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COVID vaccines and neuropathy

Neuropathy | Last Active: Nov 14, 2023 | Replies (2164)

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@amybeau

Hello. I received my first Pfizer vaccine on April 25 and since then have had a really rough go of it. July & August were my worst months (in and out of the hospital). I have been diagnosed with vestibular and autonomic disorders, neuropathy & MCATS. What I most want to know from this group is anyone’s vaccine induced neuropathy getting better? Has anyones neuropathy issues resolved? And if not, how are you best managing them? Also, does anyone here have autoimmune based neuropathy? Thank you.:)

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Replies to "Hello. I received my first Pfizer vaccine on April 25 and since then have had a..."

@amybeau, There is another discussion that you might find helpful where members are discussing autoimmune and neuropathy -- Autoimmune illness and small fiber neuropathy: https://connect.mayoclinic.org/discussion/autoimmune-illness-and-small-fiber-neuropathy/

Hello @amybeau
I began having peripheral neuropathy symptoms late last fall. I had the first Pfizer vaccine in February, my symptoms increased significantly. They reduced some, so I had the second (I’m immunocompromised due to meds for a liver transplant I had a year ago, so it’s important I’m protected). After the second vaccine, in early March, the symptoms worsened again, even more so, and for the most part continue to worsen.

I saw a neurologist later in March who thought my neuropathy was caused by Sjogren’s Syndrome, as I have two other autoimmune diseases that can be ancillary to Sjogren’s. Labs confirmed this. He also said he wasn’t surprised at my increase in neuropathy as the vaccines are designed to boost an immune response.

I began taking R-ALA/S-ALA, ALCAR, Complete Omegas with GLA, and I take 300 mgs Gabapentin. I’m hoping these will eventually. I’m looking for a competent rheumatologist who knows something about systemic Sjogren’s and I see a neuromuscular MD in two weeks.

Are you seeing a doctor for your autoimmune diseases? @johnbishop pointed you to a good discussion. I’ve found the other PN discussions very informative as well. I knew nothing about neuropathy before joining Connect. Best wishes in your search for a treatment.

@amybeau, hello. I got my Pfizers in Dec/Jan. I quickly (within a week) began having burning sensations in my hands and feet (which to a lesser extent might also pop up just about anywhere on my body), weak feeling in right lower leg, and a little later (about 2 weeks) mild intermittent twitching in right leg and foot. I also get other strange sensations in my legs and feet, hard to explain. And I have the feeling that my whole body is pulsating at times. But very little actual pain thankfully. I underwent just about every neuro diagnostic there is, except for LP. The final consensus is that the inflammation from already existing spinal problems and nerve impingement in my lower back were intensified by the vaccine. I knew I had lower back and neck issues because I have degenerative joint disease. However to go from only experiencing localized pain to these other symptoms in my leg and throughout the rest of my body was shocking, to say the least. It has been a very dark time for me and one in which I have at times been convinced that I have some ominous motor neuron disease. Here I am nearly 9 months later, and just in the last couple of months I feel I’ve seen a big improvement in the leg weakness and twitching. The burning and other sensations are still with me for the most part. What I’ve done: tried to become more active. Al my life I’ve been pretty fit and active until about the last 2 years. I have been getting cardio workouts that don’t hurt my back and resumed yoga at least once a week. I don’t eat a special diet just try to basically eat healthy, although at different times throughout this ordeal I have tried cutting out sugar, carbs, gluten and alcohol and nothing had any effect. I take meloxicam (NSAID for my back), multi vitamins, turmeric, magnesium and ALA daily. A few times per week I’ll also take extra B complex and D vitamins. About every other night I take appr .25 mg clonazepam to help sleep & muscle relaxation. I have on 2 different occasions tried to take Cymbalta and I simply cannot tolerate it. I wish I could because it had a really good effect on my back pain! However I am apparently what’s classified as a poor metabolizer and I have lots of trouble with certain meds. My neuro has mentioned gabapentin a few times but I’m just not going there. So overall, I guess I am improved in some respects and unchanged in others. Thankfully I no longer feel I have something that is going to kill or cripple me. I wish this hadn’t happened but if it doesn’t get any worse I can certainly live with it. Hope my story was helpful and best wishes to you.