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?

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@mawmaw3

I am having a horrible time with an increase in neuropathy symptoms since having Pfizer vaccines. Symptoms were only in my feet and well controlled with duloxetine. Sharp stabbing pains, pins and needles, numbness in both feet, legs, arms, hands, face and trunk. Was walking fine. Now must use a walker to prevent falls. It’s been 5 months and symptoms are worsening!

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I have a similar experience. My symptoms started within 2 weeks of the first Pfizer vaccine. I rapidly developed sensorimotor peripheral neuropathy. I have gone from being an active professional to partially disabled on medical leave. My symptoms did not begin to improve until 7 months after the 2nd vaccination. Unfortunately, the federal compensation program for vaccine injuries does not apply to the COVID vaccines

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@emily75

I was afraid of getting the Pfizer because I have neuropathy due to chemo. I then got the J and J. I had a variety of side effects. Have any of you had an increase in neuropathy symptoms from the Moderna vaccine?

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The first Moderna shots were fine but the booster seems to have worsened the neuropathy esp balance. Arm hurt for a few days too after the booster but not at all after the initial injections.

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@ninette

I live in Belgium, but did report it online at VAERS and also locally here. The more people do this, the more likely it is that they might tweak the vaccines a bit. Apparently the glycol (the liquid that carries the 'messengers' for the immune system) is to blame in upsetting the immune system of some people. Or probably of quite a lot of people, as many experience this after Pfizer or Moderna.

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Really? Did a doctor tell you it is likely the glycol causing the reaction? That’s interesting and hadn’t heard that. My neurologist said the antibody boost probably caused a flare in my autoimmune disease causing my neuropathy and thus increased my symptoms.

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@emily75

I was afraid of getting the Pfizer because I have neuropathy due to chemo. I then got the J and J. I had a variety of side effects. Have any of you had an increase in neuropathy symptoms from the Moderna vaccine?

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Sorry, I can’t relate to Moderna because I had Pfizer. Because of the on going neuropathy it caused me I haven’t gotten fully vaccinated. Would you mind elaborating on the side effects you had from J&J? Did it increase your neuropathy as well? Trying to figure out the best course of action to take myself. Wishing you the best.

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@athenalee

Really? Did a doctor tell you it is likely the glycol causing the reaction? That’s interesting and hadn’t heard that. My neurologist said the antibody boost probably caused a flare in my autoimmune disease causing my neuropathy and thus increased my symptoms.

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I found some research papers on NMBI that stated that the fatty glycol could be to blame and my doctor seconded that. But what your neurologist says also makes sense. I think that our immune system gets 'overloaded'. Hopefully more research is underway, we'll get clearer answers -and an improved vaccine!

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@athenalee

Really? Did a doctor tell you it is likely the glycol causing the reaction? That’s interesting and hadn’t heard that. My neurologist said the antibody boost probably caused a flare in my autoimmune disease causing my neuropathy and thus increased my symptoms.

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I found another interesting research paper on NCBI (not NMBI) about neuropathic flares after the vaccine: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8146571/

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I'm also concerned about the J&J vaccine. It contains polysorbate 80, which is structurally related to the polyethylene glycol (PEG) in the mRNA vaccines. People who are sensitive to PEG may also be sensitive to polysorbate 80.

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@ninette

I found some research papers on NMBI that stated that the fatty glycol could be to blame and my doctor seconded that. But what your neurologist says also makes sense. I think that our immune system gets 'overloaded'. Hopefully more research is underway, we'll get clearer answers -and an improved vaccine!

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Agreed. I’m immunosuppressed due to a liver transplant, have three autoimmune diseases, and feel completely vulnerable as studies indicate I most likely have no Covid antibodies. So, would definitely like to get a third shot. But, I won’t risk another increase in PN.

Thank you for posting the articles. There’s a Connect discussion starting on the new AstraZeneca antibodies treatment, so I’m hoping it may offer options - https://connect.mayoclinic.org/discussion/evusheld/

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Hello

I'm truly terrified to get even the first shot. I have suffered from SFN for decades. For the last 9 yrs or so I attempted to get medical help, but around 10 doctors and specialists told me I was fine, only had anxiety, or my favorite, my problems were psychological. Finally, I found a doctor who wasn't concerned in being the smartest person in the room and actualky listened. After doing my own research, I concluded that all my symptoms could be affected by the nervous systems; and they include severe anxiety and depression, tachycardia (hence circulation issues- and I'm diabetic), severe pain in hands and feet, joint/tendon pain, random piercing pain, polyneuropathy, and problems with my autonomic functions, incluing terrible digestive issues, sweating hands and feet, along with other minor symptoms like occasional random shocks. At this point, my life had been hell for what seemed like forever and I was desperate to learn why, so I asked my pcp to send me to a neurologist. I later learned from ppw that he too thought my problems were merely caused by anxiety, because on the outside I look to be in great shape; I exercise as often as my body will handle and have a great diet. I told him I felt my problems could all be attributed to my nervous system and although he told me thst surely wasn't the case, he agreed to refer me. Sadly, my neurologist thought I just had anxiety and possibly polyneuropathy. After months more of research on circulation issues and the nervous system, I concluded I had SFN and asked my pcp to refer me to Sweedish for a biopsy. I cried after my 1st visit to Sweedish after the neurologist belittled my prognosis and told me I didn't have it. Since I had the authorization, I asked to go thru with the biopsy and it came back positive for SFN. The doctor let me know, but it came with no prescriptions for pain or even advice or a follow up visit. Furthermore, my local doctors were also of no use, as it is almost impossible to get pain meds in WA state. My pcp hasn't even read my SFN research I sent her 2 yrs ago and acts like I just deal with anxiety. So sorry if I'm forced to scoff at the commercials that tell me to go to my doctor for vaccine advice; I'm in this alone. My days range from thinking I'm going to die to vacillating between miserable and I think I can make it. So when a friend asked what was worse; having my symtoms flare up or getting covid and possibly dying, I really couldn't answer. I can't even take cold medicind and some nausea medication sent me to urgent care. Furthermore, I'm worried about long term effects, because there has already been at least one biopsy proven case if SFN attributed to the vaccine. Hence, it can be toxic to the nervous system and anything that is, makes me ill; I can't even paint for long outside, smell campfire smoke, or even the exhaust of a car driving by. Well, at least the vaccines are "safe", thanks to the 15 minutes if trials (I jest). Any advice or experiences with the vaccine that anyone wants to share. And, one if the vaccines might not even help with the new variant...

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