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.

this thread is really only for people with neuropathy

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@johnbishop

Hi Helen @helennicola, I had not heard of the insoles. I do use insoles in my shoes mostly felt or ones for warmth in the Winter. The Naboso Neuro Insoles may be worth a shot but they do cost more than my shoes 🙂 The reviews on Amazon seem to be good. It would be interesting if someone has experience. https://www.amazon.com/Insoles-Stimulate-Improve-Neuropathy-Textured/dp/B07B4J41CB/

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Ha ha, I only knew of them from a woman who posted on FB that swears by them and thought I’d pass it along, that does sound like a lot to pay for insoles! Helen

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@lacy2

Hi artist01 Hi fellow Canadian - are you in assisted living here or USA? I am in Ontario.
From reading comments here and elsewhere, it does seem that some recipients of the vaccine are getting quite ill and some side effects have not left them after a few weeks, which must be very scary for them. However, have not necessarily given the name of the brand they received.

I am so happy to read that not one of fifty residents where you live had a very bad reaction... so am wondering which vaccine you and others were given (name) and also what brand the folks on here got who had bad reactions (someone had "truly frightening" reaction).
Am having another bed day so will do some Internet searching to find out if there is a comparison list of each of the four vaccines and if they show which ones are resulting in most "reactions" but doubt if they even have those numbers tabulated given that millions of people are getting the "jabs" and not everyone who had a "very bad" reaction is reporting it....seems to be "word of mouth" right now?
Thanks for the positive feedback ... stay safe, J.

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@lacy2 Hello again Lacy. I wrote you a long response to your questions this a.m. but LOST it just as I was finishing! I'm only working with the limitations of a cell phone since my computer died a while ago. So frustrating sometimes.
Anyway, I live on Vancouver Island in British Columbia. The first vaccine administered here at my Assisted Living seniors' residence was Moderna.
In British Columbia, the decision has come down from The Powers That Be that we are scheduled for the 2nd dose 16 weeks from the first dose. Troubling, but hopefully the scientists are correct in this decision.

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@ess77

@artist01 Love Vancouver Island! Love British Columbia! So lovely and interesting. A beautiful part of the continent.

FYI: I got the 1st Moderna shot in Jan at Mayo Clinic Florida. with no bad side effects. I was wonderfully surprised. The 2nd one was a completely different matter. After a couple of hours, I had 18 hours of a very ill response, with extreme fatigue, could barely move and every muscle and bone in my body ached or hurt. Headache, feet/legs/joints/back/spine/hands and fingers.....generally a pretty sick girl. I also had a fever. I finally felt so badly, I took an extra strength tylenol and went back to bed...I never do that unless I'm truly ill. I slept several hours and awoke sweating profusely, with a fever broken. I was fine after a day or so. I kept reminding myself what was happening in my body. I was making lots and lots of antibodies to the covid19 virus, so any temp side effects were certainly worth the discomfort. I was very unlikely to get covid19 now, so I was thankful for the shot and the side effects.

That may not be a medically correct assessment, but it makes sense to my non-medically trained brain. I have some good protection now I didn't have before the shot. Thank you, everyone who helped get that vaccine in my arm!

Wish you well on this vaccination journey. The whole thing is truly amazing.

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@ess77 I personally think you're spot on with your non-medical assessment, Elizabeth! That after effect you experienced was a good thing, according to "them what know". You've made scads of antibodies and should be in good shape to fight any Covid-19 virus that dares to come your way. That's how I understand the reading material anyway. Good for you. I'm looking forward to my second shot---with dread!! 😆

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@joybringer1

@artist01and @lacy2, It finally sunk into my aging brain that your vaccines are spaced at sixteen weeks because there is not enough vaccine in Canada right now. I hope for more vaccine for all of you. My guess is the Moderna people are anxious to get the vaccine to as many as possible. Perhaps someone will record reactions and follow-up. There is so much to learn about all of the vaccines. May you stay well and hopeful as you wait. @joybringer1

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@joybringer1 You are perfectly correct! It's what I attempted to post this morning, and lost into the @%$#!!! ethers!
P.S. I have most of the diseases listed on Mayo Clinic Connect site, including Neuropathy, GCA, Diabetes, IBD, heart disease, high blood pressure, strokes (smallish), blood clot issues, inoperable brainstem AVM, ummm,
You'd think if anyone was going to have a bad reaction to the Covid vaccine it would me me! 😆

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@joeyd5641

this thread is really only for people with neuropathy

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Joey, etc. etc. I Don’t know if there is any connection but I think I read that gabapentin makes your body more vulnerable to viruses and since the vacs utilize RNA to trick the body into thinking you have the virus it causes an immune response such as we are experiencing as a worsening of our symptoms. It’s hard for me to know if I am just having a normal progression but don’t usually believe in coincidences. Helen

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@avmcbellar

Hi @jimhd nice to hear from you. I would give another stimulator a chance first before trying the pump. What is your reasoning for the pump, ease? Keep in mind no matter how many times you press the button for medication you will never get more than the amount prescribed. As for the vaccine, the side effects are scary. I don’t think the doctors have a handle on it because they just repeat what was said to them( mostly by the vaccine manufacturers). We are all different when it comes to medical history. We look at what we can tolerate to make our decision. Wish you the best. Toni

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@avmcbellar There are a couple of reasons for considering a pump, the primary one being replacing oral medications with more effective intrathecal delivery. The research I've done has indicated that the pump requires as little as 10% of the oral dose. Of course, there's not a lot of certainty in any medical treatment, as no two people are the same. My neurologist mentioned to me this morning to ask about the possibility of a bolus delivery option to treat breakthrough pain. I understand that once the therapeutic dosage is determined, it works automatically, and is a safer treatment in terms of abuse or overdose.

My wife and I are scheduled to get the vaccine on the 30th. I'm more than a little concerned about the impact it might have on my neuropathy. I don't know which one is being offered here, and I need to schedule an appointment for the 2nd shot.

I've never had any reaction to vaccines until the 2nd shingles vaccine a month ago. The injection site is still sore if I lie on my left side, though I didn't have any immediate reaction. I'm hopeful that the covid vaccine will be effective but benign.

You wrote in the past about eye exercises. I asked my neurologist about that, as well, and he put in his notes to consider it, whenever I'm ready. Prisms corrected the double vision for a month or so, but it returned, and sometimes I see 3 images. When I asked the ophthalmologist what else can be done, he said get used to it. Not a very helpful response. Perhaps you could recommend some research on the subject. Preferably in layman's language.

Jim

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@busch

I have not heard or read about warning signs from neurologists about side effects from the covid vaccine. People with radiculopathy and neuropaty live with their condition well aware of any changes to the contrary. Okay, so the vaccine is great and keeps us alive but do all these negative and strange symptoms after the vaccine go away, do damage or what? My personal experience after the first shot was truly frightening. Should one just dismiss this and go ahead with the full procedure? It seems there is no guidance to these unknowns. I feel like a guinea pig.

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@busch In my opinion, we should all be taking the advice of our personal neurologist, or other specialists involved with our individual case.

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I often lose long messages just when I'm almost done, too, @artist01 . I also think of questions to ask my doctor after the appointment. Today I should have brought up the covid questions with my neurologist...and I should have asked about the prednisone I take, which is an immuno suppressant. I wonder if Renee @faithwalker007 would have insight into that. I had to stop taking it before a surgery. So many questions, so many conflicting answers, if any. I can send him those questions through his patient portal.

I'm really hoping that the vaccine won't make my very painful idiopathic small fiber sensory peripheral polyneuropathy and autonomic neuropathy.

Jim

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@jimhd

I often lose long messages just when I'm almost done, too, @artist01 . I also think of questions to ask my doctor after the appointment. Today I should have brought up the covid questions with my neurologist...and I should have asked about the prednisone I take, which is an immuno suppressant. I wonder if Renee @faithwalker007 would have insight into that. I had to stop taking it before a surgery. So many questions, so many conflicting answers, if any. I can send him those questions through his patient portal.

I'm really hoping that the vaccine won't make my very painful idiopathic small fiber sensory peripheral polyneuropathy and autonomic neuropathy.

Jim

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@jimhd Hello Jim
Nice to meet someone else who loses almost-typed messages on Mayo Clinic Connect site! I checked it out with my server and was told it was the fault of my phone, and no help was provided through them. I've learned my own devious method of retrieving my unfinished message, as follows:
1. Click on the three small vertical lines at bottom left of screen;
2. Three or more smaller screens you've previously worked on appear;
3. Scroll sideways to locate your "lost"
screen;
4. Click on that screen, and Voila!
You're back where you can finish!
Good luck, Jim. Let me know if this works for you. My best, Laurie

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