Anyone had a problem with neuropathy after receiving the vaccine?

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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Profile picture for shona @shona

Sounds familiar. I’ve had PN for 7 years. First Pfizer I was okay within a few weeks after second dose my flare ups are now terrible Why are these reactions to the vaccine not out there for people to see and read about before they vacc8nate ?

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I think because they are only now finding out about these side effects. This is why all of us should report them at VAERS- how else can they know? Many among us didn't put 2 + 2 together at first- only after it happened again after the second vaccination and/or the booster, the penny dropped, so to speak. Once there's enough evidence, they might be able to make a vaccine that is better for people with neurological issues.

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Profile picture for kbirchem @kbirchem

I was also put on rosuvaststin by Dr Malachia Trout . Risuvastatin can take you from pre-diabetic to diabetic. It can also raise your blood glucose. I was informed of neither. She also took me off metformun during the same time frame .

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I never had sugar issues I've been on this medication for almost 2 years now my blood sugar is going high this must be the reason I used to take pravastatin before with no problems this one has really put up my sugar

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Profile picture for total99 @total99

How to report to VAERS?

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Report it at vaers.hhs.gov

If EVERYONE that has experienced symptoms can please report, we can get someone’s attention so that this can be looked into.

This is literally ruining my life right now, and I don’t want others to unnecessarily suffer the same fate.

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Profile picture for ninette @ninette

I think because they are only now finding out about these side effects. This is why all of us should report them at VAERS- how else can they know? Many among us didn't put 2 + 2 together at first- only after it happened again after the second vaccination and/or the booster, the penny dropped, so to speak. Once there's enough evidence, they might be able to make a vaccine that is better for people with neurological issues.

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You are so right, well put! The urgency of the Covid pandemic has us all having to make decisions for what we think is best, and without data, the experts can’t do proper analysis and make scientific conclusions about the vaccine. They know a lot more than us though in issuing guidance, though it’s all being fine-tuned. Sadly, we need to keep in mind that the vaccine is for the entire world population, which includes a lot of more underlying health conditions other than neurological, so the analysis on the vaccine on underlying health conditions, or new ones it could possibly create, is indeed a monster! VAERS is critical for this process!

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Profile picture for lk61 @lk61

Thank you for this link. It was strong information. Are you aware of any on-going studies on COVID vaccine reactions? I have registered on a website that seems to be NIH based, however it does not return any studies which match my conditions. I would like very much to be involved in any research related to this, I feel it would somehow go a little ways towards making all the fear and discomfort worthwhile. I plan to bring it up with my own neurologist at my next visit, but I have learned to have very low hopes with him. Thank you for any resources, and for the wonderful job you do with this forum.

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I am in the same position of not being able to have the vaccine, but because I have so many allergies. I can be (and have been) allergic to almost anything. Only one of my doctors believes me, the rest just think I'm neurotic. I did read a study last year from England that showed neurological damage to some people from the vaccine. Now, of course, I can't find the site, but I'm not great at searching. Where I live has a very high covid rate, and it's frightening., but I'm not willing to take the chance. Peace and healing to you, you are not alone.

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Profile picture for cyp238ress @cyp238ress

Report it at vaers.hhs.gov

If EVERYONE that has experienced symptoms can please report, we can get someone’s attention so that this can be looked into.

This is literally ruining my life right now, and I don’t want others to unnecessarily suffer the same fate.

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Do you trust vaers to protect your privacy?

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Profile picture for pacer3702 @pacer3702

Given the 10 months of disability I have experienced, which began 2 weeks after the first vaccine, I will not be getting the booster. One of my neurologists and my rheumatologist support that decision. I was healthy and active prior to these vaccines. I recommend that you join Neuro V Long-Haulers on Facebook. You can read about the decisions of others who faced the same dilemma. I wouldn't rush into a booster until you have time to be comfortable with your decision.

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Hi @pacer3702, thanks so much for your reply.
I'm sorry to learn of your experience with the vaccine. I'm so utterly shocked at how many people are struggling due to this.
I haven't yet had the shot. Terrified. Having issues prior and terrified of it worsening subsequently.
It's interesting to note that most of the doctors I've spoken with have the generalist perspective, which I can understand. But the additional research is only slowly coming to light-this takes time, and then it takes more time for it to trickle down into general discourse.
Appreciate your feedback.

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Profile picture for mawagner13 @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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Hello @mawagner13 ,

I was also affected by levaquin 3,5 years ago. With tendon flares, neuropathy, muscle weakness , etc. So, I did not get the covid vaccine yet due to I am afraid. I wonder whether your symptoms cleared with time? Unfortunately I had a cut in my finger last week and I got TD shot. Within 2 days I my body started tingling, leg weakness and balance issues. Doctor asked using steroid injections but as I explained my drug reaction history he did not apply it. At a time, I will have to get this covid shot also, so I wonder how you handled and fixed neuropathy if you could succeded.

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Hi. After the Johnson and Johnson(which I had to get to keep my job) I had a flare but it didn’t last nearly as long and wasn’t as severe as the flare from one dose of moderna I got 8 mo prior. After both I just kept taking my supplements and after the J&J added in Quercetin and Bromelain. Honestly time seems to be the tincture- both for levaquin toxicity and flares from vaccine. I’m not 100% and doubt I ever will be but after 3 yrs I’m off all medication and have adapted to life post levaquin. Anyone suffering from floroquinolone toxicity knows the pain, life altering effects and ongoing fear that permeates every aspect of life especially our medical decisions. Best of luck to you.

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Since getting Pfizer COVID vaccine 1 and 2 I developed an autoimmune response with neuropathy in feet and nerve sensitivity. I am scheduled to see a rheumatologist in March.

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