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?

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kimas | @kimas | Aug 12, 2021
In reply to @dablues "I had a MRI of the Lumbar Spine and a Nerve Study test done yesterday. I..." + (show)
@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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Good luck with the results. I hope I have the same experience!

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kimas | @kimas | Aug 12, 2021
In reply to @bustrbrwn22 "I’ve had 2 EMG’s. One was very painful and the other not. The doctor I saw..." + (show)
@bustrbrwn22

I’ve had 2 EMG’s. One was very painful and the other not. The doctor I saw where I had no pain said they shouldn’t be painful and if I feel pain tell him and he’ll stop immediately and that he was there to serve me. How often does that happen? So I think it depends on the doctor administering. The good doc said he could always find a different way to get the info if one particular way was too painful.

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I hope I get the second doctor!

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kimas | @kimas | Aug 12, 2021
In reply to @lk61 "@kimas, I’m sorry to report that EMG was very uncomfortable for me. I’m not sure if..." + (show)
@lk61

@kimas, I’m sorry to report that EMG was very uncomfortable for me. I’m not sure if my state of high anxiety may have made it worse. It’s the ultimate irony when a physician is telling you to relax while he is sticking needles into your nerves. However from what I’ve read, everyone does not find it to be as bad as I did. Hopefully you’ll be one of those! They tested upper and lower extremities on both sides and several places around my spine, to the best of my memory. Was trying to block it all out. I, too, have run the gamut of testing. Have had 2 MRI’s which show many degenerative changes in both my lumbar and cervical spine. None of these should have caused my symptoms to start up overnight, however. Currently, I have good days where things are on a very low simmer - just occasional burning or other mild sensations, and not much twitching. And then there are days like yesterday, when it feels like some kind of storm is taking place in my body. It has caused me no end of emotional distress. I now have severe health anxiety - something I never had before. People who say the risks of the vaccine are much worse than any possible side effects - maybe they are right, but they just don’t know what it’s like to have their lives changed overnight. I am not anti-vaccine. On the contrary, I might even get a booster if needed. All this happened to me after the first dose. My neuro advised me that “reactions like this” (whatever that means) are so very rare and quite unlikely to happen again. So I got the 2nd dose and thankfully there was no worsening. As for reporting, I have not yet, but fully intend to very soon. My reason for holding off has mainly been to get consensus from the docs. I wish you the best with your testing and search for answers.

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I can totally relate. Yesterday I could barely walk and was in tears. Today I'm sore but up and around. So frustrating. I'm in such a flare. I'm also not anti-vac at all. I've had them all! But I personally will not get a booster after this. At least until a lot more is known about autoimmune issues and this particular vaccine. And also pending what my tests show. I'm glad you plan to report and hope you get some relief soon, regardless of what's causing your chronic pain! I had an EMG in my arms years and it was very painful ... I almost passed out. And I have a very high pain tolerance with all of the painful tests I've had done. So perhaps it was the doctor's method? I'm hoping!!!! Dreading the test, but hoping for a report that will give my doctors some guidance for pain relief!

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kimas | @kimas | Aug 12, 2021
In reply to @sueinmn "Wow - Lot's of room for chatting here. As for the EMG, when I had my..." + (show)
@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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lk61 | @lk61 | Aug 12, 2021
In reply to @dablues "I had a MRI of the Lumbar Spine and a Nerve Study test done yesterday. I..." + (show)
@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.

Jump to this post

@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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1 reply
amyd67 | @amyd67 | Aug 12, 2021

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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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Aug 12, 2021
In reply to @amyd67 "Finally was able to see a neurologist yesterday for my neuropathy. Was a short appointment. He..." + (show)
@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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littlenoise | @littlenoise | Aug 12, 2021

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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1 reply
dablues | @dablues | Aug 12, 2021
In reply to @lk61 "@dablues I’m wondering if what you had was a nerve conduction velocity study (NCVS). I have..." + (show)
@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. 😬

Jump to this post

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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Mentor
Sue, Volunteer Mentor | @sueinmn | Aug 12, 2021

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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