COVID vaccines and neuropathy

After reading many comments on this message board for a few weeks as a guest. I finally decided to join and share my experience. I got my first (and only) Pfizer shot in early April. Five days later my feet started to burn and the bottom of my toes tingle. As the days went by the burning spread up to my ankles and then my lower legs. Around the same time I began to experience a tight sensation around my calves, like wearing tight socks but..I'm not wearing socks. As the days/weeks went by more stuff happened. Burning in my lower arms, inflammation in my knees, stiffness and inflammation in my fingers, along with throbbing pain in the pads of my fingertips and one evening a vein in my finger swelled, throbbed and my finger turned red and blue. The swelling in that finger has not completely gone away after a month. For a few weeks I had a severe sensitivity in my skin all over my body. My clothes hurt, Drying myself with a towel hurt. Even the palms of my hands hurt. Thankfully that one issue seems to have subsided but pretty much everything else is still happening 4 months later. I went to my primary doctor. He did blood tests which indicate high inflammation (never had this before the shot). He sent me to a rheumatologist. More tests. No specific auto immune disease is showing up as the cause. They both agreed my immune system had a hyper reaction to the vaccine and both of them advised me not to get the second shot. I was give a Medrol pack which did absolutely nothing. Now I'm on an anti-inflammatory/immuno-suppressant Dmard sulfasalazine which I've been taking for almost three months but no improvement yet. It can take time to work if it's going to help at all. I'm on an anti-inflammatory diet, I'm taking fish oil, vitamins, and using magnesium lotion on my legs but nothing seems to help. I'd like to see a neurologist next and/or a vascular doctor to look at my fingers. I'm hoping over time this will subside but it's pretty discouraging to still feel awful 4 months later. In addition- my 31 year old perfectly healthy daughter got 1 shot of Pfizer and has been dealing with severe tachycardia for months. It has settled down for her somewhat in the last month or so but is not gone. No history of heart issues prior. We both reported our reactions to VAERS but they have not contacted either one of us or our physicians to the best of my knowledge. I am not anti-vax. I do not like only being 1/2 vaccinated. It's not enough. I would love to be fully vaccinated. But this vaccine has wrecked havoc on my health with no end in sight yet. And reading comments all over the internet like getting Covid is worse than any side effects of the vaccine is sadly no comfort to folks like me who have been suffering for months with debilitating side effects from the vaccine that have not subsided.

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@mcd2021 I am sorry to hear all you and your daughter have endured post covid vaccine. Unfortunately in order to receive the vaccine one gives consent knowing the vaccines are experimental. They were approved as a health emergency. Not enough time has been allowed for anyone to learn of the long term effects. Perhaps more studies are being conducted for the covid mRNA vaccines because the vaccines use a different methodology than all previous vaccines for the other illnesses. Vaccines with mRNA have not been used on humans until now. I hope your doctors will be able to find help for relieving your symptoms soon. We all have to decide what is best. I too believe in vaccinations but at the same time I am cautious regarding what goes into my body. I don’t want additional possible health issues down the road especially when the symptoms are new to the doctors. When I am convinced it is safe for me I will get vaccinated. As they say if the shoe fits, wear it. I am waiting to learn as more data becomes available. So far I have not been given good reasons when the long term effects are not known. Mind you, as of today, according to the John Hopkins University website for covid infections and mortality, here in the United States the death rate is 1.68% of all covid infections. Meaning out of one hundred people who contract covid infection 2 will die and 98 will survive.

Seems we have a choice to make according to our personal exposure risk. Do we risk the possible side effects of the covid infections or get the vaccination to risk possible side effects? It may be best to avoid covid infection all together if possible i.e. according to one’s own exposure risk. While the covid vaccines have shown to reduce the number of hospitalizations and deaths they do not prevent hospitalizations and deaths amongst the vaccinated individuals as per the CDC website. Unfortunately, as another Mayo member pointed out, no vaccine is 100% effective. I wish you well in finding answers to help you soon. Hang in there!

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"here in the United States the death rate is 1.68% of all covid infections. Meaning out of one hundred people who contract covid infection 2 will die and 98 will survive."

That's not correct. Confirmed cases are not total infections. The initial JAMA report pegged mortality at 5 per thousand, severity at 5 per 100. 8 out 10 are subclinical. That's probably about right. The insidiousness of covid is how infectious it is, not how lethal it is.

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Hi @sdf2000 thanks for pointing out your information. I am using the data John Hopkins University is presenting on their website. It shows the total number of deaths to the total number of covid infections in the United States since the first reported covid infection. I understand and was not looking for the insidiousness. That would differ depending on the variant.

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Hello @mcd2021, Welcome to Connect. I'm really sorry to hear that both you and your daughter had such severe reactions and side effects from the Pfizer shot. I saw in the VAERS - FAQs that there is a mention that healthcare providers are required to report Multisystem Inflammatory Syndrome which sounds similar to what you are having. I'm not sure how hard that is to diagnose but it you might want to run it by your doctor. Here's is more information that may be helpful.

VAERS - FAQs: https://vaers.hhs.gov/faq.html

Even though the link below is in reference to children it also can occur in adults -
"This new and serious syndrome, called multisystem inflammatory syndrome in adults (MIS-A), occurs in adults who were previously infected with the COVID-19 virus and many didn't even know it. MIS-A seems to occur weeks after COVID-19 infection, though some people have a current infection." -- Multisystem inflammatory syndrome in children (MIS-C) and COVID-19: https://www.mayoclinic.org/diseases-conditions/mis-c-in-kids-covid-19/symptoms-causes/syc-20502550

Have you thought about getting a copy or your report to the VAERS database? (one of the FAQs tells you how to obtain a copy)

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Hi. Based in Europe. We are several having had exact same issues. One of us had a light Covid in October. Her Covid was less bad than her P shot. She has been 4 weeks in hospital after 2nd shot of P. Unfortunately, it s like a lottery...

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@mcd2021 I am sorry to hear all you and your daughter have endured post covid vaccine. Unfortunately in order to receive the vaccine one gives consent knowing the vaccines are experimental. They were approved as a health emergency. Not enough time has been allowed for anyone to learn of the long term effects. Perhaps more studies are being conducted for the covid mRNA vaccines because the vaccines use a different methodology than all previous vaccines for the other illnesses. Vaccines with mRNA have not been used on humans until now. I hope your doctors will be able to find help for relieving your symptoms soon. We all have to decide what is best. I too believe in vaccinations but at the same time I am cautious regarding what goes into my body. I don’t want additional possible health issues down the road especially when the symptoms are new to the doctors. When I am convinced it is safe for me I will get vaccinated. As they say if the shoe fits, wear it. I am waiting to learn as more data becomes available. So far I have not been given good reasons when the long term effects are not known. Mind you, as of today, according to the John Hopkins University website for covid infections and mortality, here in the United States the death rate is 1.68% of all covid infections. Meaning out of one hundred people who contract covid infection 2 will die and 98 will survive.

Seems we have a choice to make according to our personal exposure risk. Do we risk the possible side effects of the covid infections or get the vaccination to risk possible side effects? It may be best to avoid covid infection all together if possible i.e. according to one’s own exposure risk. While the covid vaccines have shown to reduce the number of hospitalizations and deaths they do not prevent hospitalizations and deaths amongst the vaccinated individuals as per the CDC website. Unfortunately, as another Mayo member pointed out, no vaccine is 100% effective. I wish you well in finding answers to help you soon. Hang in there!

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@mcd2021 hello and I’m so very sorry you’re going through this. Your symptoms sound so much like mine. I started the very first day after my first Pfizer shot with very slight weakness of my right leg, then later intense burning/tingling in both feet and hands and at times farther up my legs and had random intense stinging sensations just about anywhere in my body at times. My predominant problems now, 8 months later, are still burning/stinging in my feet, weak feeling and twitching in right leg. I do not actual have loss of strength or function in my leg, which is the only thing day to day that is somewhat reassuring. But is that next? I too have only received somewhat vague diagnoses from my doctors. They are baffled and grasping a bit. Have had every test except LP and I kind of wish I had done that too. No medication has really had any effect on my symptoms. They do dissipate when I sleep which is a huge blessing. I hope you’ll get in to see a neurologist soon. That’s who you really need. I hope that this syndrome we’re going through is soon going to be recognized as such so that we might at least get some answers if no relief. The mental damage has been worse than the physical. I am a different person than I was 8 months ago, sadly not for the better. Here’s the kicker - on the advice of all my docs I did get the 2nd shot. My symptoms didn’t get worse. But now apparently we’re looking at waning immunity and boosters. It’s hard to be optimistic at times but I pray we will all start to see improvement!

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The John Hopkins data was using confirmed cases, not total infections. Total infections are always going to be unknown.

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Hi John, my sincere thanks for sharing that info. The link states that multisystem inflammatory syndrome affects children and adults who were previously infected with Covid. Thankfully I have not so I don't think that's what is going on. My symptoms also do not match which I was glad to see. I was recently told that the vaccine likely pushed me into an autoimmune overload which is not to say I have an autoimmune disease but rather there is now excess inflammation in my body and my immune system is unable to regulate due to the overload. As a result I am experiencing peripheral neuropathy and RA-like symptoms in my knees and hands. I am hoping that over time the medication I am taking, along with supplements and an anti-inflammatory diet will help. Many thanks again for your thoughtful reply.

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