pricked, or zapped.
If I had the choice to do this over I would not get the vaccine. I already lived in somewhat of a bubble before covid and that's not changing for me. I only did this so my family wouldn't have to live in a bubble too because of me but what it's done to me has only put more strain on them and caused more damage to my body. There are more side effects that I have that can only be from the vaccine but I don't know how to prove it or make people believe me. My spine has somehow been affected which has limited my mobility. My husband and I are going to do what we can to not only get me help but also spread awareness.
If this only helps 1 person it was worth writing but I hope it helps so many more. Please be careful getting these vaccines if you have any form of neuropathy, autoimmune disorder, or any other health problems. The vaccines were not tested for us or on people like us for a reason.

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@lulu85- Oh, no! If at the writing you are vomiting I would call your doctor for anti-nausea medication, if you can take them. If you can take a pain reliever or anti-inflammatory to help with symptoms, it's ok to do so.

My second shot is tomorrow. I did have a reaction to the first one, Moderna, and am not looking forward to possible side-effects from it But I still think that the benefits outweigh the liabilities. I know that it's easy to say right now as I'm not ill from them/ but I do mean it. So far as we know, no one has died from the side effects of the vaccines.

Have you called your doctor for further suggestions or additional medications to help you?

tigreyes2004 | @tigreyes2004 | Apr 10, 2021

Does anyone think I should take my Gabapentin & cymbalta & regular meds. before I go for the shot?

Merry, Alumni Mentor | @merpreb | Apr 10, 2021

In reply to @tigreyes2004 "Does anyone think I should take my Gabapentin & cymbalta & regular meds. before I go..." + (show)

@tigreyes2004 - Unless your doctor has told you to stop taking your medications then I would continue to do so. I am. The CDC advises no over-the-counter medications to stop the vaccine side effects. But gives the green light for right after.

Talking to your doctor is the best thing!

tigreyes2004 | @tigreyes2004 | Apr 10, 2021

In reply to @merpreb "@tigreyes2004 - Unless your doctor has told you to stop taking your medications then I would..." + (show)

Thank you
My dr. does not even know I am going for the shot but I am going to take them bc I figure if I do get a side effect at least I took the meds. I'd rather know before the shot then after.
I am just so anxious bc I am hearing 4 people had blood clots. I guess I have to take my chances.
Thank you so much for your help.
God bless
Genie

Merry, Alumni Mentor | @merpreb | Apr 10, 2021

In reply to @tigreyes2004 "Thank you My dr. does not even know I am going for the shot but I..." + (show)

Genie- I believe that you are thinking about AstraZeneca. It is not approved as yet in the USA. The three vaccines that are now in use do not have a history of blood clots. They are safe and effective.

chezpl69 | @chezpl69 | Apr 10, 2021

In reply to @tigreyes2004 "Thank you My dr. does not even know I am going for the shot but I..." + (show)

Hi. you should really ask your doctor, I feel for you and say a prayer that all goes well.

tigreyes2004 | @tigreyes2004 | Apr 10, 2021

In reply to @merpreb "Genie- I believe that you are thinking about AstraZeneca. It is not approved as yet in..." + (show)

I heard yesterday that 11 people in Colorado had reaction & I also heard there were 4 reported for blood clots. Not sure where it is. I do know what your saying about the AstraZeneca.I am going to take my chances.
Thank you so much.
God bless
Genie

tigreyes2004 | @tigreyes2004 | Apr 10, 2021

In reply to @chezpl69 "Hi. you should really ask your doctor, I feel for you and say a prayer that..." + (show)

Thank you for your prayers.
I think I am acting like this bc I do have anxiety & depression issues. Once the time comes, I should be alright. I'm just scared I will pass out bc I have a tendency to do that when I am really scared.
Thank you for you support.
God bless
Genie

avmcbellar | @avmcbellar | Apr 10, 2021

In reply to @tigreyes2004 "I heard yesterday that 11 people in Colorado had reaction & I also heard there were..." + (show)

I believe the J&J vaccine is on hold in some places because of blood clots and side effects.

avmcbellar | @avmcbellar | Apr 10, 2021

Hi @tigreyes2004 there is a lot of controversy over the vaccines. It is an individual decision based on ones risks of exposure to the virus and their health history. The one thing people misunderstand is that taking both doses of the vaccine does not mean 95% effectiveness for immunity. It simply means that it is 95% effective for decreasing the severity of the symptoms. I believe that is why we see less hospitalizations with an increase in cases in some states. Someone who gets vaccinated against the virus can still develop the Covid-19 illness or contract the virus. There is no proof thus far that the vaccines provide immunity or decrease the transmission rate. Someone who has been vaccinated after two weeks of the second dose can still be asked to quarantine if they develop symptoms. Hope this helps.

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