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 got the Moderna vaccine for covid as soon as I could, and the second shot, and the booster. I've had no bad reactions except muscle soreness all over for one day. It never occurred to me that a vaccine that builds my immune system so it can fight viruses would have any adverse effect on my nervous system. We know all too well that covid has an adverse effect on the nervous system and many other parts of the body. Covid killed a friend of mine – a big healthy guy – no one in Washington DC would ever try to knock him down but a tiny virus that we can't even see got into his mouth, down his airway, into his lung, and rapidly flourished, like the plant in Little Shop of Horrors, it grew and grew until no air could get into his lungs – not even a ventilator could shove air into his lungs – he suffocated, helpless, while his family watched through a plastic curtain. Covid is a horrible little gift from China to the World. Peggy

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I wonder if Novavax would be better for us as a vaccine and/or a booster. They will start using it in Belgium soon for people who had bad reactions to Moderna or Pfizer (Novavax belongs to another group of vaccines), or people who couldn't take the vaccine so far because of allergies or other medical reasons.

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Yes I did unfortunately. I had the Pfizer booster and now have neuropathy in both my feet. I did not have a prior health issues with neuropathy.

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@cyp238ress

Is anyone's neurologist trying to do something to calm the immune response? Mine is working to get IV steroid treatment approved. Not sure it will do squat, but one has to try SOMETHING. My 30 year career is literally about to end and me quit working in my 50's (well before I had hoped to) because of my apparent immune response to the vaccine.

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Have you requested FMLA leave from your employer? FMLA provides 12 weeks of job protection while you recover. My 30-year career was also in jeopardy. My nerve damage/symptoms from an autoimmune reaction to the vaccine are slowly improving to the point that I'm now able to return to work. Anti-inflammatory treatment might have been worthwhile for me at the peak of my symptoms, but I couldn't get an appointment with a neurologist, and when I did, he couldn't recognize my underlying problem due to the newness of the vaccines.

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Yes, mine has gotten worse.

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@karinlayman27

Yes I did unfortunately. I had the Pfizer booster and now have neuropathy in both my feet. I did not have a prior health issues with neuropathy.

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Check out React19.org – patient led research for neuropathy from vax

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Hello, I'm not sure if this is allowable or not, but I wanted to share my experience and see if anyone else has experienced this because I am at a loss and can find no answers/help anywhere.
I am a 55 year old female who has a history of fibromyalgia for 15+ years but was not taking any medication for it. I was living an active life other than the normal pain from fibromyalgia that I had gotten used to and accepted. I was required to get the covid 19 vaccine (Pfizer) in January 2021 in order to keep my job because I work for a nursing home company (even though I work from home). 5 days after the first dose of the vaccine I started having a vibration (feeling of cell phone vibrating) in my right hip. I thought it was a pinched nerve and after about a week or so when it didn't go away, I went to see a chiropractor. While being treated by the chiropractor, it came time for my second dose of the vaccine. Not thinking my issue was related to the vaccine, I received the second dose of the vaccine (again in order to keep my job). After the 2nd dose of the vaccine, I started getting numbness and tingling in my feet that did not go away and my entire body also vibrated every time I looked down.
Over the past year the numbness, tingling, vibration has spread to my entire body (I even feel it in my face and head now). It is constant and does not go away. My balance is very bad where I walk with a walker or cane when going out and I feel cold on the inside down to the bone. I also am now having stomach issues for the past few months. I have had 9 MRI's, a lumbar puncture, a nerve conduction study done on all four extremities and all of the normal lab workups. The lumbar puncture showed increased protein in my central nervous system, but everything else is not showing anything that would cause my symptoms. I have been to 2 different MS clinics and to 6 different neurologists and have yet to get a diagnosis or a treatment that works.
I work on a computer for a living and was off work due to my hands and fingers being numb and tingling constantly that made it very difficult work. When my FMLA ran out and even though my doctor stated that I was not able to work, my employer (who required me to get the vaccine to keep my job) on 11/1/21 denied my personal leave and stated I would be terminated on 11/5/21 if I did not return to work full time by then. I did not want to lose my job and honestly couldn't afford to lose my job, so I asked the doctor to let me try to return to work. I am currently working but having extreme difficulty and not sure that I'm going to be able to continue much longer. My doctors are doing a skin biopsy on 1/31/21 but have said if this does not show anything they do not know what else to do. Based on my reflexes they state they know something is going on, but they don't know what it is or how to treat it. I am desperate and am putting all of this out here to see if there is anyone else dealing with this and if so, what they were diagnosed with and how and if their treatment worked.
Any help anyone can offer would be greatly appreciated. I have not been able to get any medical or legal help from anyone with this and I don't know where to turn.
Thank you.

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@sprasatek

Check out React19.org – patient led research for neuropathy from vax

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Thank you for sharing this!

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@debmitchell101614

Hello, I'm not sure if this is allowable or not, but I wanted to share my experience and see if anyone else has experienced this because I am at a loss and can find no answers/help anywhere.
I am a 55 year old female who has a history of fibromyalgia for 15+ years but was not taking any medication for it. I was living an active life other than the normal pain from fibromyalgia that I had gotten used to and accepted. I was required to get the covid 19 vaccine (Pfizer) in January 2021 in order to keep my job because I work for a nursing home company (even though I work from home). 5 days after the first dose of the vaccine I started having a vibration (feeling of cell phone vibrating) in my right hip. I thought it was a pinched nerve and after about a week or so when it didn't go away, I went to see a chiropractor. While being treated by the chiropractor, it came time for my second dose of the vaccine. Not thinking my issue was related to the vaccine, I received the second dose of the vaccine (again in order to keep my job). After the 2nd dose of the vaccine, I started getting numbness and tingling in my feet that did not go away and my entire body also vibrated every time I looked down.
Over the past year the numbness, tingling, vibration has spread to my entire body (I even feel it in my face and head now). It is constant and does not go away. My balance is very bad where I walk with a walker or cane when going out and I feel cold on the inside down to the bone. I also am now having stomach issues for the past few months. I have had 9 MRI's, a lumbar puncture, a nerve conduction study done on all four extremities and all of the normal lab workups. The lumbar puncture showed increased protein in my central nervous system, but everything else is not showing anything that would cause my symptoms. I have been to 2 different MS clinics and to 6 different neurologists and have yet to get a diagnosis or a treatment that works.
I work on a computer for a living and was off work due to my hands and fingers being numb and tingling constantly that made it very difficult work. When my FMLA ran out and even though my doctor stated that I was not able to work, my employer (who required me to get the vaccine to keep my job) on 11/1/21 denied my personal leave and stated I would be terminated on 11/5/21 if I did not return to work full time by then. I did not want to lose my job and honestly couldn't afford to lose my job, so I asked the doctor to let me try to return to work. I am currently working but having extreme difficulty and not sure that I'm going to be able to continue much longer. My doctors are doing a skin biopsy on 1/31/21 but have said if this does not show anything they do not know what else to do. Based on my reflexes they state they know something is going on, but they don't know what it is or how to treat it. I am desperate and am putting all of this out here to see if there is anyone else dealing with this and if so, what they were diagnosed with and how and if their treatment worked.
Any help anyone can offer would be greatly appreciated. I have not been able to get any medical or legal help from anyone with this and I don't know where to turn.
Thank you.

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Your situation is terrible! I'm so sorry this happened to you. There are many reports of similar vaccine-related internal vibration issues among the members of the Facebook group Neuro V Long-Haulers. I encourage you to join. Some are able to document an autoimmune, inflammatory response by sending a blood sample to CellTrend lab in Germany. They accept international shipments and provide instructions on their website. I'm hoping such documentation will help you to keep your job.

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@athenalee

Thank you for sharing this!

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You're welcome. I found this site by chance and thought it couldn't hurt. I'm glad there is a place people can talk about this kind of thing.

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@pacer3702

Your situation is terrible! I'm so sorry this happened to you. There are many reports of similar vaccine-related internal vibration issues among the members of the Facebook group Neuro V Long-Haulers. I encourage you to join. Some are able to document an autoimmune, inflammatory response by sending a blood sample to CellTrend lab in Germany. They accept international shipments and provide instructions on their website. I'm hoping such documentation will help you to keep your job.

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Thank you for the kind words and the information. I will check it out.

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@debmitchell101614

Hello, I'm not sure if this is allowable or not, but I wanted to share my experience and see if anyone else has experienced this because I am at a loss and can find no answers/help anywhere.
I am a 55 year old female who has a history of fibromyalgia for 15+ years but was not taking any medication for it. I was living an active life other than the normal pain from fibromyalgia that I had gotten used to and accepted. I was required to get the covid 19 vaccine (Pfizer) in January 2021 in order to keep my job because I work for a nursing home company (even though I work from home). 5 days after the first dose of the vaccine I started having a vibration (feeling of cell phone vibrating) in my right hip. I thought it was a pinched nerve and after about a week or so when it didn't go away, I went to see a chiropractor. While being treated by the chiropractor, it came time for my second dose of the vaccine. Not thinking my issue was related to the vaccine, I received the second dose of the vaccine (again in order to keep my job). After the 2nd dose of the vaccine, I started getting numbness and tingling in my feet that did not go away and my entire body also vibrated every time I looked down.
Over the past year the numbness, tingling, vibration has spread to my entire body (I even feel it in my face and head now). It is constant and does not go away. My balance is very bad where I walk with a walker or cane when going out and I feel cold on the inside down to the bone. I also am now having stomach issues for the past few months. I have had 9 MRI's, a lumbar puncture, a nerve conduction study done on all four extremities and all of the normal lab workups. The lumbar puncture showed increased protein in my central nervous system, but everything else is not showing anything that would cause my symptoms. I have been to 2 different MS clinics and to 6 different neurologists and have yet to get a diagnosis or a treatment that works.
I work on a computer for a living and was off work due to my hands and fingers being numb and tingling constantly that made it very difficult work. When my FMLA ran out and even though my doctor stated that I was not able to work, my employer (who required me to get the vaccine to keep my job) on 11/1/21 denied my personal leave and stated I would be terminated on 11/5/21 if I did not return to work full time by then. I did not want to lose my job and honestly couldn't afford to lose my job, so I asked the doctor to let me try to return to work. I am currently working but having extreme difficulty and not sure that I'm going to be able to continue much longer. My doctors are doing a skin biopsy on 1/31/21 but have said if this does not show anything they do not know what else to do. Based on my reflexes they state they know something is going on, but they don't know what it is or how to treat it. I am desperate and am putting all of this out here to see if there is anyone else dealing with this and if so, what they were diagnosed with and how and if their treatment worked.
Any help anyone can offer would be greatly appreciated. I have not been able to get any medical or legal help from anyone with this and I don't know where to turn.
Thank you.

Jump to this post

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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