COVID vaccines and neuropathy

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

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.

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.

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?

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.

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!

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.

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