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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mortster | @mortster | Apr 20, 2023

In reply to @jeancc "My last booster (Nov. 2022) caused my neuropathy to really flair up. Did anyone have this..." + (show)

Thanks for your input!

mcc | @mcc | Apr 20, 2023

In reply to @jeancc "My last booster (Nov. 2022) caused my neuropathy to really flair up. Did anyone have this..." + (show)

Yes it happened to me as well. Never had neuropathy until after my 2nd vaccination then hit hard and painful in my hands and feet

rlgotthelf | @rlgotthelf | Apr 20, 2023

In reply to @jeancc "My last booster (Nov. 2022) caused my neuropathy to really flair up. Did anyone have this..." + (show)

I didn't get neuropathy in my left leg up my whole left side, until I go the 1st Booster shot ! It fired andwouldnt stop.. Now, I can't get any treatment my left side!

annregister | @annregister | Apr 20, 2023

In reply to @jeancc "My last booster (Nov. 2022) caused my neuropathy to really flair up. Did anyone have this..." + (show)

I really believe I got worse after the Covid vaccines. I had tingling and burning in my toes since 2012. After taking the vaccines I became a person who needed assistance doing almost everything. In the meantime, my A1C was below six. And, my doctor took me off all diabetic medications. But the neuropathy kept getting worse. I was dropping things, didn’t feel the gas peddle or brake, numbness and tingling in hands and feet, burning all the time; it never stopped. However, we were told to take the vaccine to keep our jobs. So, I got both does of the Moderna. I ended up in the ER with very high blood pressure after both shots. Shortly after getting vaccinated, the pain got so much worse. I made an appointment with PCP and got into see a Neurologist. I saw him the first time, added more Gabapentin and sent me on my way. Covid hit full blast and I never got to see that neurologist again. I began to think this pain was all in my head so I continued to work (as a first grade teacher). My husband was driving me to and from. I cried all the time because of the pain and felt like I was slowly losing myself. So, this is not even a dent into my story but I truly agree that the Covid Vaccine made my neuropathy worse.

davidhpress | @davidhpress | Apr 21, 2023

In reply to @jeancc "My last booster (Nov. 2022) caused my neuropathy to really flair up. Did anyone have this..." + (show)

Gabapentin did nothing for my neuropathy but Benfotiamine (over the counter) really has helped a lot as well as a few others but I strongly recommend Benfotiamine up to 300mg twice a day although you can start with it once a day or 150mg twice a day. Working very well for me along with other otc drugs.

swanson2023 | @swanson2023 | Apr 21, 2023

In reply to @jeancc "My last booster (Nov. 2022) caused my neuropathy to really flair up. Did anyone have this..." + (show)

Wow!
Thank you all for sharing!!

Imagine !
For others’, and the future’s, sake our healthcare system having leadership and management that listens, learns, and improves preventing and healing PN.

Our stories reveal the need - opportunity - for human leadership.
A Mayo Clinic opportunity.

Imagine all our experiences, and others, being shared, captured, and used to inform and help our healthcare system serve our physicians in decision-making for serving the needs of patients.

Serving patients in understanding, preventing, and healing PN - etc.

Opportunity for human leadership in the use of technology for humans’, not machines, sake.

My journey with PN, and all your stories, have revealed to me the need and urgency for human leadership in healing our healthcare system.

helene71 | @helene71 | Apr 22, 2023

In reply to @hello2 "The alpha lipoic acid over the counter or by prescription? Thank you for sharing." + (show)

Tried Nervive with alpha lipoic acid and vitB12 did nothing for me. Sorry to say. I will try any suggestions I read about on this site as you are the only place with comments and answers.

hello2 | @hello2 | Apr 22, 2023

Does anyone know if you can take Lyrica along with Benfotiamine?

pacer3702 | @pacer3702 | Apr 22, 2023

In reply to @annregister "I really believe I got worse after the Covid vaccines. I had tingling and burning in..." + (show)

I developed sensory and motor peripheral neuropathy after the Pfizer vaccine. Information and support is available from the Neuro V Long-Haulers Facebook group and also React19.org. I don't know how I would have navigated my vaccine injury without that Facebook group.