COVID vaccines and neuropathy
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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Good luck with the results. I hope I have the same experience!
I hope I get the second doctor!
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!
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!
@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. 😬
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.
@amyd67, The Foundation for Peripheral Neuropathy lists some alternative treatments you might find helpful.
https://www.foundationforpn.org/living-well/integrative-therapies/
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.
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.
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