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COVID vaccines and neuropathy
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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Hello @jay4422000 and welcome to Mayo Clinic Connect. I am wondering if you reported your experience to VAERS?
How long ago did you have your second shot?
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1 ReactionHello @kzee64, Welcome to Connect. I'm sorry to hear that you had such a bad reaction from your first Moderna vaccine but it is really good news that you are back to your normal with you 2015 diagnosis of small fiber neuropathy and autonomic dysfunction. It's also good to hear after reporting the symptoms from the first shot that the doctor called you back and you reported your symptoms to VAERS.
Now that you have made a decision to stay with family after your second Moderna shot, can you let us know if you have the same or similar symptoms after you receive the second shot?
I did report it, my second shot was end of April symptoms started within a week
Hello @johnbishop, I will post again as soon as I'm recovered from my second dose which I'm getting tomorrow. I'm feeling very nervous tonight, but trying to keep a positive outlook. Thank you for your comments.
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3 ReactionsPlease keep us posted and thank you for sharing. You are in my prayers.
@bustrbrwn22, Thank you for your comment and prayers.
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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1 ReactionHello @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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2 ReactionsHi. 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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1 Reaction@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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