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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@rudy1208

I'm was a healthy 61 yr. old male, with mild idiopathic neuropathy in both feet prior to receiving the Moderna vaccine in March. Within 48 hours I was in the emergency room with extreme paresthesia throughout my entire body. The following 2 weeks the partial paralysis subsided but the foot neuropathy has increased from a 2 to a 9 on a 10 scale. My neurologist said to keep taking gabapentin, which frankly is almost useless for pain in this case. I agree with you that it's probably our immune system's over response to the vaccine. And that no one wants to talk about that possibility or have any idea about how to treat it. It sounds like we both need very competent neurologist/immunologist's help, but we could spend years and a fortune tracking down and securing that help. My thought's are mainly surrounding the question of why the pain doesn't subside? What can we do to dampen that response our bodies had to the vaccine? I wish you luck with your podiatrist today, might be able to directly address your pain.

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I hope your PN subsides in time. I’ve had this condition since knee surgery a year ago. For natural ways to reduce the pain, check out an old paper titled Lark Lands. Also skim through discussions at Earth Clinic. Compression socks (15-20), foot elevation, and Penetrex Cream help me the most.

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@joslyn

I hope your PN subsides in time. I’ve had this condition since knee surgery a year ago. For natural ways to reduce the pain, check out an old paper titled Lark Lands. Also skim through discussions at Earth Clinic. Compression socks (15-20), foot elevation, and Penetrex Cream help me the most.

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Thank-you for your reply. This is my first time posting anywhere and
‘information that might help is greatly appreciated.

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@amyd67

I am a 53 yr old female, had covid back in December. I received the Moderna vaccine in March, second shot in April and immediately started symptoms of peripheral neuropathy. No other variables in my life or lifestyle, so I am sure it was the vaccine that caused this. Maybe because I already had the virus, my body produced too many antibodies and they started to attack my nerves? Started with numb toes, pain in ball of foot, now have burning and cold sensation, worse at night, and it radiates up my ankles. I went to my primary care doc, she prescribed steroids for a week. The symptoms were much better, but came back after discontinuing the meds. I have been trying to get into a neurologist since- and where I live, the resources are very limited. New patient waits are well into the winter. My doctor recommended seeing a podiatrist that deals with neuropathy. I have an appointment today. I do not think it matters which vaccine you receive. I too have been researching the correlation between the vaccine and new onset neuropathy, and you are right. More and more cases being reported. Back in Feb, there was only 27 cases reported to VAERS. I too believe that physicians do not want to link the vaccine to any side effects, and am sure there are more cases out there than are being reported. I will update my own case after I see the podiatrist today, and see what they say.

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I am a physician and now feel strongly that we are going to see this blow up. I have had a similar reaction to Pfizer. Huge workup, all neg. Very healthy prior. I've had it for 5 months now. Look up Senator Johnson's press release on YouTube about it. Thankfully I've been able to get into 2 different neurologists since in the medical profession here in Dallas and seeing one more next Tuesday at UT Southwestern. My few tips: heat and over exertion makes the following day worse. I have not discovered anything that helps but time, but many are starting to see some relief who had the vaccine back in Dec/Jan so hope is there!! I believe heavy prednisone dosing when symptoms first appear will help but will see what the research and experience shows over the next year. Keep calling for a cancellation. Maybe send cookies to the neurologist with a request to get the first cancellation opening?? Food goes a long way for staff..... Many of us have an internal trembling type sensation along with weakness, fatigue. My legs shake and give out at times though finally seems to not be getting worse. Are you having any of these symptoms? The hand movement is very bizarre and I think is going to be a signature side effect to this vaccine for some. The file size limit isn't letting me upload my videos of this.

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@amyd67

I am a 53 yr old female, had covid back in December. I received the Moderna vaccine in March, second shot in April and immediately started symptoms of peripheral neuropathy. No other variables in my life or lifestyle, so I am sure it was the vaccine that caused this. Maybe because I already had the virus, my body produced too many antibodies and they started to attack my nerves? Started with numb toes, pain in ball of foot, now have burning and cold sensation, worse at night, and it radiates up my ankles. I went to my primary care doc, she prescribed steroids for a week. The symptoms were much better, but came back after discontinuing the meds. I have been trying to get into a neurologist since- and where I live, the resources are very limited. New patient waits are well into the winter. My doctor recommended seeing a podiatrist that deals with neuropathy. I have an appointment today. I do not think it matters which vaccine you receive. I too have been researching the correlation between the vaccine and new onset neuropathy, and you are right. More and more cases being reported. Back in Feb, there was only 27 cases reported to VAERS. I too believe that physicians do not want to link the vaccine to any side effects, and am sure there are more cases out there than are being reported. I will update my own case after I see the podiatrist today, and see what they say.

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As a person who mounted a strong autoimmune response (whole body inflammatory reaction) after the vaccine, and as a Mentor for the Covid discussions on Mayo Connect, I follow all of the vaccine reaction reports closely.
You are correct that there are more people reporting neueropathy after the vaccine, but as of today, VAERS, with 413,000 events reported out of 333,000,000 injections given, reports 1147 instances of neuropathy (all types.) that is .34 for every 100,000 doses. While it is not a little thing if it is you suffering, it is still an extremely rare occurence.

Please also remember that there are many cases of post-Covid neuropathy, some occurring several months after the virus. So it is possible that cases which are being blamed on the vaccine could have happened because someone had the virus previously.

Finally, even if neuropathy and other vaccine effects are FAR underreported, they number and severity does not begin to compare to the number and severity of adverse reactions, including hospitalization, ICU and death, that come from the virus itself. Please read the analysis in this recent post: https://connect.mayoclinic.org/discussion/covid-19-vaccination/?pg=1#comment-615736

Sue

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@sueinmn

As a person who mounted a strong autoimmune response (whole body inflammatory reaction) after the vaccine, and as a Mentor for the Covid discussions on Mayo Connect, I follow all of the vaccine reaction reports closely.
You are correct that there are more people reporting neueropathy after the vaccine, but as of today, VAERS, with 413,000 events reported out of 333,000,000 injections given, reports 1147 instances of neuropathy (all types.) that is .34 for every 100,000 doses. While it is not a little thing if it is you suffering, it is still an extremely rare occurence.

Please also remember that there are many cases of post-Covid neuropathy, some occurring several months after the virus. So it is possible that cases which are being blamed on the vaccine could have happened because someone had the virus previously.

Finally, even if neuropathy and other vaccine effects are FAR underreported, they number and severity does not begin to compare to the number and severity of adverse reactions, including hospitalization, ICU and death, that come from the virus itself. Please read the analysis in this recent post: https://connect.mayoclinic.org/discussion/covid-19-vaccination/?pg=1#comment-615736

Sue

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Please do not misinterpret my post. I am very PRO vaccine and would never try and talk anyone out of getting it. I didn’t get terribly sick from Covid, but enough to know I don’t want it again. I just think physicians , and I am married to one, should be reporting the adverse effects to vaccine, that is how we stay educated and informed. I just want to be taken seriously. I joined this site so I could find others to relate to and get insight on how to deal with my own situation, not to badmouth the vaccine. I would do it again if needed.

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@amyd67

I am a 53 yr old female, had covid back in December. I received the Moderna vaccine in March, second shot in April and immediately started symptoms of peripheral neuropathy. No other variables in my life or lifestyle, so I am sure it was the vaccine that caused this. Maybe because I already had the virus, my body produced too many antibodies and they started to attack my nerves? Started with numb toes, pain in ball of foot, now have burning and cold sensation, worse at night, and it radiates up my ankles. I went to my primary care doc, she prescribed steroids for a week. The symptoms were much better, but came back after discontinuing the meds. I have been trying to get into a neurologist since- and where I live, the resources are very limited. New patient waits are well into the winter. My doctor recommended seeing a podiatrist that deals with neuropathy. I have an appointment today. I do not think it matters which vaccine you receive. I too have been researching the correlation between the vaccine and new onset neuropathy, and you are right. More and more cases being reported. Back in Feb, there was only 27 cases reported to VAERS. I too believe that physicians do not want to link the vaccine to any side effects, and am sure there are more cases out there than are being reported. I will update my own case after I see the podiatrist today, and see what they say.

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Here's the Fox News article. Go to Fox News site and July 11, video named, "Sen. Johnson demands answers on adverse reactions to covid vaccine". Doctor said everyone has to report their conditions to the CDC!

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@billd

Here's the Fox News article. Go to Fox News site and July 11, video named, "Sen. Johnson demands answers on adverse reactions to covid vaccine". Doctor said everyone has to report their conditions to the CDC!

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Thank you. The podiatrist didn’t even listen to the vaccine route I was telling him. Blamed on everything …. Back trauma (none), diabetes (no) deficiency in iron, B6, B12 (blood tests show normal levels of everything). Prescription for gabapentin and referral to a neurologist. So that’s 2 doctors who will not report my reaction.

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@bowerstx

I am a physician and now feel strongly that we are going to see this blow up. I have had a similar reaction to Pfizer. Huge workup, all neg. Very healthy prior. I've had it for 5 months now. Look up Senator Johnson's press release on YouTube about it. Thankfully I've been able to get into 2 different neurologists since in the medical profession here in Dallas and seeing one more next Tuesday at UT Southwestern. My few tips: heat and over exertion makes the following day worse. I have not discovered anything that helps but time, but many are starting to see some relief who had the vaccine back in Dec/Jan so hope is there!! I believe heavy prednisone dosing when symptoms first appear will help but will see what the research and experience shows over the next year. Keep calling for a cancellation. Maybe send cookies to the neurologist with a request to get the first cancellation opening?? Food goes a long way for staff..... Many of us have an internal trembling type sensation along with weakness, fatigue. My legs shake and give out at times though finally seems to not be getting worse. Are you having any of these symptoms? The hand movement is very bizarre and I think is going to be a signature side effect to this vaccine for some. The file size limit isn't letting me upload my videos of this.

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@bowerstx Our stories & symptoms sound remarkably similar. I also experience mild twitching in the arch of my right foot frequently, which is probably my most troubling symptom as it frequently makes me concerned about ALS (3 neuros have told me to stop worrying about ALS). I do know that twitching can be part of neuropathy though. What is the hand movement that you mentioned?

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@amyd67

Please do not misinterpret my post. I am very PRO vaccine and would never try and talk anyone out of getting it. I didn’t get terribly sick from Covid, but enough to know I don’t want it again. I just think physicians , and I am married to one, should be reporting the adverse effects to vaccine, that is how we stay educated and informed. I just want to be taken seriously. I joined this site so I could find others to relate to and get insight on how to deal with my own situation, not to badmouth the vaccine. I would do it again if needed.

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@amyd67 I feel that this one moderator responds the same way to everyone who posts about neuropathy directly related to the vaccine. While I do understand where she’s coming from, I feel it has somewhat of a preachy tone. More and more of these complaints seem to be coming to light and I don’t think it’s totally true to generalize that people are better off with side effects from the vaccine than getting Covid. These side effects have changed my life. Despite the fact that I am still a vaccine proponent, I don’t need that preached to me when I’m looking for help. People absolutely need to know what they might experience.

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@polywog

Hi. I am so very sorry to hear of your experience with the vaccine. I’ve decided not to get it. I’m pretty healthy and sure I can handle Covid. But, the reason I wanted to respond to you, is that you say you burn all over. I have idiopathic small fiber neuropathy from head to toe. For about 10 years. Because I can’t hardly stand anything touching my skin, and I can’t even stand air movement, I always wear plush fleece pajamas or lounge wear. I also had these thick plush fleece throw blankets lying around. Then one day a couple of months ago I thought, I want Some sheets and pillowcases made out of this. So I got a twin size blanket to go under me, and a twin size blanket to go over me, and a third twin size blanket and a friend of mine sewed pillowcases for me. It made such a difference in my comfort during the night. I’m just so happy about it I wanted to share it. I even have plush fleece washcloths! I seriously don’t like anything touching my skin.

This is my first comment on this site. So I’ll share just a couple quick things: I take gabapentin 600 mg 3X, Nucynta 50 mg 4x, and Nucynta ER 100 mg 2X. And if it gets really bad, I add a Benadryl. Surprising how well Benadryl helps me. I’ve been very stable for several years. I’ve never escalated with my medication and I feel well managed.

I also have the autonomic problems related to small fiber neuropathy. High heart rate, low blood pressure, thermal dysregulation etc. but I’m OK pretty much. There is a Small fiber neuropathy researcher at Harvard medical/Mass General named Anne Louise Oaklander And she has some Informative lectures on YouTube. FYI.

You take good care now. Godspeed.

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Did the gabapentin cause you to gain weight? I was prescribed some for my neuropathy systems after my Covid vaccine and goin through menopause it has been a struggle to keep weight off. I am afraid to take it.

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