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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I have neuropathy still - year later!
I started having neuropathy throughout my entire body after 2 months of receiving 2 doses of the Phizer vaccine.

My first odd symptoms right after the vaccination was chest pain, and shortness of breath.
October 25th the real scary stuff stated! I had one leg during the night go completely dead to the point I woke in terrible pain as if my circulation was cut off. October 30th while mowing my lawn I started to have extreme wrist pain, and shortness of breath. It was so terrible I had to stop mowing my lawn (never had wrists pain prior) October 31st after the extreme wrist pain, I woke the next morning with both my hands and forearms so swollen I couldn’t close my hands to open my bedroom door. I couldn’t use my hands!
Super overwhelmed, in terrible pain, and absolutely confused what was happening, I tried to nap. While Napping my left arm went completely dead, so I I thought “am I having a heart attack?” I decided I better go to the ER right away.

The ER diagnosed me with carpal tunnel syndrome. Mind you, I’ve never had any symptoms of carpal tunnel my entire life. This diagnosis frustrates me to this day! To have a sudden onset of carpal tunnel in both hands overnight is absolutely not “carpal tunnel” Not knowing any better, I accepted the diagnosis. I was referred to a carpal tunnel specialist and saw him the next day. He tapped my wrists, my hands flung up and said “oh yeah you have carpal tunnel” “what would you like to do?” “Surgery or steroid injections?” me being the hard worker I am said “steroid shots” “I got to get back to work!”

A week later I started to get neuropathy in my my legs. I couldn’t find anything online about carpal tunnel causing numbness in legs or feet, so I called the carpal tunnel Dr to ask why I would have numbness in my legs and toes. He said “oh that’s not carpal tunnel” and I was then referred to a spine specialist.
The spine specialist ordered a MRI and the MRI came back fine. The Drs were confused why I would be having neuropathy on my upper body and lower body simultaneously.
The two specialists referred me to a nerve specialist whom confirmed with nerve test that I didn’t have carpal tunnel or a neck/back injury causing these new onset symptoms.
The 3 specialists decided they think it was a reaction to the vaccine and thought no Drs in my area could even help me. They called me and said I needed to go to ER in Salt Lake City right away!

The ER Dr completely in salt lake dismissed the Drs, he literally laughed and asked me “are they even Drs?, “this isn’t from the vaccine” he was completely rude and certainly unprofessional!
He did think I had enough neuropathy issues he referred me to a neurologist.

(After months of thinking I’m dying, I was finally able to see the neurologist)

The neurologist tested me for MS, and my Brain scan came back normal. Not even one lesion. Confused, he then referred me to a muscular neurologist who was also confused and couldn’t seem to find anything to explain my symptoms. The muscular neurologist then referred me to a rheumatologist, to test for auto immune disease. I have a positive ANA, ANA Hep 2 substrate, and elevated white blood cell (WBC). However all the specific auto immune tests are normal. The rheumatologist seemed stumped too! She did say “it could be from the vaccination or an infection” not very confident or satisfied with her answer, I requested to be tested for the possible “infections” HIV, Hepatitis, etc… all came back normal!

I was at square one again! No help, no answers, no certainty! Feeling like I’m dying, do I have cancer? Are they missing something? I’ve been miserable for months and no one has answers??! I feel and felt so scared and alone.

I wanted a second opinion and found a rheumatologist whom reviewed all the MANY tests and is confident this joint pain, fatigue, shortness of breath, numbness, tingling has been caused from the vaccination!
Finally a Dr who gave me a definite answer. He however said “I should get better “ hoping I would and trying to stay positive, I recently had a setback and been dealing with both my hands going to sleep every night, waking with numbness and pain. The muscle spasms in my arms and legs are super strong again! I am now seeing a new neurologist and hope he can get me to the right Dr or test for CIDP possibly to ensure that I don’t get more nerve damage from this vaccination!

It seems like no Drs have no answers, I’m exhausted from the extreme amount of tests with no real answers for my future or what can I do to get better? Is there anything to help?
Our government needs to step up and step in! The news needs to report on how many people are debilitated from this and stop scaring people to get vaccinated!

My own life has been dramatically changed by the decision to get vaccinated. I haven’t been able to work since November 9th of last year!

I personally would have rather contracted Covid vs making the decision to get the vaccination! At least then if I ended up with the same side effects I wouldn’t be punishing myself for causing myself to go through this debilitating pain and now DEPRESSION to the point I am selling my house and unsure how to support myself and what my future has to offer!

We need answers now!!

REPLY

All medical procedures and medications come with some risks. Vaccines are no exception. Vaccines in general seem to be associated with various side effects at a rate that is generally in the ballpark of a few cases per million doses. Thus everyone must always weigh the risks of medical-induced problems (side effects) vs. the problems that are being treated.

As I understand it, the potential risks from covid (including "long covid" problems that can occur even if the covid infection is relatively mild) are far higher than the risks from the covid vaccines. There is no such thing as a risk-free option. Doing nothing has its own risks. The smart gambler will generally go with the lower comparative risk and I would like to think of myself as a smart gambler. I wish I didn't have to gamble on health at all, but that is simply not an option.

Bottom line: There is some evidence of a possible link between small-fiber neuropathy and covid vaccines, so that is part of the risks when rolling the dice. Here is a link to a PubMed article that addresses the connection.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8250971/

REPLY

I had a spinal stroke in 2018 which resulted in neuropathy (among other things) and it got worse after my 2 Moderna shots and the first booster. In fact the symptoms were more severe and lasted longer every time. Having said that, 6 weeks is not that long and the side effects of long Covid could be worse. I'm getting my second booster this week and my doctor suggested to give me just half a dose as it would probably work just as well and might have fewer/shorter lasting side effects. Did anyone else do this and if so, what were the results?

REPLY
@lorilee13

I have neuropathy still - year later!
I started having neuropathy throughout my entire body after 2 months of receiving 2 doses of the Phizer vaccine.

My first odd symptoms right after the vaccination was chest pain, and shortness of breath.
October 25th the real scary stuff stated! I had one leg during the night go completely dead to the point I woke in terrible pain as if my circulation was cut off. October 30th while mowing my lawn I started to have extreme wrist pain, and shortness of breath. It was so terrible I had to stop mowing my lawn (never had wrists pain prior) October 31st after the extreme wrist pain, I woke the next morning with both my hands and forearms so swollen I couldn’t close my hands to open my bedroom door. I couldn’t use my hands!
Super overwhelmed, in terrible pain, and absolutely confused what was happening, I tried to nap. While Napping my left arm went completely dead, so I I thought “am I having a heart attack?” I decided I better go to the ER right away.

The ER diagnosed me with carpal tunnel syndrome. Mind you, I’ve never had any symptoms of carpal tunnel my entire life. This diagnosis frustrates me to this day! To have a sudden onset of carpal tunnel in both hands overnight is absolutely not “carpal tunnel” Not knowing any better, I accepted the diagnosis. I was referred to a carpal tunnel specialist and saw him the next day. He tapped my wrists, my hands flung up and said “oh yeah you have carpal tunnel” “what would you like to do?” “Surgery or steroid injections?” me being the hard worker I am said “steroid shots” “I got to get back to work!”

A week later I started to get neuropathy in my my legs. I couldn’t find anything online about carpal tunnel causing numbness in legs or feet, so I called the carpal tunnel Dr to ask why I would have numbness in my legs and toes. He said “oh that’s not carpal tunnel” and I was then referred to a spine specialist.
The spine specialist ordered a MRI and the MRI came back fine. The Drs were confused why I would be having neuropathy on my upper body and lower body simultaneously.
The two specialists referred me to a nerve specialist whom confirmed with nerve test that I didn’t have carpal tunnel or a neck/back injury causing these new onset symptoms.
The 3 specialists decided they think it was a reaction to the vaccine and thought no Drs in my area could even help me. They called me and said I needed to go to ER in Salt Lake City right away!

The ER Dr completely in salt lake dismissed the Drs, he literally laughed and asked me “are they even Drs?, “this isn’t from the vaccine” he was completely rude and certainly unprofessional!
He did think I had enough neuropathy issues he referred me to a neurologist.

(After months of thinking I’m dying, I was finally able to see the neurologist)

The neurologist tested me for MS, and my Brain scan came back normal. Not even one lesion. Confused, he then referred me to a muscular neurologist who was also confused and couldn’t seem to find anything to explain my symptoms. The muscular neurologist then referred me to a rheumatologist, to test for auto immune disease. I have a positive ANA, ANA Hep 2 substrate, and elevated white blood cell (WBC). However all the specific auto immune tests are normal. The rheumatologist seemed stumped too! She did say “it could be from the vaccination or an infection” not very confident or satisfied with her answer, I requested to be tested for the possible “infections” HIV, Hepatitis, etc… all came back normal!

I was at square one again! No help, no answers, no certainty! Feeling like I’m dying, do I have cancer? Are they missing something? I’ve been miserable for months and no one has answers??! I feel and felt so scared and alone.

I wanted a second opinion and found a rheumatologist whom reviewed all the MANY tests and is confident this joint pain, fatigue, shortness of breath, numbness, tingling has been caused from the vaccination!
Finally a Dr who gave me a definite answer. He however said “I should get better “ hoping I would and trying to stay positive, I recently had a setback and been dealing with both my hands going to sleep every night, waking with numbness and pain. The muscle spasms in my arms and legs are super strong again! I am now seeing a new neurologist and hope he can get me to the right Dr or test for CIDP possibly to ensure that I don’t get more nerve damage from this vaccination!

It seems like no Drs have no answers, I’m exhausted from the extreme amount of tests with no real answers for my future or what can I do to get better? Is there anything to help?
Our government needs to step up and step in! The news needs to report on how many people are debilitated from this and stop scaring people to get vaccinated!

My own life has been dramatically changed by the decision to get vaccinated. I haven’t been able to work since November 9th of last year!

I personally would have rather contracted Covid vs making the decision to get the vaccination! At least then if I ended up with the same side effects I wouldn’t be punishing myself for causing myself to go through this debilitating pain and now DEPRESSION to the point I am selling my house and unsure how to support myself and what my future has to offer!

We need answers now!!

Jump to this post

Your story seems very similar to mine. After receiving my 4th covid vaccination in 1/2022 I started having neuropathies in my hands, legs and feet. My local GP told me it was probably a vaccine reaction, the local neurologist said the same thing. I had a million tests and scans, everything normal. And I was told I had carpal tunnel too....well, I already knew that and this wasn't carpal tunnel. My EMG was normal, twice. I eventually saw a neurologist up at University of Colorado Hospital after waiting months for an appointment. She told me she has many patients, post covid and post covid vaccination presenting with the same symptoms. She said normal EKGs rule out CIDP. She said that this is probably an auto immune reaction, which could happen with any vaccine apparently. She said it should eventually get better. Some people are treated with IVIG and/or steroids, which as an RN, I can tell you come with their own set of problems. People are also treated with Gabapentin or Lyrica, amitriptyline and other medications. I am older so I haven't done any of that stuff except the Gabapentin which did not help me.I have good days and bad days. I have taken a zillion supplements to no avail. The best advice I have given to myself is to stop googling this so much and definitely stay away from all the conspiracy and nut job websites. I find if I keep my stress level low and get a good night's sleep, that helps more than anything. I am still glad I received the vaccine because this could have happened with a covid infection too accompanied by all the terrible sequelae that covid brings. Don't beat yourself up over this. We did the best thing and the right thing with the information we had at the time. I was so angry with myself when this happened to me. I just wanted to turn back time and NOT get the vaccine, but of course that cannot be done. And that being said, I went ahead and got a flu vaccine and the Omicron booster without any increase of problems. If you went to Salt Lake, maybe you are close to Denver. I was happy with my neurologist at UCH Cherry Creek Clinic in Denver. She validated me and we are working with the presumptive diagnosis of Small Fiber Neuropathy. In no way am I making a diagnosis for you, or giving any medical advice, but maybe there is a neurologist out there who could come up with a treatment plan for you. I wish you good health and the best of luck.

REPLY
@gaylen

All medical procedures and medications come with some risks. Vaccines are no exception. Vaccines in general seem to be associated with various side effects at a rate that is generally in the ballpark of a few cases per million doses. Thus everyone must always weigh the risks of medical-induced problems (side effects) vs. the problems that are being treated.

As I understand it, the potential risks from covid (including "long covid" problems that can occur even if the covid infection is relatively mild) are far higher than the risks from the covid vaccines. There is no such thing as a risk-free option. Doing nothing has its own risks. The smart gambler will generally go with the lower comparative risk and I would like to think of myself as a smart gambler. I wish I didn't have to gamble on health at all, but that is simply not an option.

Bottom line: There is some evidence of a possible link between small-fiber neuropathy and covid vaccines, so that is part of the risks when rolling the dice. Here is a link to a PubMed article that addresses the connection.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8250971/

Jump to this post

While I agree with absolutely everything you say (there are risks with everything), what we need from the medical community is an acknowledgement that the vaccine is hurting some people and some strategies and help for those who are vaccine injured. We were all told this was the "safest route" - getting vaccinated will help save you and the community. We all signed up for the vaccine to help stop the spread of covid - none of us signed up to have neuropathy for the rest of our lives. The connection between neuropathy and the vaccine was denied and covered up until so many people were suffering that it couldn't be hidden anymore. That is tragic. If this is the case, we need to stop pushing the vaccine until they figure out what is wrong with it and fix it. My biggest complaint with all of this is the initial denial that the vaccine could do harm when so many people have been suffering.

REPLY
@jgerth

While I agree with absolutely everything you say (there are risks with everything), what we need from the medical community is an acknowledgement that the vaccine is hurting some people and some strategies and help for those who are vaccine injured. We were all told this was the "safest route" - getting vaccinated will help save you and the community. We all signed up for the vaccine to help stop the spread of covid - none of us signed up to have neuropathy for the rest of our lives. The connection between neuropathy and the vaccine was denied and covered up until so many people were suffering that it couldn't be hidden anymore. That is tragic. If this is the case, we need to stop pushing the vaccine until they figure out what is wrong with it and fix it. My biggest complaint with all of this is the initial denial that the vaccine could do harm when so many people have been suffering.

Jump to this post

Perfectly Said!

REPLY
@lorilee13

I have neuropathy still - year later!
I started having neuropathy throughout my entire body after 2 months of receiving 2 doses of the Phizer vaccine.

My first odd symptoms right after the vaccination was chest pain, and shortness of breath.
October 25th the real scary stuff stated! I had one leg during the night go completely dead to the point I woke in terrible pain as if my circulation was cut off. October 30th while mowing my lawn I started to have extreme wrist pain, and shortness of breath. It was so terrible I had to stop mowing my lawn (never had wrists pain prior) October 31st after the extreme wrist pain, I woke the next morning with both my hands and forearms so swollen I couldn’t close my hands to open my bedroom door. I couldn’t use my hands!
Super overwhelmed, in terrible pain, and absolutely confused what was happening, I tried to nap. While Napping my left arm went completely dead, so I I thought “am I having a heart attack?” I decided I better go to the ER right away.

The ER diagnosed me with carpal tunnel syndrome. Mind you, I’ve never had any symptoms of carpal tunnel my entire life. This diagnosis frustrates me to this day! To have a sudden onset of carpal tunnel in both hands overnight is absolutely not “carpal tunnel” Not knowing any better, I accepted the diagnosis. I was referred to a carpal tunnel specialist and saw him the next day. He tapped my wrists, my hands flung up and said “oh yeah you have carpal tunnel” “what would you like to do?” “Surgery or steroid injections?” me being the hard worker I am said “steroid shots” “I got to get back to work!”

A week later I started to get neuropathy in my my legs. I couldn’t find anything online about carpal tunnel causing numbness in legs or feet, so I called the carpal tunnel Dr to ask why I would have numbness in my legs and toes. He said “oh that’s not carpal tunnel” and I was then referred to a spine specialist.
The spine specialist ordered a MRI and the MRI came back fine. The Drs were confused why I would be having neuropathy on my upper body and lower body simultaneously.
The two specialists referred me to a nerve specialist whom confirmed with nerve test that I didn’t have carpal tunnel or a neck/back injury causing these new onset symptoms.
The 3 specialists decided they think it was a reaction to the vaccine and thought no Drs in my area could even help me. They called me and said I needed to go to ER in Salt Lake City right away!

The ER Dr completely in salt lake dismissed the Drs, he literally laughed and asked me “are they even Drs?, “this isn’t from the vaccine” he was completely rude and certainly unprofessional!
He did think I had enough neuropathy issues he referred me to a neurologist.

(After months of thinking I’m dying, I was finally able to see the neurologist)

The neurologist tested me for MS, and my Brain scan came back normal. Not even one lesion. Confused, he then referred me to a muscular neurologist who was also confused and couldn’t seem to find anything to explain my symptoms. The muscular neurologist then referred me to a rheumatologist, to test for auto immune disease. I have a positive ANA, ANA Hep 2 substrate, and elevated white blood cell (WBC). However all the specific auto immune tests are normal. The rheumatologist seemed stumped too! She did say “it could be from the vaccination or an infection” not very confident or satisfied with her answer, I requested to be tested for the possible “infections” HIV, Hepatitis, etc… all came back normal!

I was at square one again! No help, no answers, no certainty! Feeling like I’m dying, do I have cancer? Are they missing something? I’ve been miserable for months and no one has answers??! I feel and felt so scared and alone.

I wanted a second opinion and found a rheumatologist whom reviewed all the MANY tests and is confident this joint pain, fatigue, shortness of breath, numbness, tingling has been caused from the vaccination!
Finally a Dr who gave me a definite answer. He however said “I should get better “ hoping I would and trying to stay positive, I recently had a setback and been dealing with both my hands going to sleep every night, waking with numbness and pain. The muscle spasms in my arms and legs are super strong again! I am now seeing a new neurologist and hope he can get me to the right Dr or test for CIDP possibly to ensure that I don’t get more nerve damage from this vaccination!

It seems like no Drs have no answers, I’m exhausted from the extreme amount of tests with no real answers for my future or what can I do to get better? Is there anything to help?
Our government needs to step up and step in! The news needs to report on how many people are debilitated from this and stop scaring people to get vaccinated!

My own life has been dramatically changed by the decision to get vaccinated. I haven’t been able to work since November 9th of last year!

I personally would have rather contracted Covid vs making the decision to get the vaccination! At least then if I ended up with the same side effects I wouldn’t be punishing myself for causing myself to go through this debilitating pain and now DEPRESSION to the point I am selling my house and unsure how to support myself and what my future has to offer!

We need answers now!!

Jump to this post

This site has good information. You are not alone! https://react19.org/

REPLY
@lorikalodimos

Your words are hurting people. My daughter is suffering from a vaccine injury. We have a family of health providers we are all vaccinated- but this Did and Does happen!!! Please let the injured speak for them selves toward their own experience.

Jump to this post

Absolutely Correct!

People who haven’t felt it or have a loved one suffering should not be so closed minded!

I am also suffering every day after the vaccination. Just got blood work done today for Peripheral Neuropathy and a biopsy scheduled next Monday.

I was healthy and no issues with carpal tunnel or neuropathy until 2 months after I was vaccinated!

I wish you and family the best! Hopefully we get better or get some real answers soon and the “haters” will start believing!

REPLY
@ninette

I had a spinal stroke in 2018 which resulted in neuropathy (among other things) and it got worse after my 2 Moderna shots and the first booster. In fact the symptoms were more severe and lasted longer every time. Having said that, 6 weeks is not that long and the side effects of long Covid could be worse. I'm getting my second booster this week and my doctor suggested to give me just half a dose as it would probably work just as well and might have fewer/shorter lasting side effects. Did anyone else do this and if so, what were the results?

Jump to this post

Hello @ninette. I am so sorry to hear of your spinal stroke and resulting neuropathy. Because you are interested in connecting with members on the topic of covid vaccines, you will notice that I have moved your post into an existing discussion on this topic which you can find here:
- COVID vaccines and neuropathy: https://connect.mayoclinic.org/discussion/covid-vaccines-and-neuropathy/

I am not sure if you are aware of this, however, the monovalent Moderna covid booster was actually designed as half doses in comparison to a full dose Pfizer. Perhaps the half dose of the bivalent booster is the same?

REPLY
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