1. < Neuropathy
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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?

Interested in more discussions like this? Go to the Neuropathy Support Group.

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Colleen Young, Connect Director | @colleenyoung | Nov 23, 2021

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Profile picture for lk61
lk61 | @lk61 | Nov 24, 2021
In reply to @lisa53 "It was gone entirely before the vaccinations. I should note that they flared my symptoms but..." + (show)
Profile picture for lisa53 @lisa53

It was gone entirely before the vaccinations. I should note that they flared my symptoms but not all my symptoms. If you don't mind a metaphor. If my symptoms were like a band, it is like the shots flared up the band - but some of the band members sat quietly. But the shots brought a couple of new members along - ones I had never heard play before. They played dully compared to the old band. Then, some of them stopped entirely. Only the new band members are still playing, and even one of them is quiet now.
I am sorry, I am a creative, and this is how my mind works.
Imagine the horror my doctors must view my descriptions of my symptoms with. Sometimes, I just get stared at. 🙂

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@lisa53 I love your metaphor! And I get it perfectly. I have a band of my own!

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dhamil | @dhamil | Nov 24, 2021
In reply to @lk61 "@dhamill I plan to get a flu shot tomorrow. I’ll report back in a few days...." + (show)
Profile picture for lk61 @lk61

@dhamill I plan to get a flu shot tomorrow. I’ll report back in a few days. I’ve been hesitant this year. Haven’t missed a flu shot in 30 years but after Pfizer induced neuropathy I am a different person. The flu reports are already bad. I’m not sure if it’s media hype or what, but I’m going to take the plunge. Fingers crossed.

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I hope you are doing well after your flu shot. Still not sure if I will get mine or not. Take care and stay well.

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1 reply
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lk61 | @lk61 | Nov 24, 2021
In reply to @dhamil "I hope you are doing well after your flu shot. Still not sure if I will..." + (show)
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I hope you are doing well after your flu shot. Still not sure if I will get mine or not. Take care and stay well.

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@dhamil, I got my flu shot Saturday and so far, no effects on the neuropathy at all. (Oh darn it didn’t just magically disappear 🤣). I’m still waffling on a Covid booster. Some days I think never again, other days I’m more worried about getting Covid. 😣

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2 replies
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dhamil | @dhamil | Nov 24, 2021
In reply to @lk61 "@dhamil, I got my flu shot Saturday and so far, no effects on the neuropathy at..." + (show)
Profile picture for lk61 @lk61

@dhamil, I got my flu shot Saturday and so far, no effects on the neuropathy at all. (Oh darn it didn’t just magically disappear 🤣). I’m still waffling on a Covid booster. Some days I think never again, other days I’m more worried about getting Covid. 😣

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That’s great! I can definitely relate about the covid vaccine. I waver day to day myself. So scared of getting covid but just as scared of making my neuropathy worse! What a dilemma to be in! Will be somewhat relieved when the antiviral meds are available.

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katrina123 | @katrina123 | Nov 28, 2021

Really? Your doctor is more concerned regarding neuropathy than deadly covid?

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centre | @centre | Nov 29, 2021
In reply to @lk61 "@dhamil, I got my flu shot Saturday and so far, no effects on the neuropathy at..." + (show)
Profile picture for lk61 @lk61

@dhamil, I got my flu shot Saturday and so far, no effects on the neuropathy at all. (Oh darn it didn’t just magically disappear 🤣). I’m still waffling on a Covid booster. Some days I think never again, other days I’m more worried about getting Covid. 😣

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Although fully vaccinated, staying out of stores, using Walmart pick-up into my trunk for groceries, pharmacy delivery for meds, curbside pick-up to back seat for restaurant food now and then, and faithful masking/distancing, no visiting indoors- I got break-through COVID- sick, sick, sick. Luckily was eligible for IV monoclonal antibodies, got better fast. Gave it to my husband, despite isolation and all precautions, he was also eligible also for the IV, got it on Day 2, symptoms very mild.
In our area now, the IV antibiotics are very precious- my rheumatologist told me 2 wks ago while at appt, that if you are eligible, you go into a lottery pool, if you are picked, you have to go to the main hospital of the health system (2 hour drive away) to receive the IV. Maybe check how it is in your area before declining the booster. CDC/my PCP says you have to wait 90 days after IV treatment to receive booster, we’re signed up for next week.

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1 reply
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annievee | @annievee | Nov 29, 2021

I've had both vaccines and the booster (Moderna) and have had no change in my neuropathy.

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ninette | @ninette | Nov 29, 2021
In reply to @johnbishop "Hello @kathleen123, Welcome to Connect. I'm really sorry to hear that your first Pfizer COVID vaccine..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

Hello @kathleen123, Welcome to Connect. I'm really sorry to hear that your first Pfizer COVID vaccine made your neuropathy symptoms worse. I'm scheduled for my 2nd dose Feb 26th. I don't think anyone can answer your question about the side effects and I agree with your internist that there just is not enough data to know. The CDC does have some information but I think it's still too early.

Local Reactions, Systemic Reactions, Adverse Events, and Serious Adverse Events: Pfizer-BioNTech COVID-19 Vaccine:
- https://www.cdc.gov/vaccines/covid-19/info-by-product/pfizer/reactogenicity.html

My personal reason for getting the vaccine and the second one also is that which would be worse - getting COVID or having my neuropathy flare which may not be desirable but the lesser of two evils (IMHO). You might find the following Q&A helpful.

Mayo Clinic Q and A: Neurologic function and COVID-19: https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-neurologic-function-and-covid-19/

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Hi, I'm Ninette from Antwerp (Belgium). I have SFN after a spinal stroke in 2018 but had learned to live with the pain more or less. Then after my first Moderna shot in April of this year, I developed leg & feet cramps , SFN got a lot worse and it lasted for 4 weeks. I didn't know Moderna was the cause. A month later, a week after my second dose, the same thing happened and now it lasted 5 weeks. I started to see the link. Almost 3 weeks ago I had my Moderna booster and guess what... the cramps and nerve pain (and even bladder issues) are back in full effect. I wonder for how long this time around. Of course this is still preferable to getting Covid, but I wish there would be more research into this and it would be better known (preferably without scaring the hesitating people away) so we can be reassured that this is 'only' temporary and without further damage. Even doctors don't know about this, they think I'm overreacting (well, my nerves sure are). Not really looking forward to shot nr 4- which surely is in our future somewhere. These are strange times to live in!

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2 replies
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Mentor
John, Volunteer Mentor | @johnbishop | Nov 29, 2021
In reply to @ninette "Hi, I'm Ninette from Antwerp (Belgium). I have SFN after a spinal stroke in 2018 but..." + (show)
Profile picture for ninette @ninette

Hi, I'm Ninette from Antwerp (Belgium). I have SFN after a spinal stroke in 2018 but had learned to live with the pain more or less. Then after my first Moderna shot in April of this year, I developed leg & feet cramps , SFN got a lot worse and it lasted for 4 weeks. I didn't know Moderna was the cause. A month later, a week after my second dose, the same thing happened and now it lasted 5 weeks. I started to see the link. Almost 3 weeks ago I had my Moderna booster and guess what... the cramps and nerve pain (and even bladder issues) are back in full effect. I wonder for how long this time around. Of course this is still preferable to getting Covid, but I wish there would be more research into this and it would be better known (preferably without scaring the hesitating people away) so we can be reassured that this is 'only' temporary and without further damage. Even doctors don't know about this, they think I'm overreacting (well, my nerves sure are). Not really looking forward to shot nr 4- which surely is in our future somewhere. These are strange times to live in!

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Hi @ninette, Welcome to Connect. Sorry to hear you had cramps and nerve pain side effects from your Moderna vaccine. I did see that Belgium has a reporting form so that you can report your side effects to the government. I think that helps provide data so that they know what side effects people are having and hopefully do some research.

Coronavirus: new online form to report suspected adverse reactions to a COVID-19 vaccine: https://www.famhp.be/en/news/coronavirus_new_online_form_to_report_suspected_adverse_reactions_to_a_covid_19_vaccine

Have you reported the side effects to the Federal Agency for Medicines and Health Products (famhp)?

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