1. < Neuropathy

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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marylynn13 | @marylynn13 | Jan 25, 2022
In reply to @debmitchell101614 "Good morning. I'm sorry to hear you are going through this as well. Yes, I can..." + (show)
@debmitchell101614

Good morning.
I'm sorry to hear you are going through this as well. Yes, I can honestly say that this has been the worse year of my life. It is the most hopeless and helpless that I have ever felt.
My reflexes are hyper I think. They are overreactive also. I've thought the same thing about MS and so did the doctors I guess, because I've been two different hospital systems and they both sent me to a MS specialist and both times they have said it is not MS, but my symptoms mimic it very much.
I agree it helps to know that you are not alone. Hopefully soon, someone will have a breakthrough on this and they will come up with a way to help us.
Best wishes to you as well.

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Hi there I am also hyper-reflexic with a diffuse sensory neuropathy. My first big problem was trigeminal neuralgia. Slot of times surgery can be done to help this pain but for me because it was only small nerve fibers that were damaged this was not an option. Botox worked well! We are all so different though!
Best wishes

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debmitchell101614 | @debmitchell101614 | Jan 26, 2022
In reply to @marylynn13 "Hi there I am also hyper-reflexic with a diffuse sensory neuropathy. My first big problem was..." + (show)
@marylynn13

Hi there I am also hyper-reflexic with a diffuse sensory neuropathy. My first big problem was trigeminal neuralgia. Slot of times surgery can be done to help this pain but for me because it was only small nerve fibers that were damaged this was not an option. Botox worked well! We are all so different though!
Best wishes

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Thank you. I will ask my doctor if that is an option for me to try.

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debmitchell101614 | @debmitchell101614 | Jan 26, 2022
In reply to @mdd "What is your diagnosis?" + (show)
@mdd

What is your diagnosis?

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I can't get a diagnosis. They are currently looking at small fiber neuropathy. I have a skin biopsy scheduled for Monday.

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debmitchell101614 | @debmitchell101614 | Jan 26, 2022
In reply to @jgerth "I'm so so sorry this has happened to you. I had flu-like symptoms after my first..." + (show)
@jgerth

I'm so so sorry this has happened to you. I had flu-like symptoms after my first vaccine (moderna) and 5 days after the second vaccine it was as if someone broke every bone in my arms and hands. Or maybe took all the bones out and put them back in the wrong place. I had jaw pain, tooth pain, lock jaw, and shooting pains down my arms and legs, muscle spasms, muscles that would seize and not let go, burning and numbing/tingling. I'm a clarinetist and teacher.....and according to 2 Universities where I teach, I am "unvaccinated" because I have refused the booster. My symptoms have dissipated over the past 10 months but have not gone away by any means. I've been seeing my chiropractor because my Doctor of 25 years has been of NO help....however, my chiro team has been amazing! The only thing that has helped is extra rest, vitamins and homeopathic medicines and epsom salt baths. My main take-away (thank goodness for this group) is that I'm NOT alone! I too am a 55 year old female and my regular doctor and team told me I'm getting old and denied that this sudden onset of extreme symptoms could be linked to the vaccine. I was ridiculously healthy before this - a runner and yogi. I'm so upset that they dismiss women - especially older women....and folks need to talk about these side effects because I think they are more common than we realize. The vaccine needs to be tweaked - but it will only improve if enough people tell their stories. Thank you for sharing yours!

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Oh my gosh!! I can't even describe the feeling of knowing I'm not alone in this. Thank you so much for sharing with me. I haven't thought about going back to a chiropractor because honestly the thought of being adjusted with how bad my body hurts right now does not sound good. It's good to know that it has helped for you.
Thanks again for sharing with me.

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jgerth | @jgerth | Jan 26, 2022
In reply to @debmitchell101614 "Oh my gosh!! I can't even describe the feeling of knowing I'm not alone in this...." + (show)
@debmitchell101614

Oh my gosh!! I can't even describe the feeling of knowing I'm not alone in this. Thank you so much for sharing with me. I haven't thought about going back to a chiropractor because honestly the thought of being adjusted with how bad my body hurts right now does not sound good. It's good to know that it has helped for you.
Thanks again for sharing with me.

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My chiropractor and her partner (also Chiro) gave me homeopathic medicines - I saw them on an emergency basis 3-4 times. So they actually didn't do much in terms of adjusting (a few things here and there)......but they listened to me, believed me and they figured out what my body wanted/needed. So maybe I should clarify and say that homeopathy was the thing that helped - but I saw my chiropractor for it. Best of luck and healing!

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debmitchell101614 | @debmitchell101614 | Jan 26, 2022
In reply to @jgerth "My chiropractor and her partner (also Chiro) gave me homeopathic medicines - I saw them on..." + (show)
@jgerth

My chiropractor and her partner (also Chiro) gave me homeopathic medicines - I saw them on an emergency basis 3-4 times. So they actually didn't do much in terms of adjusting (a few things here and there)......but they listened to me, believed me and they figured out what my body wanted/needed. So maybe I should clarify and say that homeopathy was the thing that helped - but I saw my chiropractor for it. Best of luck and healing!

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Oh thank you for clarifying, I will definitely make an appointment to talk to her.

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pacer3702 | @pacer3702 | Jan 26, 2022
In reply to @ninette "I found this information about Novavax, the interesting part is where they say it could work..." + (show)
@ninette

I found this information about Novavax, the interesting part is where they say it could work well for people who are allergic to certain ingredients in MRDNA vaccines (Pfizer and Moderna) such as polyethylene glycol, which can cause neuropathy flares. We just heard that in Belgium people with a compromised immune system will get a 4th vaccine (booster) soon, so I hope I can try Novavax then, because with Moderna my symptoms got worse after every injection. https://www.nebraskamed.com/COVID/moths-and-tree-bark-how-the-novavax-vaccine-works

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Thank you for this helpful information. My concern is that Noravax would still result in production of antibodies to the spike protein. There is at least one published study reporting that such antibodies can crossreact with nerve tissue. That would explain why I developed an autoimmune-mediated peripheral neuropathy after the vaccine. They need to design a vaccine that does not produce the complete spike protein to make it safer for people like us.

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mdd | @mdd | Jan 26, 2022
In reply to @kimegraves "I had very similar symptoms after the Moderna vaccine and it was a challenge to finally..." + (show)
@kimegraves

I had very similar symptoms after the Moderna vaccine and it was a challenge to finally receive a diagnosis. It took over a year and many providers before I received
a diagnosis and started treatment. Stay strong and continue to read, ask questions and continue seeing providers until you are satisfied. The vaccine is still fairly new and many providers are not familiar with all the side effects that have been seen.

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I am also curious to hear what your diagnosis is? and treatment?

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grannyzoo | @grannyzoo | Jan 27, 2022

Please make sure you are seeing the correct kind of pain management doctor. An “Anesthesiologist/ pain management” doctor. Do not use just a “pain management “ doctor. I used a doctor that is part of a teaching college. There’s more out there than shots that do not work. I got a wonderful neurologist through the college, too. Get sleep. Follow a healthy diet. Lose weight.

Look into devices that could help you. I used a Sprint Neurostimulator for 60 days. It helped. I’m currently praying that the Boston Scientific stimulator works in my back.

Just get the correct type of doctor.

Best wishes.

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dhamil | @dhamil | Jan 27, 2022

I have SFN resulting from the first dose of Pfizer. It’s been 9 months and now is getting worse. My Doctor suggested I take 25mg prednisone for 14 days to see if it will calm it down. He’s not convinced it will work but said you never know. I’m concerned I may have withdraw side effects from stopping all at once. I don’t recall seeing any posts of anyone being prescribed steroids. Has anyone been given this dose of prednisone without a taper and did you do ok just stopping it? Or has anyone been given a different dose of prednisone or other types of steroids and was it helpful with your symptoms and if so did it last? From what I’ve read prednisone is great but has more side effects then others steroids and some people can have a hard time stopping with no taper after just one week?

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