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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@athenalee

Interesting. My neuropathy symptoms have increased as well over the past week and a half since I got my first dose. I figured it was just the continuing onslaught of Tacrolimus. I wish us both a positive non-symptomatic response to the second shot!

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@athenalee I wonder how many that have noted increased neuropathy symptoms after COVID vaccine live in areas of the country that have been experiencing freezing, freezing weather. Does your neuropathy get worse when its cold?

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@athenalee

Interesting. My neuropathy symptoms have increased as well over the past week and a half since I got my first dose. I figured it was just the continuing onslaught of Tacrolimus. I wish us both a positive non-symptomatic response to the second shot!

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Hello @athenalee and others in this discussion group.

Last year, Sept. 2020, I had Shingles. I was in a great deal of pain for several weeks. By the end of the month, I didn't need to use any more Gabapentin for the pain and felt back to normal. After my first COVID vaccination (Pfizer) in January of this year, I had a slight return of the Shingles-like pain and it was in the same area where my Shingles had been the year before.

I contacted my neurologist and she said that it could be that the Shingles virus (which remains in your body) might have been activated by the COVID vaccine. She said that while this neuropathy pain was not mentioned as a specific side effect of the COVID vaccine the hospital has had other patients reporting these same types of symptoms.

After my second COVID vaccination, I had some similar discomfort but it didn't last very long and I feel back to normal again. I feel that the discomfort was worth the protection I hope to have as a result of the vaccine.

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@hopeful33250

Hello @athenalee and others in this discussion group.

Last year, Sept. 2020, I had Shingles. I was in a great deal of pain for several weeks. By the end of the month, I didn't need to use any more Gabapentin for the pain and felt back to normal. After my first COVID vaccination (Pfizer) in January of this year, I had a slight return of the Shingles-like pain and it was in the same area where my Shingles had been the year before.

I contacted my neurologist and she said that it could be that the Shingles virus (which remains in your body) might have been activated by the COVID vaccine. She said that while this neuropathy pain was not mentioned as a specific side effect of the COVID vaccine the hospital has had other patients reporting these same types of symptoms.

After my second COVID vaccination, I had some similar discomfort but it didn't last very long and I feel back to normal again. I feel that the discomfort was worth the protection I hope to have as a result of the vaccine.

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Hi Teresa @hopeful33250 thank you for sharing your post. Glad to hear your exacerbated symptoms were temporary. We don’t have full knowledge yet about the virus or the medications to tell how much protection we really get and for how long. In fact, wearing protective equipment is still required after receiving the second dose. I would consider the risks of contracting the virus first before determining what to do. Thanks again for your helpful information. Wish you well.Toni

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@steeldove

@athenalee I wonder how many that have noted increased neuropathy symptoms after COVID vaccine live in areas of the country that have been experiencing freezing, freezing weather. Does your neuropathy get worse when its cold?

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Certainly a possible supposition. Though I’m here in Vermont, where we haven’t seen above freezing in quite a while. But I’ll let you know when we thaw out in a few months!

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@hopeful33250

Hello @athenalee and others in this discussion group.

Last year, Sept. 2020, I had Shingles. I was in a great deal of pain for several weeks. By the end of the month, I didn't need to use any more Gabapentin for the pain and felt back to normal. After my first COVID vaccination (Pfizer) in January of this year, I had a slight return of the Shingles-like pain and it was in the same area where my Shingles had been the year before.

I contacted my neurologist and she said that it could be that the Shingles virus (which remains in your body) might have been activated by the COVID vaccine. She said that while this neuropathy pain was not mentioned as a specific side effect of the COVID vaccine the hospital has had other patients reporting these same types of symptoms.

After my second COVID vaccination, I had some similar discomfort but it didn't last very long and I feel back to normal again. I feel that the discomfort was worth the protection I hope to have as a result of the vaccine.

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Thank you for sharing. I’m glad that you’re symptoms returned to normal. I got my vaccine through Lahey where I got my transplant. So, I’m going to contact my nurse to see if others have reported worsening neuropathy symptoms after the vaccine. It is certainly uncertain territory as more of us with illnesses receive the Covid vaccine.

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@hopeful33250

Hello @athenalee and others in this discussion group.

Last year, Sept. 2020, I had Shingles. I was in a great deal of pain for several weeks. By the end of the month, I didn't need to use any more Gabapentin for the pain and felt back to normal. After my first COVID vaccination (Pfizer) in January of this year, I had a slight return of the Shingles-like pain and it was in the same area where my Shingles had been the year before.

I contacted my neurologist and she said that it could be that the Shingles virus (which remains in your body) might have been activated by the COVID vaccine. She said that while this neuropathy pain was not mentioned as a specific side effect of the COVID vaccine the hospital has had other patients reporting these same types of symptoms.

After my second COVID vaccination, I had some similar discomfort but it didn't last very long and I feel back to normal again. I feel that the discomfort was worth the protection I hope to have as a result of the vaccine.

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I had shingles about 10 years ago
….a severe case. I felt rotten after my 1st CoVid vaccine. Getting the 2nd tomorrow..Moderna. I will let you all know my experience. I also have mild asthma and of course, the 5 yr. stable end stage cirrhosis.

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This is a pattern that needs to be reported.. Has anyone's gotten worse after the vaccine then gotten better again?

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@joeyd5641

This is a pattern that needs to be reported.. Has anyone's gotten worse after the vaccine then gotten better again?

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Any effects which are not considered normal vaccine effects or were not provided to you by the provider giving the vaccine MUST BE REPORTED TO THE PROVIDER WHO GAVE IT TO YOU FOR LOGGING INTO THE VAERS.

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@joeyd5641

This is a pattern that needs to be reported.. Has anyone's gotten worse after the vaccine then gotten better again?

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Hi Joey, my symptoms worsened after my first shot along with a sore arm; it lasted for a week then back to normal. My second shot no sore arm but some new symptoms appeared, nothing drastic but I think (hope) are fading. I think anything that impacts our immune system is usually going to have some minor effect; it could even be for the better! 😊 Helen

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I am not sure of the type of neuropathy I have. It is in my feet and now moving to my hands. I received both shots (Moderna) and I felt a little sore and very fatigued for 2 days after the first shot, and had a low-grade fever, chills, and fatigue for three days after the 2nd shot. I did notice that after the second shot my sugars ran high for about 12 days. So far, so good. On a side note, I am getting a spinal stimulator put in my back on Monday to help with the foot neuropathy. Hopefully, it helps!

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@fortinclan

I am not sure of the type of neuropathy I have. It is in my feet and now moving to my hands. I received both shots (Moderna) and I felt a little sore and very fatigued for 2 days after the first shot, and had a low-grade fever, chills, and fatigue for three days after the 2nd shot. I did notice that after the second shot my sugars ran high for about 12 days. So far, so good. On a side note, I am getting a spinal stimulator put in my back on Monday to help with the foot neuropathy. Hopefully, it helps!

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Hello @fortinclan, Welcome to Connect. It sounds like the side effects you had from the Moderna vaccine shots were not too extreme which I think is good news. I've only had my first Pfizer vaccine but am due to get my second one this Friday. My only side effect was a sore arm where I got the shot the first evening then things got better. Since you mentioned you have neuropathy but are not sure of the specific cause – idiopathic link mine – small fiber peripheral neuropathy, you may be interested in learning what other members with neuropathy have shared in a few other discussions on neuropathy and spinal cord stimulators:

– Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
– Living with Neuropathy – Welcome to the group: https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/
– Supplement recommendations: What can help neuropathy?: https://connect.mayoclinic.org/discussion/supplement-recommendations-can-help/
– Spinal Cord Stimulation: https://connect.mayoclinic.org/discussion/spinal-cord-stimulation-2/
– Comparison of Spinal Cord Stimulators from Boston Sci., Nevro: https://connect.mayoclinic.org/discussion/comparison-of-spinal-cord-stimulators-from-boston-sci-nevro/

Hoping for success on getting your spinal cord stimulator implanted and providing some relief for you on Monday. Can you provide an update and share your experience after your appointment Monday?

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@kathleen123

By exacerbate I mean I had very little neuropathic problems in my arms until after the 1st shot when I developed burning, pins and needles, coldness and weakness in my arms. On a scale of 1-10 I’d say it went from a 1 or 2 to about a 5 or 6. It’s been 3 weeks and it hasn’t gone away. I’m going to go ahead and get the second shot on Tuesday.

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Had my 2nd Pfizer shot yesterday. My arm neuropathy had died back to maybe a 4 before but it’s now a 6 or 7. Hopefully it will dial back again. Last night both my husband and I soreness in our shoulder blades and between them. No other side effects except pain in and near the injection site.

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