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.

I can absolutely say that while I had COVID (had vaccines) I developed neuropathy with the horrible pains streaking up my legs and still have it and guess will always have it. What do any of you do when the pain is really terrible?
Tramadol just takes the edge off of the shooting pain; but, it still is there. So far I have tried the Boston Scientific SCS trial (no improvement) Saluda (no improvement) an epidural (no improvement) have any of you found ANYTHING that will help? Are you taking ie Pregabalin during the daytime also-if so how mg.?

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I had Covid before it was announced as a new virus. Thought it was a bad flu. Got over it took vaccine when it was available. I started getting symptoms almost a year later of diabetes, neuropathy, Glaucoma worsened, and fibromyalgia. Got Covid again and it is now Long Covid. I believe Covid and the vaccine brought out these diseases which were in my body. My immune system was compromised so I will not take vaccine. I’m 73. I believe the AARP has info on side effects. You also need to research for yourself on sites like Mayo Clinic and Others. I am also very susceptible to side effects. My doctor believes I shouldn’t take it either. Everyone is different. I don’t believe things are black and white but what is suitable for you.

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@bettyg81pain

I can absolutely say that while I had COVID (had vaccines) I developed neuropathy with the horrible pains streaking up my legs and still have it and guess will always have it. What do any of you do when the pain is really terrible?
Tramadol just takes the edge off of the shooting pain; but, it still is there. So far I have tried the Boston Scientific SCS trial (no improvement) Saluda (no improvement) an epidural (no improvement) have any of you found ANYTHING that will help? Are you taking ie Pregabalin during the daytime also-if so how mg.?

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I 300 mg Gabapentin 3X a day and Cymbalta 60 mg 2X a day. I have nerve pain all over my entire body.

I was on Lyrica but the Gabapentin seems to be helping more. I just wish they could take out the nerves that are giving us so many problems. But that's impossible I'm afraid.

Good Luck to you.

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@bettyg81pain

I can absolutely say that while I had COVID (had vaccines) I developed neuropathy with the horrible pains streaking up my legs and still have it and guess will always have it. What do any of you do when the pain is really terrible?
Tramadol just takes the edge off of the shooting pain; but, it still is there. So far I have tried the Boston Scientific SCS trial (no improvement) Saluda (no improvement) an epidural (no improvement) have any of you found ANYTHING that will help? Are you taking ie Pregabalin during the daytime also-if so how mg.?

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My nerve pain is much better now 2.5 years after the Pfizer vaccines. I'm able to control it at night using 5% Lidocaine patches available by prescription. I'm not sure these would have helped at the height of my injury, but it would be worth a try. Like you, my nerve pain could not be controlled with Tramadol. Out of desperation, I discovered the nerve pain and numbness in my feet and calves was worsened by sitting. I therefore avoided sitting completely for 3 months and had to take medical leave. If not for that, I believe I would eventually have been hospitalized. I believe the dorsal root ganglion neurons near my spine were also under autoimmune attack, which could explain the unusual intolerance for sitting. My peripheral neurologist did not disagree that this could be a possible explanation. I know it sounds weird, but you could try avoiding sitting to see if the nerve pain then becomes manageable.

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Has anyone had the new Comirnaty vaccine from pfizer yet?

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@txflower2023

Also me. Hugs I trust none of vaccines for a friend was told one set of ingredients, I asked for a sample to test and got a whole set of other answers. Each one has to deal with their own. I fear not flu, covid, RSV, shingles, hepatitis, pneumonia etc for I am from pioneer stock. My beloved mother survived something and passed on wonderful immunity to her kids. The vaccines would removed that immunity.

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To be blunt, I'm calling b.s. No one is handing out samples and you're not testing them. Nothing takes away immunity except time and old age. There are people (like your mother?) who do have super immunity due to certain T-cells (research ongoing), but the vaccine absolutely does not remove but only adds to immunity. I just read an incredible article in the NY Times on how immunity forms, increases and wanes. Unfortunately I cannot share it as it is for subscribers only (yes, I tried anyway). I can say that vaccines + exposure to viruses both contribute to the immune system. Those who thought herd immunity would happen were wrong. The virus mutated too rapidly which is why the vaccines need to evolve as well.

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@pacer3702

I developed sensory and motor peripheral neuropathy after the Pfizer vaccine. My outstanding peripheral neurologist agrees the vaccine was the likely cause. My deep knees reflexes have returned 2 years later and I am slowly improving overall. While the initial vaccines saved many lives, they also seriously injured many people. After considerable research, I believe the government is not being transparent about the true serious adverse reaction rate.

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I have read studies (forgive me for not taking the time to find the links) about this very issue. Yes, a very small percentage of people will develop neuropathy after the injection. However, these people are already predisposed due to genetics and would have also developed neuropathy upon becoming infected with covid. In fact there is a greater chance of developing neuropathy with covid. I'm glad your symptoms seem to be improving. My neuropathy is chemo induced and will probably never improve.

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@danye1

Yesterday (10/3/23), I got the updated Covid vaccine (Comirnaty) and within 30 minutes both my feet burned fiercely and tingled. I was diagnosed with small fiber neuropathy in 2009, so I am accustomed to paresthesia and pain in my lower extremities. However, this dramatic increase after the vaccine is alarming. The burning/tingling in the feet has subsided some, but the flare-up in pain, fasciculations and heaviness in my calves and the back of my thighs, which happened after the injection, continues and is worrying. The same thing happened after my first Covid injection in March 2021, but it wasn't nearly as severe and resolved within a couple of hours. I'm worried this time it might not resolve at all. Anyone have experience to share?

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Weird! I’m new here. I don’t like these forums (no offense) but I’m getting desperate and I belong to one other one called “stuff that works “ (ironically nothing works) anyway all they talk about is how Covid and/or vaccines did this or that and I suffer from sfn so horribly for over a decade now that I never thought about the issue. But last week I got my COVID booster and my flu vaccine at the same time and it was over a week of a really bad flare up where I couldn’t even wear pants from the burning. So I thought hmmm? Maybe it was the covid booster or the fact I got both vaccines at the same time? Who knows? More mystery, more thoughts on a disease that has no cure and no treatment.

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A gentle reminder about the Community Guidelines (https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/). These Community Guidelines offer 12 short rules of conduct that help keep the Mayo Clinic Connect community safe, supportive, inclusive, and respectful.

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@dinawashere

Weird! I’m new here. I don’t like these forums (no offense) but I’m getting desperate and I belong to one other one called “stuff that works “ (ironically nothing works) anyway all they talk about is how Covid and/or vaccines did this or that and I suffer from sfn so horribly for over a decade now that I never thought about the issue. But last week I got my COVID booster and my flu vaccine at the same time and it was over a week of a really bad flare up where I couldn’t even wear pants from the burning. So I thought hmmm? Maybe it was the covid booster or the fact I got both vaccines at the same time? Who knows? More mystery, more thoughts on a disease that has no cure and no treatment.

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Hi @dinawashere Welcome to Mayo Connect. The goal of this forum is to be a kinder, gentler place than most of the online support group formats. Occasionally discussions get a little heated and we strive to bring that back under the guidelines of respect and civility. So I hope that you’ll feel welcome and find the support you need here.

You may be right about your Covid booster or any vaccine actually, allowing for a flare up of some pre-existing conditions. A few years ago I had a serious spinal cord inflammation not related to Covid or the vaccine. With treatment and therapy my spinal cord healed and back to normal.
About two weeks after the first vaccination I was alarmed one morning when I woke up with some of the same initial symptoms of my demyelination of my spinal cord incident a few years before. So I quickly called my bone marrow transplant team at Mayo to let them know. My doctor scheduled an MRI and my neurologist confirmed that my spinal cord was ok. Pfhew. Speaking with the neurologist he did mention that the medical community was seeing evidence at that time (early 2020) that some patients with pre-existing neurological conditions such as neuropathy, Bells Palsy, Shingles, etc., were experiencing some minor symptoms of their disease which disappeared within 2 weeks to a month. My symptoms did go away within two weeks. When I get a Covid vaccination or flu shot…and recently an MMR vaccine, each time I get vague symptoms again but they go away.

Has your flare up gotten any better for you?

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