Anyone had a problem with neuropathy after receiving the vaccine?

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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Profile picture for Sue, Volunteer Mentor @sueinmn

Wow - Lot's of room for chatting here.
As for the EMG, when I had my first one, many years ago, it was done by a tech who was also a nun - she could have been my mean old Latin teacher! She kept telling me "Don't be a baby" "This doesn't hurt" "Offer it up" (if you're an old Catholic school kid you've heard it before). I avoided them like the plague for years - then the next tech was so gentle and reassuring it was amazing - and the pain was much less!

Then there is the matter of the symptoms starting up suddenly - in the world of inflammation, there is a strong theory that any "jolt" to your immune system can cause a reaction to which you are predisposed to suddenly flare up. For example, in addition to vaccines, inflammatory reactions can occur after a virus or infection, surgery, or an unrelated injury.

I believe, from what I have read here on Connect, both about vaccine reactions and neuropathy and PMR, that the exact "cause" may never be known, but symptoms can appear in a similar way. For example, people often first experience neuropathy symptoms after their bodies are stressed by surgery. It sounds like your docs may be thinking this too.

If the only place I ever read about the Covid vaccines was here on Connect, I would be afraid because of so many symptoms being reported here. But like your neuro, I believe the reactions are very rare. For example, over 300,000,000 doses of vaccine have been given in this country, but there are only 428,000 reports of reactions in VAER, and about 75,000 are considered serious. That's a VERY low percentage - it's just that people with reactions come to Connect looking for answers. In fact, in the Covid-19 group, there are about 1000 people, our of 100,000+ Connect members. Of course, symptoms and illnesses don't feel rare when they affect us!

Finally, please get your doc to report this to VAERS - don't waut for a consensus. The more data they have, the better we will all know the vaccines.

I hope your symptoms subside! Please let me know in a few weeks how you are doing.
Sue

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It definitely could be caused by the surgery, but that was May 18th and my symptoms started abruptly one week after my first vaccine. So who knows. Seems like a weird coincidence, but I'll wait for the experts to weigh in once I have my results. I know it's "rare," but almost half a million reports and 75,000 are serious ... that's a big deal to me. If you are one of the ones affected, the statistics don't matter. The CDC site confirms there are reported cases of new neuropathy with the JJ vaccine ... so logic follows that it may be possible with the other vaccines as well. I'm not thinking I got poisoned by a bad vaccine or anything ... just that my body is in an overdrive response because of my pre-existing auto-immune condition. I will definitely report next week after I get my timeline on paper to help with their questions. And I'll post again when I get answers if they are helpful. Thanks so much for the response and good wishes!

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Profile picture for dablues @dablues

I had a MRI of the Lumbar Spine and a Nerve Study test done yesterday. I don't know what the outcome is yet since no one called me. The Nerve Study test was not painful for me, but I have a high tolerance. They kept asking if everything was ok. Very professional. I have had this done before. To me, I don't feel the pain was bad. It was like using a TENS unit but a higher frequency.

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@dablues I’m wondering if what you had was a nerve conduction velocity study (NCVS). I have had that as well as EMG. NCVS was not painful and as you said, felt like very mild electrical shocks. EMG on the other hand was a whole different ballgame, extremely painful and there was blood involved. 😬

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Finally was able to see a neurologist yesterday for my neuropathy. Was a short appointment. He listened to my symptoms and concerns. Would not in any way confirm or suggest that this was, or even maybe was, a reaction to the vaccine or having Covid. He says neuropathy can start at any time and I can’t try to pinpoint why? I’m not swayed or convinced otherwise . I’m 53, very healthy with no underlying health issues or trauma. This all started within a week of 2nd vaccine injection. All blood work is normal. Anyway….. the old standby, take more gabapentin, have an EMG nerve study to make sure it is indeed neuropathy….. he also said very unlikely that it will resolve or get better. I’ve decided to, for now, skip the nerve study and not put myself thru the pain and anxiety and expense, as it sounds like treatment plan won’t change. I’m not in a lot of pain, and most of burning is at night. I purchased CBD from a CBD store, came in a roll on liquid mixed with different oils. It’s very cooling upon application. Seems to relieve the burning enough for me to fall asleep, so I’ll stick with that until it no longer works. I’m lucky my husband is an MD, and very much into holistic and natural remedies. I also have a brother who is a PT and has given me lots of advice. Says to not give up yet, that nerves can heal, it’s just a very slow process, stay active. I have started to exercise in my pool and do find relief in this . Again, not in a lot of pain, just more of being irritated. Lucky I guess. I am very pro vaccine, but I don’t think I will be getting a booster shot. Having Covid last winter was not pleasant, but this sucks too.

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Profile picture for amyd67 @amyd67

Finally was able to see a neurologist yesterday for my neuropathy. Was a short appointment. He listened to my symptoms and concerns. Would not in any way confirm or suggest that this was, or even maybe was, a reaction to the vaccine or having Covid. He says neuropathy can start at any time and I can’t try to pinpoint why? I’m not swayed or convinced otherwise . I’m 53, very healthy with no underlying health issues or trauma. This all started within a week of 2nd vaccine injection. All blood work is normal. Anyway….. the old standby, take more gabapentin, have an EMG nerve study to make sure it is indeed neuropathy….. he also said very unlikely that it will resolve or get better. I’ve decided to, for now, skip the nerve study and not put myself thru the pain and anxiety and expense, as it sounds like treatment plan won’t change. I’m not in a lot of pain, and most of burning is at night. I purchased CBD from a CBD store, came in a roll on liquid mixed with different oils. It’s very cooling upon application. Seems to relieve the burning enough for me to fall asleep, so I’ll stick with that until it no longer works. I’m lucky my husband is an MD, and very much into holistic and natural remedies. I also have a brother who is a PT and has given me lots of advice. Says to not give up yet, that nerves can heal, it’s just a very slow process, stay active. I have started to exercise in my pool and do find relief in this . Again, not in a lot of pain, just more of being irritated. Lucky I guess. I am very pro vaccine, but I don’t think I will be getting a booster shot. Having Covid last winter was not pleasant, but this sucks too.

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@amyd67, The Foundation for Peripheral Neuropathy lists some alternative treatments you might find helpful.
https://www.foundationforpn.org/living-well/integrative-therapies/

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On 2nd round of prednisone. Lower dose this go round, but it's day 3 and have major relief! Feet feel almost normal... very reduced tingling, no burning, slight calf tingling, no swelling of feet/calves yesterday after being on my feet all day. Reduced gabapentin for the last 2 days simply because it hasn't been necessary.

This is the day (3) it all fell apart last time, so fingers crossed that it continues to improve instead of going the other direction.

Seeing the podiatrist on Friday, hopefully she's found a neurologist referral of some sort. Will keep in touch with Primary. Still have 2 already paid for chiropractic visits I'll utilize at some point.

Just need to know how to proceed. Is it the vaccine? Is it lower back problems? It is just something due to age (54)?

Apparently prednisone is not the long term answer even though it's helping in the short term. Hopefully, the information that prednisone does SOMETHING to the problem will enlighten someone to what the underlying issue is.

Here's hoping.

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Profile picture for lk61 @lk61

@dablues I’m wondering if what you had was a nerve conduction velocity study (NCVS). I have had that as well as EMG. NCVS was not painful and as you said, felt like very mild electrical shocks. EMG on the other hand was a whole different ballgame, extremely painful and there was blood involved. 😬

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I had an EMG last year and was not painful for me at all. I didn't have any blood involved. I suppose it depends on who is doing the test or how the patient can handle it.

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After having several EMG's, I have concluded it is in the skill of the person doing the test, just like acupuncture or phlebotomy.
Sue

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Profile picture for littlenoise @littlenoise

On 2nd round of prednisone. Lower dose this go round, but it's day 3 and have major relief! Feet feel almost normal... very reduced tingling, no burning, slight calf tingling, no swelling of feet/calves yesterday after being on my feet all day. Reduced gabapentin for the last 2 days simply because it hasn't been necessary.

This is the day (3) it all fell apart last time, so fingers crossed that it continues to improve instead of going the other direction.

Seeing the podiatrist on Friday, hopefully she's found a neurologist referral of some sort. Will keep in touch with Primary. Still have 2 already paid for chiropractic visits I'll utilize at some point.

Just need to know how to proceed. Is it the vaccine? Is it lower back problems? It is just something due to age (54)?

Apparently prednisone is not the long term answer even though it's helping in the short term. Hopefully, the information that prednisone does SOMETHING to the problem will enlighten someone to what the underlying issue is.

Here's hoping.

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Well I can say with a high degree of certainty that it’s not the COVID vaccine because it never is.

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Profile picture for bustrbrwn22 @bustrbrwn22

Well I can say with a high degree of certainty that it’s not the COVID vaccine because it never is.

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What does this mean? Since it's relatively new, how can it "never" be? Seems to me that the side effects, as evidenced in this thread, are still somewhat unknown.

I'm not here to say that the vaccine IS the culprit, but the coincidence deserves some investigation.

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Profile picture for joeyd5641 @joeyd5641

How is everyone who got a new onset or worsening of neuropathy from the vaccine doing now? I seem to be having some let up the last few days , but I am megadosing Alpha Lipoic acid, b12 and Vitalituses Palmitoylethanolamide . These have worked in the past for me also. I recommend for anyone with Neuropathy. I did report my case to VAERS. Let me know if any of you are feeling better after the neuropathy induced by the vaccine. If there are 15 or so of us here, there must be so many more suffering after the shot also. I am glad though to be protected from Covid, but holy cow there should be a warning for the neurological possiblities. Does anyone know anyone who didnt have any previous neuropathy that now has it from the shot? Regards, Joe

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Hi, I know I'm late to the party here but I'm trawling through the internet trying to get answers after my first dose of Pfizer. As far as I'm aware I have no underlying health conditions and no neuropathic events in the past. Within 36 hours of receiving the vaccine I started with a range of strange neuropathic symptoms. 3 weeks on the pins and needles, numbness and pain have gone but I'm left with a mild tremor, a very sensitive mouth, slightly blurred vision and red palms. My doctor has advised me not to get the second dose of Pfizer but mentioned maybe getting another vaccine. I'm quite reluctant without actually knowing what happened with that first dose and whether the effects are lasting

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