COVID vaccines and neuropathy

@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/

Thank you for the guidance John. I will look into it.:)

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.

I thought you could only have sciatica in the back of the leg but I looked it up and it can be in the front. I hope you find out what it is and get it taken care of.

@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.

I am so sorry you are going through all of that! I too had terrible weakness in legs (couldn’t walk unassisted the whole month of July) but that has improved (not fully but improved). I also have internal twitching in both lower legs at rest, and I do have pain that travels (only legs). I have had normal EMG and bloodwork. The neurologist said inflammation from vaccine causing this and will go away over time. However, he has no answers for the rashes from the sun on my legs (even with clothes on) vestibular & autonomic issues (dizziness, brain fog) which also are improving though nowhere near where I would like to be 5 months out. I also turned down Gabapentin and am doing everything naturally (for now). I see a Chiropractic Neurologist for red laser therapy py and brain re training and a Naturopath for acupuncture and nutrition. I cut out sugar, gluten & dairy and am on some supplements. Some of the supplements are directed toward the issue, some are to maintain my immune system b/c I am not getting the second vaccine. I didn’t have any issues prior to this with the exception that I had a positive autoimmune titer in 2020 that was negative 6 months later. My CN feels we should treat this as autoimmune due to the positive result and the likelihood the vaccine triggered it. I hope you see continued improvement. I appreciate your reaching out and your story IS helpful. I am in another support group but find the focused support here helpful also. Based on your feedback I am going to try to start being active again. I have held off. I pray we all get better and stay safe. Best wishes to you too!!

Thank you so much for your response. I am so sorry you are having this experience but it does seem like with your underlying issues foraging ahead with the second vaccine was necessary.

I knew nothing about neuropathy before this either! I am in another support group as well but I am thankful for this focused space and have found a lot of helpful information. I finally posted the other day because I had a backslide and was discouraged that no one seems to be getting better so I thought I would ask.

I am not seeing a rheumatologist at this time. I had a positive autoimmune titer in my bloodwork in 2020, that was negative 6 months later because of this 3 rheumatologists denied me early on (my PCP referred me right away after issues started with the vaccine). My neurologist has basically sent me on my way saying, “give it time.” Even after being admitted to the hospital. He did refer me to the NeuroCovid clinic at Yale and I have an appointment in March, 2022, but I am praying I am improved my then.

I am basically managing all of my symptoms with a Naturopath and a Chiropractic/Functional Neurologist, who feels this should be treated as autoimmune. I have considered seeing an allergist/immunologist as I have some new symptoms which seem to be histamine related.

I hope you see continued healing and find a rheumatologist that provides you with a healthful way forward. Best wishes to you also!!

Ugh. March 2022?! That’s ridiculous. I just fail to understand the medical world when it has to deal with actually addressing something out of the usual heart disease, cancer, etc. I do understand that autoimmune diseases can be hard to diagnose and treat, but when the providers don’t even try it’s disheartening.

Did you ask your neurologist just how much time you’re supposed to suffer?! There are certainly many people on this discussion whose symptoms have not gone away.

I’m glad you’re seeing a naturopath. Have they discussed your histamine reactions with you? I too have strong histamine reactions, I saw an acupuncturist for several years who was beneficial in treating it. Although it’s gotten worse again since I’ve contracted Sjogren’s. I think that adopting the diet you also observe and also walking has helped my symptoms some, much of the research out there on PN and autoimmune diseases points to the benefits of these two factors, as do many on Connect.

I too get rashes in the sun…for me this is a Sjogren’s thing. Sjogren’s, as with some other autoimmune diseases, is difficult to diagnose by just blood labs and can be a systemwide disease with many different manifestations. I hope you continue to make progress, but if not convince a rheumatologist to see you.

Stay positive on your journey to health.

I’ve had peripheral neuropathy in both feet, due to diabetes and spinal stenosis, for several years. With multiple health issues and a history of severe allergic reactions to medications and vaccines, I was very hesitant to be vaccinated. My dr advised me to get the vaccines as any reactions could be treated and are not dangerous, according to him. I received my first Pfizer Covid-19 vaccine on Aug 2. Twelve hours later my PN was worse with sharp stabbing pains in both feet, legs, arms and hands and a headache developed. Staying in touch with my primary care dr and my symptoms improved slightly. My dr advised me to go ahead and get the 2nd dose as scheduled on Aug 23, because my symptoms would go away, but the risk of the virus remains. So, about 6 hours after the 2nd dose, my symptoms worsened and have continued to worsen since. I’ve added B12 to my regimen. Since I’m on Cymbalta for pain management, and several other meds for other medical conditions, I’d rather not add additional prescription medications. Now, we don’t know how long these symptoms will persist, but there are days I can barely walk due to pain and numbness. When I’ve tried increasing my activity, a few hours later, all my joints and muscles hurt. To the point that I moaned with every movement. That subsided after about 6 hours. I’ve been seeing a chiropractor for 6 months for my spinal stenosis. She had me down to seeing her every other week and I was doing quite well. Currently, I’m seeing her twice weekly and getting detox foot treatments, massage, muscle stimulation and adjustments. I do feel better for a day or so following treatments, but am quite discouraged!!!! This has severely changed my quality of life and I hope it improves soon. Has anyone experienced similar symptoms post vaccine? Also, how long did symptoms persist? Thank you!

@mawmaw3 i am 8 months post vaccine with both Pfizers which gave me new onset neuropathy. Interestingly I do also have degenerative joint disease and spinal stenosis in neck and low back. However I never had the leg and feet issues until vaccine. My symptoms aren’t as severe as what you describe, but of long duration unfortunately.