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.

saski | @saski | Mar 10, 2022
In reply to @nance78 "Dear Sasha, I had neuropathies starting again after my first doese of Moderna. The symptoms were..." + (show)
@nance78

Dear Sasha,

I had neuropathies starting again after my first doese of Moderna. The symptoms were similar to my Guillain Barre Syndrome but much lighter ,I had 6 years ago. The symptoms looked more like SFN than GBS this time. The symptoms lasted about 10 weeks. I met with 3 neurologists, 1 immunologist and several doctors. All confirmed I SHOULD NOT receive the other vaccines. NHS ENgland took all these comments on board and issued me with an exemption.
I recently had Covid, Omicron. I had it very light but my neuropathy issues came back. Lighter than the vaccine, so far. I am still monitoring.
I hope my experience can help.
Kind regards,
Nancy

Jump to this post

hi Nancy,
Thank you for your reply and I'm sorry to hear about your experiences.
This is such a difficult and challenging situation to have to deal with. I hope everything has settled down to a manageable level, and that your covid has not caused any lingering harm.
It is all really quite alarming. But I'm glad to hear you had some sympathetic guidance. This is critical.
I really appreciate your feedback.
Warmly,
Sasha

REPLY
saski | @saski | Mar 10, 2022
In reply to @melody12 "Wished I was in Australia to visit your mum, because if she is as sweet as..." + (show)
@melody12

Wished I was in Australia to visit your mum, because if she is as sweet as you are for asking this than she must be a great mum. I am double vac., w/no after affects from booster. Prayers your message reaches someone soon!

Jump to this post

Hi Melody!
Yes she is the most amazing, wonderful person!
Thanks for the compliment 🙂
Warmly
Sasha.

REPLY
karinlayman27 | @karinlayman27 | Mar 10, 2022
In reply to @saski "Hi everyone. I am hoping some of you lovely people might be able to help. My..." + (show)
@saski

Hi everyone.
I am hoping some of you lovely people might be able to help.
My Mum has to have open heart surgery next week, and the hospital has a strict policy around visitors being double vaccinated.
I cancelled my vaccination appointment because of my fears that my SFN would get worse. As a consequence, I am not permitted to visit Mum.
I am applying for a temporary exemption to be filed with the Australian government.
I am seeking communication with people who have had the link between worsening of neuropathy symptoms and vaccination confirmed if not suspected with their treating doctor.
The criteria for formal exemption in Australia are very narrow, so I have to put up a persuasive argument around balance of probabilities re this link. Because all of this is new, there is no substantial body of evidence that definitively shows a causal connection.
I can leave my email here but am not sure what the protocol is regarding that.
I appreciate any feedback.
Thanks,
Regards,
Sasha

Jump to this post

Unfortunately I did have the booster last November and the following day had blood clot in my left leg by my ankle and could hardly walk . Since then there was some improvement but my feet and ankles have tingling pins and needles and ache considerably. My Internest said there could be a link to the booster and my symptoms since she has seen it in other patients . I originally started researching here on the Mayo website about the link and you might see my original post inquiring in to the possible correlation . Whatever you decide I wish you and your mother healthy success . Karin Layman

REPLY
silvern12 | @silvern12 | Mar 10, 2022

Mine got worse after booster that’s when tingling and electricity like feeling started

REPLY
taml | @taml | Mar 12, 2022
In reply to @saski "Hi everyone. I am hoping some of you lovely people might be able to help. My..." + (show)
@saski

Hi everyone.
I am hoping some of you lovely people might be able to help.
My Mum has to have open heart surgery next week, and the hospital has a strict policy around visitors being double vaccinated.
I cancelled my vaccination appointment because of my fears that my SFN would get worse. As a consequence, I am not permitted to visit Mum.
I am applying for a temporary exemption to be filed with the Australian government.
I am seeking communication with people who have had the link between worsening of neuropathy symptoms and vaccination confirmed if not suspected with their treating doctor.
The criteria for formal exemption in Australia are very narrow, so I have to put up a persuasive argument around balance of probabilities re this link. Because all of this is new, there is no substantial body of evidence that definitively shows a causal connection.
I can leave my email here but am not sure what the protocol is regarding that.
I appreciate any feedback.
Thanks,
Regards,
Sasha

Jump to this post

Any luck now that the huge list of pfizer vaccine side effects has been released by court order. Can't wait for Moderna side effects to be opened up.. Please let us know how things work out and prayers for your Mom.... thank you for your input,

REPLY
1 reply
selene53 | @selene53 | Mar 12, 2022
In reply to @taml "Any luck now that the huge list of pfizer vaccine side effects has been released by..." + (show)
@taml

Any luck now that the huge list of pfizer vaccine side effects has been released by court order. Can't wait for Moderna side effects to be opened up.. Please let us know how things work out and prayers for your Mom.... thank you for your input,

Jump to this post

Where would I able to access this information? Thanks.

REPLY
1 reply
taml | @taml | Mar 14, 2022
In reply to @selene53 "Where would I able to access this information? Thanks." + (show)
@selene53

Where would I able to access this information? Thanks.

Jump to this post

I believe on you tube there is a Drbeen and Dr Campbell that try to explain the results of released documents. more to be released. There may be more info now on line if you check " Pfizer documents released on court order"
Thank you

REPLY
carlos22 | @carlos22 | Mar 26, 2022

I have had Neuropathy for about 10 years now.It wasnt so bad for years and never affected my sleep.I have had 2 shots of Astrazeneca in 2021 and a booster of Moderna in January this year.My feet are burning more , prickling up the back of my legs , buttocks, one night it was into my arms and back, I have also noticed my muscles are feeling weak, I go to the gym and push them , it seems ok but they still feel weak.I am seeing a specialist on Wednesday 30th March.

REPLY
2 replies
selene53 | @selene53 | Mar 27, 2022
In reply to @carlos22 "I have had Neuropathy for about 10 years now.It wasnt so bad for years and never..." + (show)
@carlos22

I have had Neuropathy for about 10 years now.It wasnt so bad for years and never affected my sleep.I have had 2 shots of Astrazeneca in 2021 and a booster of Moderna in January this year.My feet are burning more , prickling up the back of my legs , buttocks, one night it was into my arms and back, I have also noticed my muscles are feeling weak, I go to the gym and push them , it seems ok but they still feel weak.I am seeing a specialist on Wednesday 30th March.

Jump to this post

I would say many people are experiencing this after covid vaccinations. I had 3 pfizer vaccines, no problems. I had a 4th due to my immune state and a few hours later...numbness and tingling in feet, by morning up to my knees, in my fingertips, twitching sensations and sometimes feel very weak in leg. I did not have this before shot. It has been 2 months of this now. Been to neurologist, general doctor and spoke to my oncologist. I have had blood tests , MRI of neck, EMG and muscle/nerves tudies. Everything normal. Each of my doctors believes it is a vaccine reaction that will "eventually" go away. No one has had an explanation of what it is or why it's happening. Many people around the world have reported neuropathies after covid vaccinations. As one of my doctors said, "new disease, new vaccines, we just don't know". I am hopeful this will all soon pass. And as I have had many friends die of covid before the vaccine, I am sure they would exchange numbness and tingling to be alive again. Anyway, I wish you the best. Keep us updated.

REPLY
dipperlip1 | @dipperlip1 | Apr 14, 2022
In reply to @jlander "I also have the same concerns, except I was diagnosed with erythromelalgia in 2018. It started..." + (show)
@jlander

I also have the same concerns, except I was diagnosed with erythromelalgia in 2018. It started in 2017, it then became dormant the fall of 2018, but surfaced again this past November 2020 and I have had flare since then. I have not resorted to medications other than aspirin, a topical cream and ice pack but may be looking into other medications after I give it another few months to see if it gets under control again. This still all new to me! I am 74. I have read a lot of comments on erythromelalgia and understand my pain and flare is not as bad as many people face but it is still there. I have wondered if anyone with neuropathy and/or erythromelalgia (specifically) has received the Covid vaccine and what has been your results. Is there a erythromelalgia area I should be posting to instead? I am new to this Mayo site. Thank you.

Jump to this post

I was diagnosed with erthyromelalgia at Mayo's in 2006. After 3 - 4 years it got better and I was able to wear shoes or go outside in the summer without coming in and putting my feet on a ice pack. This started after my lumbar fusion in 2005. Then in 2017 a had a hip replacement and it got a little worse. In 2019 I had a second back fusion and I developed neuropathy. After my second hip replacement in 2021 my erthyro and neuropathy got much worse. I also had the Covid vaccinations and that also contributed to my discomfort. I also suffer from Reynauds. My toes or either blue/purple or red and hot up to my ankles. Nights are very bad. My Neurologist just wants to increase the Gabapentin which I am against due to the side effects. I now have a appointment with a new Neurologist in June. Hope to get a answer. In the meantime I am holding off on the second buster

REPLY
View MoreView Less
Please sign in or register to post a reply.