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COVID vaccines and neuropathy

Neuropathy | Last Active: Nov 14, 2023 | Replies (2164)

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@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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Replies to "Not really sure if this will help anyone but I am 35 yrs old, with peripheral..."

Hello @lulu85, Welcome to Mayo Clinic Connect. I'm really sorry to hear how bad the COVID vaccine side effects were for you. It had to be extremely difficult for you to get the second vaccine knowing how the first one affected you. I had both Pfizer vaccine shots with minimum side effects. Which vaccine did you get? Also did you report the side effects to the CDC?
https://www.youtube.com/watch?v=vpisaRmzX0U

@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?

I unfortunately agree with you. I have neuropathy and an autoimmune disease. I’ve posted on this discussion previously. After both vaccine shots my neuropathy symptoms increased significantly. They have leveled off, but at a higher level than previously. I’ve only been having neuropathy symptoms for about five months. Except for tremors, which my be related to medications I take, the numbness, pain, and tingling was very slow to come on until receiving the vaccine.

I recently had my first visit to the neurologist, so the origins of my neuropathy are not yet determined. Although he suspects its related to the autoimmune disease I have. He also was not surprised when I told him of the increased symptoms after the vaccine, as it is designed to build immunity and could potentially have an impact on people with certain types of autoimmune caused neuropathy.