Anyone had a problem with neuropathy after receiving the vaccine?

I think a lot of doctors just don’t know or want to know if there is a correlation, because in reality there are a relatively small percentage of us having these non-life threatening reactions. And, we definitely need people vaccinated. But, it doesn’t make it right that there are providers who do not take the symptoms seriously. My hope is that research can lead to a Covid vaccine that doesn’t cause such reactions. As a transplant recipient, there is little chance that I and many others are protected even though we’re fully vaccinated.

I have autoimmune disease caused neuropathy, which increased significantly after I was vaccinated. I saw my neurologist shortly after my second shot and he said he wasn’t surprised at my body’s reaction since the vaccine is designed to spark an immune response. So, at least in my case, it triggered Sjogren’s to go even more in hyperdrive and increased my neuropathy symptoms.

I was fortunate that my PCP and rheumatologist both took me seriously. And I'm not the only patient they've seen with similar reactions. But they seem to be the exception to the rule. You are 100% correct that we are among a small percentage of people who had a serious but non-life threatening reaction. But that doesn't give providers the right to not take people seriously and dismiss the possibility that the vaccine could be responsible for their issues. My daughter has had tachycardia for 4 months after one shot of Pfizer. Her PCP told her it was anxiety and to see a psychiatrist! It was so bad she ended up seeing a cardiologist who confirmed the tachycardia and prescribed medication to slow her heart down. But even he refused to admit the possibility that the vaccine was responsible, even though post-vaccination heart issues have been widely reported It just astounds me.

How is your neuropathy now? Has it lessened at all? Hope you have found something that helps you.

I’ve seen so many people on another group who first developed neuropathy from the Shingrix vaccine and then again from covid vaccine. I did as well but it was much milder then the effects from Pfizer. Mine had cleared up, I had zero symptoms before my 1st dose Pfizer. It would be very Interesting to know how many others had the same experience and if that was a factor in how bad of a reaction you get from Pfizer. Thanks for doing the survey.

It is at least affirming to have recognition of the negative effect the vaccine has had on many. I’ve always advocated for being vaccinated, but although a booster is highly recommended for us transplant folks I will definitely not be getting one.

My neuropathy spiked to new highs after both vaccine shots. It’s fairly stable now, but I definitely have good and bad days since the underlying cause is Sjogren’s. I think sticking to walking a couple miles each day, no sugar, white flour, and low carb is helping.

I’m glad your daughter is doing better. How are you?

I took the first shot of Moderna on 7/27/21 and am scheduled to take my second dose tomorrow. I am filled with anxiety about getting it. When I was given the first shot, my arm immediately started to bleed and the tech slapped a bandaid on it. The bandaid had a small window in it and it immediately filled up with blood. I've never heard of anyone else bleeding except from the gal who gave me the shot. My arm was pretty sore for a few days and I sported a bruise by the injection site for about two weeks.

Over the last year, I've complained of my little toes feeling numb at times, but don't know what is causing it. I think I complained once to my nurse practitioner or doc and they thought it wasn't a big deal. I hate going to the doctor and rarely go. My only regular medication is wearing a very low dose estrogen patch and I've worn that for more than 20 years to control headaches, and level out anxiety. My little toes on each foot are kind of numb right now and often are feeling that weird way at night. Not painful, just kind of numb feeling.

The only new thing I guess I've noticed since the first shot is occasionally feeling like my lower calf is tight or swollen, but nothing is visibly wrong. I've also had some occasional heartburn. I believe in immunizations, but I've read about so many people having pain after the 2nd shot, particularly with neuropathy, like Eric Clapton, the guitarist guy! I am a musician and I can't imagine losing my fingers ability to play the keyboard, or to have pain in my hands like that, or pain anywhere like that, really.

I don't want COVID, but right now I'm thinking I'd rather take my chances on getting over Covid than living with some kind of pain for months or forever because of taking some shot. I am a supposedly pretty healthy 67 year old woman, and take total control of myself, but I do live alone and have no one to care for me if I get down. This insanity of the unknown side effects of the vaccine is about to drive me nuts. I think I'll call my doctor and have him run blood tests on me to see if any of my labs have changed since I took the first shot.

Hello @klmn, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. The unknown can be pretty scary at times. Are you able to discuss your concerns with your doctor before you get the second vaccine?

I'm so glad to hear your neuropathy is fairly stable at this point. My symptoms have been going on for 4 months. A couple of things have improved but the rest is still ongoing, I've made similar diet modifications like yours, taking vitamin supplements and fish oil. I like to walk too and I try to do it most evenings. I want to add more exercise but I always seem to find something else to do instead, lol.

I'm pro-vaccine too and wish I had been able to get the second shot. And after what you went through I totally understand your decision not to get the booster.

Unfortunately I don’t ever expect to feel well again, but I do think that diet, walking, supplements is certainly helping. The pain is usually tolerable with a low dose of Gabapentin, as long as I can sleep it’s manageable. I’m seeing a neuromuscular MD next month, so I’m hoping she may offer some insights.

Hopefully your neuropathy will improve. Stay strong, eating well, and walking!

Unfortunately I don’t ever expect to feel well again, but I do think that diet, walking, supplements is certainly helping. The pain is usually tolerable with a low dose of Gabapentin, as long as I can sleep it’s manageable. I’m seeing a neuromuscular MD next month, so I’m hoping she may offer some insights.

Hopefully your neuropathy will improve. Stay strong, eating well, and walking!