1. < Neuropathy

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?

Interested in more discussions like this? Go to the Neuropathy Support Group.

Moderator
Amanda Roe | @amandajro | May 17, 2021
In reply to @lia "This thread has helped me and I thank you all for that. Before the COVID vaccine..." + (show)
@lia

This thread has helped me and I thank you all for that. Before the COVID vaccine I had no signs of neuropathy. I had my first dose of the Pfizer vaccine on April 30th. Within 5 minutes my injection arm felt very heavy with extreme tingling. 10 minutes later, my lips, tongue, and hands and feet followed suit. I was transferred from the vaccination site to the ER and by the time I was wheeled in, I was trembling rather violently as if all of the muscles in my body were have rapidly moving spasms. The trembling subsided after about an hour and after 2 more hours of observation, I left there with the left side of my face feeling as if I'd rubbed icy hot cream all over it. I remained in this condition with half of my face tingling until day 5, when my feet and hands joined in again. The paresthesia has been consistent since then. On day 5, my muscles and joints ached terribly and I had a headache. On day 7 the joint pain largely subsided, but I have been weak and wobbly, and prone to losing my balance ever since. I have consistent pins and needles in my limbs and face, and a constant low grade headache. As of 2 days ago, I have burning pain on one arm upon light touch. My symptoms appear to be progressing. I'm very concerned that this might be my new normal. I have worked in the woods with small children for over 20 years, where I walk all day, climb trees, climb boulders, and play physically. These changes brand new to me and debilitating. I reported to VAERS and V-Safe. I have Hashimoto's.

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Hello @lia and welcome to Mayo Clinic Connect. I am sorry to hear of your symptoms. You said that you were transported to the ED following your vaccine and emerging symptoms. Can you share more about what they did for you at the ED and what you were told upon discharge in terms of what to expect and what type of follow up you would need?

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Moderator
Amanda Roe | @amandajro | May 17, 2021
In reply to @bcsurvivor2 "I didn’t have neuropathy before the shot and after second shot day three neuropathy in my..." + (show)
@bcsurvivor2

I didn’t have neuropathy before the shot and after second shot day three neuropathy in my right leg, foot and hand. I knew I shouldn’t have gotten this stupid shot. I have enough health issues and now this.

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Hello @bcsurvivor2 and welcome to Mayo Clinic Connect. I can understand your frustration and empathize with you.

Can you share how long it has been since your second vaccine?

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nance78 | @nance78 | May 17, 2021

Hi everyone.
I got Moderna 1st shot on 27th of May. Experienced tingling in fingerscand face on same day than tingling in feet, legs and torso the following days. I got a rash on day 8, on the vaccinated arm.. then swollen lymphs nodes. I had 2 days without any tingling this w-e but tingling came back in the face today. I worry about taking 2nd dose. Very scary side effects and annoying no one is listing them

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tracyt | @tracyt | May 17, 2021
In reply to @lk61 "@lia I never have times when I’m completely symptom free, but I do have episodes of..." + (show)
@lk61

@lia I never have times when I’m completely symptom free, but I do have episodes of worse intensity. Overall I feel these episodes are getting slightly less frequent and intense. It’s been quite a strange journey.

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I feel like this is exactly like my symptoms! I’m 5 months out. That’s interesting it didn’t worsen with the second dose, that’s primarily why I was nervous to get the second

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dhamil | @dhamil | May 17, 2021
In reply to @suzanne2 "I also got the 1st vaccine and had the side effects w/neuropathy. I was afraid but..." + (show)
@suzanne2

I also got the 1st vaccine and had the side effects w/neuropathy. I was afraid but did go ahead with the second and the side effects for that were milder than the 1st. Still had some issues but not to the degree I had with the 1st vaccine. I am glad it is over and done with!

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You said you had less side effects from the second dose. Does that mean all your side effects resolved from the first dose before getting the 2nd? I am still in a lot of pain. My Neurologist says I still should get the booster. He says I’m only 50% protected. But I’m afraid it will cause me even more pain. And they don’t know how long the vaccine even lasts yet.

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2 replies
lia | @lia | May 17, 2021
In reply to @amandajro "Hello @lia and welcome to Mayo Clinic Connect. I am sorry to hear of your symptoms...." + (show)
@amandajro

Hello @lia and welcome to Mayo Clinic Connect. I am sorry to hear of your symptoms. You said that you were transported to the ED following your vaccine and emerging symptoms. Can you share more about what they did for you at the ED and what you were told upon discharge in terms of what to expect and what type of follow up you would need?

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Hi Amanda, the ED simply kept me under observation for 3 hours. They had nothing to offer other than acknowledging that this was either a vaccine reaction or hyperventilation (the latter, is clearly not the case). They kept me under observation for 3 hours and released me wtihout any info on discharge other than to contact my PCP if the symptoms persisted and to take some Tylenol. They did not run any tests, other than heart and bp monitoring.

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1 reply
Moderator
Amanda Roe | @amandajro | May 17, 2021
In reply to @lia "Hi Amanda, the ED simply kept me under observation for 3 hours. They had nothing to..." + (show)
@lia

Hi Amanda, the ED simply kept me under observation for 3 hours. They had nothing to offer other than acknowledging that this was either a vaccine reaction or hyperventilation (the latter, is clearly not the case). They kept me under observation for 3 hours and released me wtihout any info on discharge other than to contact my PCP if the symptoms persisted and to take some Tylenol. They did not run any tests, other than heart and bp monitoring.

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Have you requested a follow up with your PCP?

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liz6 | @liz6 | May 17, 2021

I got my Pfizer vaccine 5 weeks ago and 1 week after I started having burning and tingling/numbness in my feet. I have a neuropathy from chemotherapy but haven’t felt it for 3 years. I’m still having significant discomfort and it seems to be getting worse. I regret getting this vaccine now that this has happened because it makes walking and sleeping difficult

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2 replies
jasmi | @jasmi | May 17, 2021
In reply to @dhamil "You said you had less side effects from the second dose. Does that mean all your..." + (show)
@dhamil

You said you had less side effects from the second dose. Does that mean all your side effects resolved from the first dose before getting the 2nd? I am still in a lot of pain. My Neurologist says I still should get the booster. He says I’m only 50% protected. But I’m afraid it will cause me even more pain. And they don’t know how long the vaccine even lasts yet.

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Totally new to this but considering most of my doctors had to research CIDP ...I was apparently diagnosed five years ago and never notified. The diagnosis explains alot. I got my first shot of the pfizer vaccine and other than a sore arm and a mild headache i was fine. I have type one diabetes and depression and anxiety so I was supposed to get my second shot Sunday and decided that i would see my primary first. I don't know what else i can do. There doesn't seem to be any scientific research on CIDP and the vaccine

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1 reply
lia | @lia | May 17, 2021
In reply to @amandajro "Have you requested a follow up with your PCP?" + (show)
@amandajro

Have you requested a follow up with your PCP?

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Yes, thanks for asking Amanda. I followed up immediately and had to be quite persistent in getting him to take this seriously. I have an appointment for neurological testing at the end of the week.

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