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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@kle

Thank you for sharing your experience ralphysmom, It is a terrible disease and I hope it gets better and better for us each day. When the symptom first started, I voiced my opinion to several doctors that this was likely due to Covid vaccine, but since it's earlier in the pandemic, they didn't think it was related. Some even encouraged me to get a booster. Now it appeared that there are more and more reports of covid vaccine associated SFN, although there is no real study to establish cause and effect yet. I hope someone will study and shed more light on this soon. I got sick several times during winter of 2019 with cold and gastrointestinal symptom (vomiting and diarrhea) but then there were no diagnostic test for covid, so I' was not sure if I had covid. I had several tests for covid antibody in late 2021 but there were all negative until mid 2022 when I tested covid positive by PCR but I had no symptom and antibody test about three weeks after were negative, so I was not sure if the PCR test was real.

Regarding your skin biopsy finding, I wonder if additional biopsy in other areas of your body would turn up positive. It also could be that you are healing well now so the skin biopsy test is all negative.... Do you have symptoms as well in the upper body areas? Are doctors still helping you manage the pain or do you find lidocaine is sufficient to control pain in general? What else could be done now to reach a final diagnosis of your condition? Lidocaine cream does help me but the effect is not long. Right now, whatever I eat causes stomach gas and bloating so I avoid medication and supplement for now. I'm working with a nutritionist to try to fix this issue too. I hope this gets better too. Thanks again for sharing your experience.

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Hi @kle, for whatever reason they only do that area, foot/ankle. The skin test was done when it was acute. I had burning paresthesias to both my arms without temp sensation changes like in lower body. Similar but not exactly the same. My fushion surgery seems to have helped the arms. I dont require medication for the lower but I did when it was acute. I had Lidocaine patches put on lower body areas and it was enough maybe to distract my mind off the pain but wasnt too helpful. I have a different neurologist who has a high interest in MS. He is doing MRI imaging and serum lab tests. Not done yet but soon. I think the lower sx's could stem from my neck b/c I have been having more burning at the cervical surgery site lately and it is "waking up" some of these other upper and lower area but still not as bad as last year. I dont know if Covid was an initiator or an agitator of these lower symptoms but nervous system can be reactive and activate other areas. I dont know if Ill ever know. I try to eat well, whole foods and more vegetables and less meat. No processed food and I like to exercise. Best wishes to you and can keep the line of communication open as needed. Take Care

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My neurologist didn't request a skin biopsy. My SFN is caused by antibodies and was diagnosed through extensive blood tests at UCLA. IVIG treatments would probably help me but I'm unable to tolerate them. Although I am better than when I first had neuropathy symptoms so maybe the few doses I had helped.
My SFN is not from the vaccines it is pre-covid. I never had the mRNA vaccines. I had the other vaccines.
I'm the person who started this discussion a few years ago and I hope everyone who has shared their experiences is doing better now.
Take care. Joy

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@ralphysmom

Hi @kle, for whatever reason they only do that area, foot/ankle. The skin test was done when it was acute. I had burning paresthesias to both my arms without temp sensation changes like in lower body. Similar but not exactly the same. My fushion surgery seems to have helped the arms. I dont require medication for the lower but I did when it was acute. I had Lidocaine patches put on lower body areas and it was enough maybe to distract my mind off the pain but wasnt too helpful. I have a different neurologist who has a high interest in MS. He is doing MRI imaging and serum lab tests. Not done yet but soon. I think the lower sx's could stem from my neck b/c I have been having more burning at the cervical surgery site lately and it is "waking up" some of these other upper and lower area but still not as bad as last year. I dont know if Covid was an initiator or an agitator of these lower symptoms but nervous system can be reactive and activate other areas. I dont know if Ill ever know. I try to eat well, whole foods and more vegetables and less meat. No processed food and I like to exercise. Best wishes to you and can keep the line of communication open as needed. Take Care

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Thank you very much @ralphysmom. I hope you feel better each day. You seem to be doing all the right things including good nutrition. I will try to do the same.

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Three years ago I developed chemo induced neuropathy in my hands and feet. In 2021 I participated in a clinical trial which confirmed my diagnosis through a skin biopsy, skin ultrasound and other sensory tests performed by a neurologist. I don't think the trial is completed so I can't give any results. I can say that I've had four Pfizer vaccine shots and noticed no worsening of symptoms. However, last week I tested positive for covid (mild symptoms and I took Paxlovid), and the neuropathy worsened in my hands and feet. So for me, I will continue to get the shots. As to nutrition, etc., I've got nothing. The trial wax testing a supplement containing some form of nicotinamide.

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..not perhaps correct place for this but I know i got P.N. after Norflox, a Quinoline drug, 2016 but years ago I did not keep track of illnesses and medications... now am wondering about retina problems and laser surgery/floaters and the whole shebang.... too late to go back in time for many health issues treated by antibiotics but resulting side effects.... recently had Trimethoprime and my floaters are worse and also seeing thousands tiny moving dots - Optometrist thinks stress but I think the meds.. how do I prove and is it treatable.. I doubt it. Just reading about Cipro and eye issues, why are they allowed to still treat us with such bad side effects when another drug woul be less life-changing... I dont get it. Even pharmacist says; you aren't allergic to it, its a side effect! Is it worth swapping one illness for such bad side effects? J

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@cue

My neurologist didn't request a skin biopsy. My SFN is caused by antibodies and was diagnosed through extensive blood tests at UCLA. IVIG treatments would probably help me but I'm unable to tolerate them. Although I am better than when I first had neuropathy symptoms so maybe the few doses I had helped.
My SFN is not from the vaccines it is pre-covid. I never had the mRNA vaccines. I had the other vaccines.
I'm the person who started this discussion a few years ago and I hope everyone who has shared their experiences is doing better now.
Take care. Joy

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Oh, the previous vaccines we've had many years ago, can cause neuropathy years later. Such as hepatitis vaccines , and flu vaccines I unfortunately had on my doctor recommendation when travelling.
Even flu vaccines some years before covid were mRNA already .

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...never thought to check but when I came to Canada had to have smallpox vaccination?? long time ago. but every time I went back to uk to see parents had to have the vaccinatin to get back into /Canada as did my two children one of whom was only 5 months old one time; and I often wonder if some of our later adult illnesses could have been cause by so many... I cannot recall exact details though and in those days no computers! And how many other "vaccines" have we had over the years....

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@lacy2

...never thought to check but when I came to Canada had to have smallpox vaccination?? long time ago. but every time I went back to uk to see parents had to have the vaccinatin to get back into /Canada as did my two children one of whom was only 5 months old one time; and I often wonder if some of our later adult illnesses could have been cause by so many... I cannot recall exact details though and in those days no computers! And how many other "vaccines" have we had over the years....

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Way too many
My foot neuropathy started within a month of the shingles vaccine
Second Pfizer worsened it terribly. Stopped there and would never have another one

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Anyone diagnosed with multi neuropathy associated with POEMS?

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@shona

Way too many
My foot neuropathy started within a month of the shingles vaccine
Second Pfizer worsened it terribly. Stopped there and would never have another one

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Same thing happened to me. Developed neuropathy 24hrs after I got Shingrex. But it only lasted 2days. I got the second shot and it came back again but cleared after a month. My neurologist said it was just inflammation from the vaccine and it shouldn’t be permanent. Then had my first Pfizer vaccine and it caused so much neuropathy pain and this time it didn’t go away. My neurologist urged me to get my second covid shot but knowing what the 1st one did to me I never got another one. Scared to even get the flu vaccine at this point. Wish I had never gotten Shingrex! If I hadn’t maybe the covid vaccine wouldn’t have caused this on going neuropathy and I’d be living a normal life in more ways than one. But I’ll never know. Wish you well.

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