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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@mrsgeorgiou

Hi.. hope everyone here is continuing to heal. I had my first dose Pfizer 7 weeks ago and developed neuropathy (along w other side effects…random chills for weeks, loss of appetite, foggy, nausea) about 30min after and still haven’t been the same since. I’m due for my 2nd shot and really scared. Getting mixed reviews from doctors. But I’m other trapped in Australia from the USA entire lockdown and so desperate to get out and back to my family. I don’t want to make a stupid decision based on that. Has anyone experienced neuropathy for the first time from vax? If so did you have second? Thank you 🙏🏼

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Hi @mrsgeorgiou - I hope you are doing well. I am late to find this group, but want to share my experience. Prior to the vaccine, I was a healthy 31-year-old with no prior health concerns. I received the first dose of Moderna and experienced an onset of neuropathy symptoms within 5 days. My doctor still recommended the second dose, and from there, my symptoms became about 100x worse. I am still struggling 9+ months later. My mom received only one dose of Pfizer and had exactly the same experience. Thankfully, she knew it would not be safe to get the second dose after seeing my experience. We are both still suffering, although it does appear that my symptoms are worse than hers. I hope this is helpful and you are doing well regardless of how you decided to move forward in your own situation.

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@erin2288

I am grateful to have found this group, as I have been suffering from neuropathy-like symptoms and other ailments for 9+ months after the vaccine. I am disheartened to see that so many of us are experiencing these adverse reactions and receiving little help from the medical community.

Prior to the vaccine, I was a healthy, active, 31-year-old with no prior medical conditions. I get the flu shot annually along with all other recommended vaccines and have never had an issue. I received the first dose of Moderna at the end of March 2021. A few days later, I developed an intense prickling/pins and needles feeling in my arm where I received the shot. Eventually, the pain and tingling moved into my leg and then up into my neck, face, and mouth. At this point, I consulted a doctor who recommended that I move forward with the second dose. He diagnosed me with paresthesias from the vaccine but said that it was not serious and should subside in a few weeks. He said he would report my reaction to VAERS, but did not actually do so until 9 months later when I followed up with him to ask for my case number.

I received the second dose as scheduled at the end of April 2021 and from there my symptoms exploded: burning, tingling, numbness, distorted temperature sensations on my skin, internal vibrating/buzzing, vision disturbances, sensitivity to light, and tinnitus. Around four months post-vaccine, I also developed muscle twitching/spasms all over my body (face, eyes, back, arms, legs, and in my core - almost like my organs themselves are twitching), along with ear pressure/popping. These symptoms have all persisted and migrate throughout my body.

My mother received one dose of Pfizer in April and has exactly the same paresthesia and muscle spasm symptoms (her muscle spasms also began around 4 months post-vaccine). Thankfully, we realized that the vaccine was not safe for her in time for her to refuse the second dose. Like me, she is healthy and active with no prior health concerns.

I have now seen two neurologists, an immunologist, and a rheumatologist who all concluded that these symptoms are a direct result of the vaccine. In addition, they each acknowledged that they have seen many patients like me and my mom; however, they do not know how to help us.

Over the time period of my vaccine injury, I have developed antibodies consistent with autoimmune diseases such as lupus and thyroid disease. Conditions that I did not have prior to the vaccine and do not run in my family. This vaccine has truly been life-altering for me. I am now facing a life-long illness after trusting that this vaccine was safe, had no long-term side effects, and would protect my community.

My mom and I would like to be part of a study for these types of adverse reactions. We are currently on a waitlist for a study with the NIH, but have not heard from them since the fall. Our local university research hospital declined to study our case. Could someone please direct me to current studies that we can join so that people with our reaction can receive support and eventually be screened before receiving these life-altering vaccines?

My heart truly goes out to all of you here. I hope we can find healing in this new year.

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My symptoms are almost the exact same including the symptoms similar to lupus and thyroid issues. No issues like this at all before.

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@erin2288

I am grateful to have found this group, as I have been suffering from neuropathy-like symptoms and other ailments for 9+ months after the vaccine. I am disheartened to see that so many of us are experiencing these adverse reactions and receiving little help from the medical community.

Prior to the vaccine, I was a healthy, active, 31-year-old with no prior medical conditions. I get the flu shot annually along with all other recommended vaccines and have never had an issue. I received the first dose of Moderna at the end of March 2021. A few days later, I developed an intense prickling/pins and needles feeling in my arm where I received the shot. Eventually, the pain and tingling moved into my leg and then up into my neck, face, and mouth. At this point, I consulted a doctor who recommended that I move forward with the second dose. He diagnosed me with paresthesias from the vaccine but said that it was not serious and should subside in a few weeks. He said he would report my reaction to VAERS, but did not actually do so until 9 months later when I followed up with him to ask for my case number.

I received the second dose as scheduled at the end of April 2021 and from there my symptoms exploded: burning, tingling, numbness, distorted temperature sensations on my skin, internal vibrating/buzzing, vision disturbances, sensitivity to light, and tinnitus. Around four months post-vaccine, I also developed muscle twitching/spasms all over my body (face, eyes, back, arms, legs, and in my core - almost like my organs themselves are twitching), along with ear pressure/popping. These symptoms have all persisted and migrate throughout my body.

My mother received one dose of Pfizer in April and has exactly the same paresthesia and muscle spasm symptoms (her muscle spasms also began around 4 months post-vaccine). Thankfully, we realized that the vaccine was not safe for her in time for her to refuse the second dose. Like me, she is healthy and active with no prior health concerns.

I have now seen two neurologists, an immunologist, and a rheumatologist who all concluded that these symptoms are a direct result of the vaccine. In addition, they each acknowledged that they have seen many patients like me and my mom; however, they do not know how to help us.

Over the time period of my vaccine injury, I have developed antibodies consistent with autoimmune diseases such as lupus and thyroid disease. Conditions that I did not have prior to the vaccine and do not run in my family. This vaccine has truly been life-altering for me. I am now facing a life-long illness after trusting that this vaccine was safe, had no long-term side effects, and would protect my community.

My mom and I would like to be part of a study for these types of adverse reactions. We are currently on a waitlist for a study with the NIH, but have not heard from them since the fall. Our local university research hospital declined to study our case. Could someone please direct me to current studies that we can join so that people with our reaction can receive support and eventually be screened before receiving these life-altering vaccines?

My heart truly goes out to all of you here. I hope we can find healing in this new year.

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I feel your anguish. I too have had a lot of the same after my Moderna vaccines last March and April. I too was an active healthy person, and yes, this has been life altering for me. I’m not sure where you are from, but where I live, only 51% of the population in our county has been vaccinated. I saw a neurologist 4 times and he refused to even consider that this was related to the vaccine or having Covid prior. Medicate for restless leg, then carpal tunnel as the inflammation spread to my wrists and elbows. I don’t think he saw many cases related, as the population of vaccinated is so small where I live. I did go onto the Moderna website and reported the side effects myself, as there was no chance this doctor was going to report anything. I’ve since gone back to my primary care nurse practitioner who is much more supportive and I feel more heard. I do realize there is nothing that can be done, no cure. Just try to manage as best as possible. So that’s my new goal for 2022. Get out of bed each morning and try to be positive. Stretch, go for a walk, eat healthy and be the best I can be and manage the pain and numbness with things I have found that help. CBD gummies at bedtime and foot cream with menthol and peppermint to help with the burning. It helps to know this isn’t all in my head and that others are dealing with the same. Glad to have found this group as well.

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I also since the booster getting tingling like shocks through my body at night I know it must be va vine that’s when all my problems started it I reported it never heard from anyone

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Mine also began after vaccine and terrible after booster and they try to force people to take it

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I have read that they now are developing new vaccines that work with the T-cells, not with fighting the spike proteins of the virus. Let's see if that would work for us. As it is, I'm not getting another Moderna booster.

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@amyd67

I feel your anguish. I too have had a lot of the same after my Moderna vaccines last March and April. I too was an active healthy person, and yes, this has been life altering for me. I’m not sure where you are from, but where I live, only 51% of the population in our county has been vaccinated. I saw a neurologist 4 times and he refused to even consider that this was related to the vaccine or having Covid prior. Medicate for restless leg, then carpal tunnel as the inflammation spread to my wrists and elbows. I don’t think he saw many cases related, as the population of vaccinated is so small where I live. I did go onto the Moderna website and reported the side effects myself, as there was no chance this doctor was going to report anything. I’ve since gone back to my primary care nurse practitioner who is much more supportive and I feel more heard. I do realize there is nothing that can be done, no cure. Just try to manage as best as possible. So that’s my new goal for 2022. Get out of bed each morning and try to be positive. Stretch, go for a walk, eat healthy and be the best I can be and manage the pain and numbness with things I have found that help. CBD gummies at bedtime and foot cream with menthol and peppermint to help with the burning. It helps to know this isn’t all in my head and that others are dealing with the same. Glad to have found this group as well.

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Don’t forget your vitamins, especially vitamin B complex!

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I had idiopathic SFN for 20+ years prior to getting vaccinated. I had no adverse reaction to the first Pfizer dose, but exactly three weeks after the second dose, an intense burning and increase in fasciculations occurred and has not abated for 11 months now. It is disturbing to read about so many people on this board having problems (and presumably many others in other forums) and yet you hear nothing about it in the media whatsoever. People deserve to have all the information in hand so that they can make informed decisions about their own health. I think it would be hard for anyone to dispute that.

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Hello everyone. I am reading your stories and convinced their absolutely has to be severe side effects like this from the Covid vaccinations! I had my 2nd Moderna vaccine on May 24th of last year and 2 1/2 months later I developed numbness on my right side from my buttocks down thru my foot! I have had this for 5 months now! Never experienced anything like this before. I am a Diabetic, however, it is interesting that this neuropathy and numbness developed shortly after getting the vaccine. I also got sick after vaccine number two with body aches, chills and 102.5 fever. I am really suspect of this vaccine now and afraid to get the booster. The neuropathy continues to get worse with burning, overactive nerve sensations that shoot thru my foot, hot and cold sensations, numbness etc. My PCP agrees there is a possibility this was caused by the vaccine.

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@twobrooklyn

Don’t forget your vitamins, especially vitamin B complex!

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Hi - my head swirls at all the information sometimes! B Complex works for you? I have not tried yet, want to be careful. What symptoms does it help for you? My docs have zero idea what has caused my neuropathy, but 5 years ago they said “MAYBE” a vitamin deficiency or “MAYBE” too much B6 (kinda like the medicine warnings “may cause diarrhea OR constipation, May cause drowsiness OR sleeplessness….). Anyway, back then I didn’t take B6 or any other vitamin supplements, so they have succeeded in making me nervous about taking anything without narrowing down more specifically the MAYBE vitamins with more affirmative tests. But I have heard folks talk B Complex and would like to hear your thoughts. Thanks!

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