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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AMEN.....distinguished medical community 🌈. Please let’s have some essential feedback on this vaccination issue. Positive input will help to widen the vaccination participation rate❗️YOUR GUIDANCE is very important.
🙏🏾 Thank you❗️

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@athenalee

I too posted early in this discussion. I have remained saddened and disheartened as I read the continuing posts going on four months now. And, still so little response from the medical world. As I’ve said numerous times, I am an advocate for the vaccine and it’s obvious impact in helping us conquer this devastating pandemic.

All I’m asking for are answers about why so many of us were impacted with new or increased neuropathy, research as to what might lead to a treatment for our symptoms, and a warning to others that neuropathy may be a side effect of the vaccine.

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I second that emotion. The silence from the medical community is deafening regarding the long term side effects from the vaccines. Trying to obfuscate the issue is not working for them. People are suffering and deserve answers and proper treatment. We all took the vaccines in good faith and deserve better.

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Hello everyone. I am sorry to see that some people continue to have disturbing symptoms apparently related to the Covid vaccines. But please be assured that these concerns are not new with Covid, and are not being ignored by the medical community. I know it is difficult to accept that an injection meant to prevent serious illness seems to do the opposite for some of us.

I would like to offer a few observations for your consideration:

The vaccines have proven amazingly effective thus far, with the numbers of new cases, hospitalizations and deaths falling 80-90% across the country as more people are immunized, in spite of the more infectious variants and the removal of mask mandates, closures, etc.

The experiences you read about on Mayo Connect do not represent the community at large of those who have been vaccinated. The discussion here is driven by people who have reacted to the vaccine and are seeking answers. Reading VAERS, less than .5% of people receiving the vaccine report any adverse reaction, and only a tiny fraction of those report any neurological symptoms, which includes both headache and tingling at the injection site or in that arm as well as more severe reactions. Even accounting for probable underreported, far fewer than 1 in a thousand seem to have even fleeting neurological effects.

The medical community is not ignoring adverse effects. They are being prioritized and studied as we speak. Life threatening reactions like blood clots and myocardial are placed ahead of issues like inflammatory flares and neuropathy. All regularly reported adverse reactions will be considered before full approval of the vaccines.

Covid was so dire that many experimental treatments were allowed for emergency use, as more is learned some have already been withdrawn from use.

It takes a great deal of time and resources to study these issues, have conclusions peer reviewed and published. Until that happens, busy providers like our PCPs and specialists have no more information than we laypeople, hence are reluctant to make decisions.

As more is learned, I expect to see more clarity around which vaccine is better for a specific audience.

I'll close by saying that I personally had huge inflammatory flares from Shingrix, the Quadravalent flu vaccine and the Pfizer vaccine. Two of them required steroids to resolve. I will still continue to get vaccines because the illnesses would likely be more severe for me than those reactions.

Sue

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I hop all doing well..
After 3 months from my 2nd Pfizer vaccine suddenly I had left side body mild numbness including my left face. I went to ER, CT scan Mri and blood work all came normal.. They diagnosed me as a TIA.. For that neurologist start aspirin and plavix. The Numbness was on and off migratory every where left. RT upper lower then went off for 1 or 2 days then come again..After that I feel like my muscles is weak but the power is 5/5. 40 days later my numbness and weakness started to come down but I doveloped strange twitching every where on my body lasts for seconds then resolved after 1 week. Then all my symptoms disappear, I thought it will not come again.
One month without these symptoms then again started but in quick process (Numbness,weakness then twitching)
And I still have these symptoms But in a mild form.

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@dralmalky

I hop all doing well..
After 3 months from my 2nd Pfizer vaccine suddenly I had left side body mild numbness including my left face. I went to ER, CT scan Mri and blood work all came normal.. They diagnosed me as a TIA.. For that neurologist start aspirin and plavix. The Numbness was on and off migratory every where left. RT upper lower then went off for 1 or 2 days then come again..After that I feel like my muscles is weak but the power is 5/5. 40 days later my numbness and weakness started to come down but I doveloped strange twitching every where on my body lasts for seconds then resolved after 1 week. Then all my symptoms disappear, I thought it will not come again.
One month without these symptoms then again started but in quick process (Numbness,weakness then twitching)
And I still have these symptoms But in a mild form.

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Hello @dralmalky, Welcome to Connect. You mentioned that you were diagnosed with a Transient ischemic attack (TIA) as the cause of the symptoms and the neurologist started you on aspirin and Plavix. Here's some information from Mayo Clinic's website on TIA's - https://www.mayoclinic.org/diseases-conditions/transient-ischemic-attack/symptoms-causes/syc-20355679.

Did your doctor or neurologist say what caused the TIA? Have you discussed the symptoms coming back in a milder form with your doctor?

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Thanx for your reply....
Till now I didn't tell him.I just start these symptoms again 1 week back.
And according to neurologist there was no clear cause of it. And I believe these symptoms wasn't TIA because it's migratory numbness with Strang sites.

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I am just joining the group and it saddens me to see so many people that have gotten neuropathy after the vaccine. I have been post vaccine for almost 2 months and just went to the doctor last week. He said he has seen several cases like mine and prescribed Gabapentin but yet to take it because of the side effects. Has anyone take this drug and if so has it worked. I am having tingling and burning in my hands and feet and it is at it's worst during the night. Sometimes when I wake up it feels like a creepy crawling feeling all over my body. I regret getting the shot, but at this point there is nothing I can do about it. Feeling very depressed 🙁

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@dralmalky

Thanx for your reply....
Till now I didn't tell him.I just start these symptoms again 1 week back.
And according to neurologist there was no clear cause of it. And I believe these symptoms wasn't TIA because it's migratory numbness with Strang sites.

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I had the vaccine 3 months ago, I have advanced neuropathy but I had it before I took the vaccine and it didn't affect my neuropathy. So sorry this has happened to you and yes the gabapentin helps. I take it every 6 hr.

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@tiredoftingling

I am just joining the group and it saddens me to see so many people that have gotten neuropathy after the vaccine. I have been post vaccine for almost 2 months and just went to the doctor last week. He said he has seen several cases like mine and prescribed Gabapentin but yet to take it because of the side effects. Has anyone take this drug and if so has it worked. I am having tingling and burning in my hands and feet and it is at it's worst during the night. Sometimes when I wake up it feels like a creepy crawling feeling all over my body. I regret getting the shot, but at this point there is nothing I can do about it. Feeling very depressed 🙁

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I’m so sorry you are dealing with this. I had a reaction to my first Pfizer vaccine, burning hands, feet and legs to above my knees. So bad that I couldn’t bring myself to get the second shot. It has now been 10 weeks and in the last week my pain has started to lessen and I am hopeful it will continue to. I hope yours does too. I take gabapentin with no problems. What vaccine did you get?

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@tiredoftingling

I am just joining the group and it saddens me to see so many people that have gotten neuropathy after the vaccine. I have been post vaccine for almost 2 months and just went to the doctor last week. He said he has seen several cases like mine and prescribed Gabapentin but yet to take it because of the side effects. Has anyone take this drug and if so has it worked. I am having tingling and burning in my hands and feet and it is at it's worst during the night. Sometimes when I wake up it feels like a creepy crawling feeling all over my body. I regret getting the shot, but at this point there is nothing I can do about it. Feeling very depressed 🙁

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Hello @tiredoftingling, Welcome to Connect. I'm really sorry to hear you have the neuropathy symptoms after receiving the COVID vaccine. If you have not already done it, I would recommend that you report your symptoms to the Vaccine Adverse Event Reporting System (VAERS) here https://vaers.hhs.gov/

I had small fiber peripheral neuropathy before getting both Pfizer vaccines but it did not make my symptoms worse. Gabapentin does have some side effects but is commonly prescribed for neuropathy pain. You may want to learn what others have shared about their neuropathy journey in the following discussion.

Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Have you tried any alternatives to drugs to help with the tingling and burning in the feet and hands? You can find some different suggestions on the Foundation for Peripheral Neuropathy here -- https://www.foundationforpn.org/living-well/integrative-therapies/

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