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?

Interested in more discussions like this? Go to the Neuropathy Support Group.

@lk61

@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.

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Thank you for the information. I’m sorry your side effects have persisted for so long. Hopefully, they’ll subside soon, for both of us!

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@mawmaw3

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!

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I am still dealing with my post-vaccine neuropathy from the end of June. The intense muscle pains and nerve pain in both hips to toes has lessened drastically since I started a 20-40-day steroid regimen. I'm on day 9. I still have the neuropathy in my head with a very tender scalp that feels like it's bruised in some places and numb in other places. I have to follow up with neurology still, as my nerve conduction tests, etc. came back "normal," which just means there's no nerve DAMAGE, but I'm obviously still reacting to something, mostly inflammation. My inflammation numbers were very high in my urinalysis, which they usually aren't, even though I have an autoimmune disease of my joints. So we believe that disease is just in a severe flare after an over-reaction to the vaccine. I hope you get relief soon. It's really terrible. I was the same way from end of June until last week ... moaning and in pain constantly, with every little thing I did. I felt completely disabled and very angry and frustrated. Maybe steroids could help for you, too? It's been like a magic bullet. Still have some healing to do, but I'm able to go for walks and get some exercise again. I wish you the best of luck!

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Thank you for your reply! I was hoping not to have to go the steroid route, as they present their own side effects. But, you’ve gotten such relief, I think we should consider it. I’ll be contacting my dr. Thank you for your well wishes and I hope you continue to improve.

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@lk61

@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.

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Wow... Our stories are so very similar. I would love to know more about your story.

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@lindasue716

Wow... Our stories are so very similar. I would love to know more about your story.

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Your story is very similar and helpful! I haven’t had testing done, as my doctor is convinced it’s shot related inflammation. However, with the worsening symptoms, I’m thinking we may end up testing. I have a lot of fluid retention and lethargy with Gabapentin, which aggravates my heart condition, so am trying to stay off it. We’ll see where we go from here. Hope you continue to improve!

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@colleenyoung

Hi SDF, I'll be interested in hearing what you learn in your upcoming appointment at the neuropathy clinic.

In the meantime, I think you might be interested in participating in this group on Mayo Clinic Connect
- LCHF Living & Intermittent Fasting https://connect.mayoclinic.org/group/lchf-living-intermittent-fasting/

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Update: There has been no resolution of symptoms after 2 months. Actually, the intermittent paresthesia in the arms/hands has progressed to symptoms consistent with CTS. The immune response from the vaccine definitely inflicted damage to the median and peroneal nerves. There is no doubt about it. It feels like the median nerve damage could possibly resolve over time, but I am almost certain the progressed peroneal nerve damage will not. Not on its own. The former is intermittent, the latter is constant.

Extensive lab work returned mixed results. No vitamin deficiencies or toxicities. Standard inflammation markers(CRP, CRP-HS, ESR) are in the optimal range. A1c well below the pre-diabetes threshold. homocysteine levels, however, are elevated. Elevated homocysteine is typically associated with vitamin B deficiencies--but i have none of that--but the literature also suggests it is a reliable marker for PN.

Treatment at this point consists of physician supervised lab work, a scheduled neurological exam in November and medical laser treatment. The medical cold laser therapy might be of some significant therapeutic benefit if you do it done every day for 6 months to a year. So, just shell out about 10K for a used medical laser on eBay and do it yourself. That would be more cost effective than having it done at the doc's office(1K/month, 3 days/wk). Any further aggressive alternate treatments will depend on the neuro exam diagnosis.

Interestingly enough, I was already pretty fit before this happened. But I have since gone on TRT. So apart from problems feeling my feet and the median nerve irritation, I feel pretty good. The damage is sensory, not motor. There is no real impediment to exercise. However, there will be no more shots for me. Ever. Again. For any vaccine. I had all the childhood inoculations, but this is the first vaccine as an adult. And this happens.

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I began having numbness and tingling after Covid vaccine. After seeing neurologist I was told he had seen this with other patients. Labs ordered revealed I had MGUS which can also cause peripheral neuropathy. I am still having some symptoms 6 wks post vaccine. Have you learned any more about this since your original question?

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I began having numbness and tingling after a Covid vaccine? Has anyone experienced the same symptoms and how long did this last?

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I had my Covid shot Moderna in Jan & Feb. I got Covid arm a week after the first shot. My left thigh also had a very sensitive, tingling sensation. I had shingles there years ago and it was the same feeling. Then my upper left back had the same feeling. I felt sure it was shingles and maybe the shot activated the virus in me. I did take Valtrex, never broke out with the blisters but the strange feeling has not gone away.........and it has been months. I have been to a doctor, He said it had something to do my spine and sent me to physical threrapy. Everything they did made it worse.....including dry needling into the muscle. Weeks after the dry needling I took a hot shower due to the pain and broke out with a red rash everywhere the needles went in. Similar to shingles but not as painful. I am 76, female and in excellent health. I do think the vaccine caused all this but no one in believes me. I don't know what the shot did, but I think it has something to do with the nerves. I will NOT the booster. Anyone else have this problem.

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@sdf2000

Update: There has been no resolution of symptoms after 2 months. Actually, the intermittent paresthesia in the arms/hands has progressed to symptoms consistent with CTS. The immune response from the vaccine definitely inflicted damage to the median and peroneal nerves. There is no doubt about it. It feels like the median nerve damage could possibly resolve over time, but I am almost certain the progressed peroneal nerve damage will not. Not on its own. The former is intermittent, the latter is constant.

Extensive lab work returned mixed results. No vitamin deficiencies or toxicities. Standard inflammation markers(CRP, CRP-HS, ESR) are in the optimal range. A1c well below the pre-diabetes threshold. homocysteine levels, however, are elevated. Elevated homocysteine is typically associated with vitamin B deficiencies--but i have none of that--but the literature also suggests it is a reliable marker for PN.

Treatment at this point consists of physician supervised lab work, a scheduled neurological exam in November and medical laser treatment. The medical cold laser therapy might be of some significant therapeutic benefit if you do it done every day for 6 months to a year. So, just shell out about 10K for a used medical laser on eBay and do it yourself. That would be more cost effective than having it done at the doc's office(1K/month, 3 days/wk). Any further aggressive alternate treatments will depend on the neuro exam diagnosis.

Interestingly enough, I was already pretty fit before this happened. But I have since gone on TRT. So apart from problems feeling my feet and the median nerve irritation, I feel pretty good. The damage is sensory, not motor. There is no real impediment to exercise. However, there will be no more shots for me. Ever. Again. For any vaccine. I had all the childhood inoculations, but this is the first vaccine as an adult. And this happens.

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@sdf2000 the similarities in our conditions are amazing, except that I have hardly any arm/hand involvement any more. I am coming around to the same way of thinking about vaccines as well, which constitutes a huge change for me. Have been a very big proponent of this vaccine, but I feel no more will be in order for me.

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