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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@jonathanc

Because my immune system response to pfizer has reactivated by PN and led to further nerve damage in my feet and legs which has still not stabilized 5 weeks later I am certainly hesitant about a second shot and wondering whether it might be better to try and get the one shot adenovirus j and j vaccine for the second shot. Any advice welcome.

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That would be a question best addressed to an epidemiologist or infectious disease doc. Perhaps your primary doc or rheumatologist can reach out to someone and get that answer for you.
Sue

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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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@lia I also have new onset neuropathy since the vaccine. I am 5 months in and my symptoms seem a bit milder. I too worried about things becoming worse and perhaps eventually very debilitating but thankfully this has not been the case. I am hopeful you will eventually see your symptoms ease as well. Have you been to a neurologist?

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@lk61

@lia I also have new onset neuropathy since the vaccine. I am 5 months in and my symptoms seem a bit milder. I too worried about things becoming worse and perhaps eventually very debilitating but thankfully this has not been the case. I am hopeful you will eventually see your symptoms ease as well. Have you been to a neurologist?

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Which vaccine did you get? Did you get second dose (if so did it make things worse)? Glad to hear your symptoms are getting better slowly. I also had new onset neuropathy after my first dose.

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@lk61

@lia I also have new onset neuropathy since the vaccine. I am 5 months in and my symptoms seem a bit milder. I too worried about things becoming worse and perhaps eventually very debilitating but thankfully this has not been the case. I am hopeful you will eventually see your symptoms ease as well. Have you been to a neurologist?

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Thanks for that. I am awaiting my scheduled appointment. When you say a bit milder, are you seeing progressive improvement?

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@lia

Thanks for that. I am awaiting my scheduled appointment. When you say a bit milder, are you seeing progressive improvement?

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@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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@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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Have you found anything to be helpful? Also, at this point, I can not imagine taking the second dose. May I ask if you had your injury following the first or second dose, and which vaccine you received? Thank you so much for talking with me about this. I must admit to being quite frightened.

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@lk61

@lia I also have new onset neuropathy since the vaccine. I am 5 months in and my symptoms seem a bit milder. I too worried about things becoming worse and perhaps eventually very debilitating but thankfully this has not been the case. I am hopeful you will eventually see your symptoms ease as well. Have you been to a neurologist?

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I am so sorry that you were also injured in this way, and have now lived with it for nearly half a year.

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@kathleen123

I have (small fiber) non-length dependent neuropathy. I had my first Pfizer Covid-19 vaccination 2 1/2 weeks ago. It exacerbated my neuropathy symptoms. I’m scheduled for my 2nd shot on Wednesday but I don’t know whether to get it since the 2nd shot is much more likely than the first to have significant adverse effects. I called Pfizer and they claim that Covid-19 vaccination is not related to any neurological side effects although I have read elsewhere it can exacerbate PN. My internist says there is just no data to know whether the 2nd shot is likely to make my symptoms worse.

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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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@lia

Have you found anything to be helpful? Also, at this point, I can not imagine taking the second dose. May I ask if you had your injury following the first or second dose, and which vaccine you received? Thank you so much for talking with me about this. I must admit to being quite frightened.

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@lia I think the only thing I can say that is helpful is staying as rested and anxiety free as possible. I use over the counter anti inflammatories such as aleve or ibuprofen from time to time and although they may provide a bit of relief it’s not significant or consistent. Staying stress free is difficult since the condition itself has caused a huge amount of anxiety. I had a few bad months where I was convinced that I was in the first stages of either MS or ALS or Parkinson’s. Fortunately the tests and neuro visits have ruled all of that out and at this point the only logical conclusion is that my symptoms are vaccine related. I got the Pfizer vaccine and my symptoms started the next day. On the advice of 2 docs, I did go ahead with the 2nd dose 3 weeks later. Looking back I few like it’s pretty surprising they advised me to go ahead with the 2nd dose. Fortunately things did not get worse after 2nd dose.

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