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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mcd2021 | @mcd2021 | Aug 21, 2021
In reply to @sueinmn "I had the same reaction - to not only the Covid vaccine, but also the Quadravaletn..." + (show)
@sueinmn

I had the same reaction - to not only the Covid vaccine, but also the Quadravaletn flu vaccine in Oct 2020 and the Shingrix vaccine in Jan 2020. My body apparently reacts to the immune system activation with a hyper inflammatory flare. It affects ALL of me - at one point even my scalp hurt. Fortunately my doc figured this out and I am given a two week course of prednisone. That calms it down.

Some good news too. My daughter, who is immune-suppressed, received her 3rd Moderna dose on Tuesday. She had Covid in 2020, 2 doses of the vaccine in December and January, and was very ill each time. The third dose left her with a sore arm, mild aches and mild fatiguee. It just shows that a person will not necessarily react to the vaccine every time.

Sue

Jump to this post

Hi Sue, wow, that's awful to get a reaction like this to every vaccine you receive. I'm glad to hear that a two week course of prednisone calms it down for you. My doctor gave me a Medrol pack which was I think 6 days. It didn't help at all but I wonder if a regimen similar to yours might have helped more. I'll ask my doctor about it. That's wonderful that your daughter only experienced a mild reaction to her booster shot. Hopefully that third dose will give her plenty of protective antibodies. Many thanks again for your reply!

REPLY
1 reply
littlenoise | @littlenoise | Aug 21, 2021

So, here I am again. I'm wondering how the excess inflammation issue is/was diagnosed.

While my main concern was my tingling/cold/burning feet, I also had swollen fingers and excessive arthritis in my knees (I've always had arthritis in my knees that comes and goes, but is usually controlled with Aleve and Fish Oil). Now I'm wondering if the more intense flares are linked to other vaccines I've had in the past 5 years (both pneumonia shots, shingles, flu, etc.), but not as intense as the Covid, which pushed me into the neuropathy. Seems plausible, but am wondering how the theory can be proved.

After my second course of prednisone (10 mg, 3/3/3/2/2/1/1), my symptoms again went away on Day 3, but returned (but not as severely) by Day 5.

Now, 4 days after my last dose, everything is milder. My feet and calves feel like I'm wearing socks when I'm not. There's very light tingling and they sometimes feel cold ,even though it's 90+ degrees here and rarely lower than 80 degrees in my house), but the burning pain has not returned. I can now put my rings on, so my finger joint swelling has gone down significantly. I've also noticed that I can squat down at work without having to use a hand to pull myself back up... my legs/knees can propell me back upright on their own.

I think I'm officially on the mend from whatever the hell was going on.

I'm still taking the gabapentin, so maybe that's the miracle that is making me feel better, or maybe it's some combination of anti inflammatory, magnesium, fish oil, vitamin d, and b-6 supplement doing the trick. I'll eventually start alleviating these things one by one to see if I can quit taking a meal full of pills every night.

My podiatrist has recommended PT, but I'll probably avoid the expense of that as I continue to improve. If I have a setback, I'll definitely be ringing them to set up an appointment.

For now, I'd really like to know if there's some test that can pinpoint the excessive inflammatory. I'll be due for the booster in a few months (recommendation is 8 months after 2nd dose unless immunocompromised). Unless this can be diagnosed and treated, I'll be waiting as long as possible to opt in. Working in a pharmacy, and being on the frontline for testing and vaccinating, I know I'll have to protect myself eventually. I just don't want to go though this again . If there's some way to prove that's what I've experienced, maybe it can be resolved quicker with future vaccines.

Flu shot season has also arrived. I'll be getting that as soon as I dispense the first flu medication this year.

REPLY
2 replies
littlenoise | @littlenoise | Aug 21, 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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Have you tried a course of prednisone yet? Our symptoms sound so similar that I'm now wondering if we're both experiencing a blasted immune response that just needs to calm the frack down. I feel like the only thing that really helped was the prednisone; however, it could have been the slower working other stuff I've been taking all along.

I agree that this has been no walk in the park, but it hasn't hampered my ability to work, or been a severe illness of any sort. Just irritating which makes me irritable with everyone around me.

I've noticed that I opt to go through a drive through rather than walk into a store. So it's been small changes in my life, nothing earth shattering.

I did actually go to a plant nursery, plant some seedlings, and start some tomato plants last weekend. I also had my brother come over to assist with some two person chores recently, so I must be on the mend. I've let some things just slide in the past 6 months simply because I didn't want to be on my feet, even though not being on my feet did not improve anything. My "get up and go do" was just broken.

Hope you're doing well and hope to get an update from you soon.

REPLY
1 reply
amyd67 | @amyd67 | Aug 21, 2021
In reply to @littlenoise "Have you tried a course of prednisone yet? Our symptoms sound so similar that I'm now..." + (show)
@littlenoise

Have you tried a course of prednisone yet? Our symptoms sound so similar that I'm now wondering if we're both experiencing a blasted immune response that just needs to calm the frack down. I feel like the only thing that really helped was the prednisone; however, it could have been the slower working other stuff I've been taking all along.

I agree that this has been no walk in the park, but it hasn't hampered my ability to work, or been a severe illness of any sort. Just irritating which makes me irritable with everyone around me.

I've noticed that I opt to go through a drive through rather than walk into a store. So it's been small changes in my life, nothing earth shattering.

I did actually go to a plant nursery, plant some seedlings, and start some tomato plants last weekend. I also had my brother come over to assist with some two person chores recently, so I must be on the mend. I've let some things just slide in the past 6 months simply because I didn't want to be on my feet, even though not being on my feet did not improve anything. My "get up and go do" was just broken.

Hope you're doing well and hope to get an update from you soon.

Jump to this post

Thank you. Yes, the first thing my primary doc tried was a week of steroids. Felt wonderful, but as soon as course was finished, all symptoms came back. I feel the same as you. Not in pain, just a constant irritation. I go about my day as usual, have a 14 yr old still at home, so I can’t slow down yet. It irritates me more at night. And now my nose has a constant tingle so the sneezing is nonstop. I did go ahead and schedule the nerve study, just to keep in good standing with the neurologist in case things get worse and I need to be an established patient in the future. I did fill out the Moderna online form for vaccine reactions and they did follow up with an email requesting more information. That makes me feel like maybe someone is taking me seriously. Hang in there, good to know I’m not alone and going crazy.

REPLY
kzee64 | @kzee64 | Aug 21, 2021
In reply to @johnbishop "Hello @kzee64, Welcome to Connect. I'm sorry to hear that you had such a bad reaction..." + (show)
@johnbishop

Hello @kzee64, Welcome to Connect. I'm sorry to hear that you had such a bad reaction from your first Moderna vaccine but it is really good news that you are back to your normal with you 2015 diagnosis of small fiber neuropathy and autonomic dysfunction. It's also good to hear after reporting the symptoms from the first shot that the doctor called you back and you reported your symptoms to VAERS.

Now that you have made a decision to stay with family after your second Moderna shot, can you let us know if you have the same or similar symptoms after you receive the second shot?

Jump to this post

@johnbishop , Hello, I'm day 4 since receiving my 2nd dose of Moderna. I'm happy to report that I'm doing well. I did stay with a family member out of precaution as recommended by my doctor due to the serious side effects I experienced after my first Moderna shot.
I developed a bad headache 5 hours after my shot. I woke up next morning okay, a very bad headache, muscle aches, and developed a fever in the afternoon that went to 101 and of course my arm was sore. I did take Tylenol which helped the fever but not the headache.
Today I'm feeling much better, back home, a mild headache, no fever. Only thing I've noticed is some disorientation and mild difficulty with walking. I'm so relieved that I didn't experience the same reaction as my 1st dose!
I'm very happy now that I'm fully vaccinated, however I will continue to self isolate and wear my N95 mask any time I'm in the public. I was a back office medical assistant for over 20 years. I'm used to wearing a mask, so it's not a problem for me. My hope is for anyone that can to get the vaccine and stay safe!

REPLY
jboett | @jboett | Aug 21, 2021

Has anyone that has experienced long term effects from ciprofloxin leading to the FQAD Syndrome had increase of peripheral neuropathy pain or more incidents of brain fog , hallucinations after COVID vaccine ? I have been living with FQAD since multiple uses of ciprofloxin for kidney stone surgeries from 2007-2013 both via pills and IV. Also due to being Floxed instead of my tendon rupturing in my ankle etc I had an emergency retina detachment surgery in 2014 to save my vision . As part of the antibiotics given for left eye surgery I was given oflaxin which caused hallucinations , heart palipitations etc. Needless to say I had a lot of this drug which now I am paying for later in life . Constant neuropathy pain left extremities , mood swings and frequent brain fog episodes . I believe my dna markers have been affected so much coupled with more intense neuropathy pain after Pfizer vaccine , perhaps the FQ impacts and proteins in COViD immune model are not liking each other. It would be nice to know if anyone with FQAD are experiencing similar experiences .

REPLY
2 replies
Mentor
Sue, Volunteer Mentor | @sueinmn | Aug 21, 2021
In reply to @littlenoise "So, here I am again. I'm wondering how the excess inflammation issue is/was diagnosed. While my..." + (show)
@littlenoise

So, here I am again. I'm wondering how the excess inflammation issue is/was diagnosed.

While my main concern was my tingling/cold/burning feet, I also had swollen fingers and excessive arthritis in my knees (I've always had arthritis in my knees that comes and goes, but is usually controlled with Aleve and Fish Oil). Now I'm wondering if the more intense flares are linked to other vaccines I've had in the past 5 years (both pneumonia shots, shingles, flu, etc.), but not as intense as the Covid, which pushed me into the neuropathy. Seems plausible, but am wondering how the theory can be proved.

After my second course of prednisone (10 mg, 3/3/3/2/2/1/1), my symptoms again went away on Day 3, but returned (but not as severely) by Day 5.

Now, 4 days after my last dose, everything is milder. My feet and calves feel like I'm wearing socks when I'm not. There's very light tingling and they sometimes feel cold ,even though it's 90+ degrees here and rarely lower than 80 degrees in my house), but the burning pain has not returned. I can now put my rings on, so my finger joint swelling has gone down significantly. I've also noticed that I can squat down at work without having to use a hand to pull myself back up... my legs/knees can propell me back upright on their own.

I think I'm officially on the mend from whatever the hell was going on.

I'm still taking the gabapentin, so maybe that's the miracle that is making me feel better, or maybe it's some combination of anti inflammatory, magnesium, fish oil, vitamin d, and b-6 supplement doing the trick. I'll eventually start alleviating these things one by one to see if I can quit taking a meal full of pills every night.

My podiatrist has recommended PT, but I'll probably avoid the expense of that as I continue to improve. If I have a setback, I'll definitely be ringing them to set up an appointment.

For now, I'd really like to know if there's some test that can pinpoint the excessive inflammatory. I'll be due for the booster in a few months (recommendation is 8 months after 2nd dose unless immunocompromised). Unless this can be diagnosed and treated, I'll be waiting as long as possible to opt in. Working in a pharmacy, and being on the frontline for testing and vaccinating, I know I'll have to protect myself eventually. I just don't want to go though this again . If there's some way to prove that's what I've experienced, maybe it can be resolved quicker with future vaccines.

Flu shot season has also arrived. I'll be getting that as soon as I dispense the first flu medication this year.

Jump to this post

Hmm...interesting question. I'm by no means an expert in neuropathies, but it seems most people don't know the exact cause of theirs. Here is what Mayo Clinic has to say https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/symptoms-causes/syc-20352061
I don't know which is worse after vaccine - pain or neuropathy, but they are both telling us our immune system is capable of revving up!
Sue

REPLY
1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Aug 21, 2021
In reply to @mcd2021 "Hi Sue, wow, that's awful to get a reaction like this to every vaccine you receive...." + (show)
@mcd2021

Hi Sue, wow, that's awful to get a reaction like this to every vaccine you receive. I'm glad to hear that a two week course of prednisone calms it down for you. My doctor gave me a Medrol pack which was I think 6 days. It didn't help at all but I wonder if a regimen similar to yours might have helped more. I'll ask my doctor about it. That's wonderful that your daughter only experienced a mild reaction to her booster shot. Hopefully that third dose will give her plenty of protective antibodies. Many thanks again for your reply!

Jump to this post

@littlenoise and @mcd2021 My doc used 40 mg for 7 days, then 20 mg for 7 days of prednisone. This has been my pattern for years, except minor asthma flares, which are 20 mg for 7 days. According to both primary and pain doc, no "taper" is required for short courses of prednisone (less than a month).

I will take quite a bit of vaccine discomfort over Covid or flu - I have compromised lungs (asthma & bronchiectasis) and inflammatory arthritis - last bout of flu landed me with pneumonia, then a year of bronchitis followed by several other long infections, 18 months of antibiotic therapy which made me very ill, all of which morphed into chronic pain that took another year to get under control...
Sue

REPLY
1 reply
sdf2000 | @sdf2000 | Aug 22, 2021
In reply to @littlenoise "So, here I am again. I'm wondering how the excess inflammation issue is/was diagnosed. While my..." + (show)
@littlenoise

So, here I am again. I'm wondering how the excess inflammation issue is/was diagnosed.

While my main concern was my tingling/cold/burning feet, I also had swollen fingers and excessive arthritis in my knees (I've always had arthritis in my knees that comes and goes, but is usually controlled with Aleve and Fish Oil). Now I'm wondering if the more intense flares are linked to other vaccines I've had in the past 5 years (both pneumonia shots, shingles, flu, etc.), but not as intense as the Covid, which pushed me into the neuropathy. Seems plausible, but am wondering how the theory can be proved.

After my second course of prednisone (10 mg, 3/3/3/2/2/1/1), my symptoms again went away on Day 3, but returned (but not as severely) by Day 5.

Now, 4 days after my last dose, everything is milder. My feet and calves feel like I'm wearing socks when I'm not. There's very light tingling and they sometimes feel cold ,even though it's 90+ degrees here and rarely lower than 80 degrees in my house), but the burning pain has not returned. I can now put my rings on, so my finger joint swelling has gone down significantly. I've also noticed that I can squat down at work without having to use a hand to pull myself back up... my legs/knees can propell me back upright on their own.

I think I'm officially on the mend from whatever the hell was going on.

I'm still taking the gabapentin, so maybe that's the miracle that is making me feel better, or maybe it's some combination of anti inflammatory, magnesium, fish oil, vitamin d, and b-6 supplement doing the trick. I'll eventually start alleviating these things one by one to see if I can quit taking a meal full of pills every night.

My podiatrist has recommended PT, but I'll probably avoid the expense of that as I continue to improve. If I have a setback, I'll definitely be ringing them to set up an appointment.

For now, I'd really like to know if there's some test that can pinpoint the excessive inflammatory. I'll be due for the booster in a few months (recommendation is 8 months after 2nd dose unless immunocompromised). Unless this can be diagnosed and treated, I'll be waiting as long as possible to opt in. Working in a pharmacy, and being on the frontline for testing and vaccinating, I know I'll have to protect myself eventually. I just don't want to go though this again . If there's some way to prove that's what I've experienced, maybe it can be resolved quicker with future vaccines.

Flu shot season has also arrived. I'll be getting that as soon as I dispense the first flu medication this year.

Jump to this post

There's a C-Reactive Protein (CRP) test that you can get from Lab Corp or Quest. There are two versions, regular and High Sensitivity(HS). Regular is more for general inflammation whereas the latter is used more for cardiac inflammation assessment.

REPLY
2 replies
sdf2000 | @sdf2000 | Aug 22, 2021
In reply to @sueinmn "Hmm...interesting question. I'm by no means an expert in neuropathies, but it seems most people don't..." + (show)
@sueinmn

Hmm...interesting question. I'm by no means an expert in neuropathies, but it seems most people don't know the exact cause of theirs. Here is what Mayo Clinic has to say https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/symptoms-causes/syc-20352061
I don't know which is worse after vaccine - pain or neuropathy, but they are both telling us our immune system is capable of revving up!
Sue

Jump to this post

Diabetes/metabolic accounts for 2/3 of all peripheral neuropathies. The other 1/3 is made up of any number of causes. In some cases there is simply no known cause(idiopathic) but that is a definite minority of cases.

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