COVID vaccines and neuropathy

Thank you for the link. It seems to validate my small fiber neuropathy as a result of the Pfizer vaccine. Is anyone getting advice from their neurologists/physicians about getting a booster? My neurologists say don't get it because I'll have a worse reaction. But I don't want to die of COVID. What advice are others getting from their doctors? Please relay. Thank you.

Thank you. I experienced a flare up in my small fiber neuropathy after the 2nd shot. I clicked on the note in this first article, which led me to an abstract in another article, which described my experience to a T. Anyway, thank you.

I no longer go to a neurologist. We know my small fiber neuropathy is from celiac disease (at one point they suspected it was from my primary immune deficiency) and once I figured out my diet it flared down completely. I had not had a flare in months, maybe even a year or more, before getting the vaccine.
The small fiber neuropathy flared with the first shot but went away. It flared with the 2nd shot, and has diminished, but I am still experiencing a flare. Weirdly, I have pain in my small finger joints now - which had previously not been affected by my small fiber neuropathy. My normal areas of pain from small fiber neuropathy are all flared down now, but my small finger joints are still being affected.
We have moved and I no longer have a neurologist nor do I think I need one currently, or I would ask a neurologist. I did ask my immunologist (well his staff) and my PCP. I also talked with folks at The Immune Deficiency Foundation. They were all aware of neurological flares. They felt the risk, in my case, of not getting vaccinated outweighed the neuropathy - in my case. They said I could be put on Gabapentin or some other medication I have now forgotten the name of. I declined, hoping the neuropathy would flare back down again. It has. It has flared down almost entirely, but I worry about getting a booster. I really worry about getting frequent boosters. I am positive it will flare up my neuropathy. The question is how badly will it flare. It has been awful in the past. It was so bad that it felt like I was walking on glass, I could not feel part of my face, I got burning and stabbing pains. It felt like someone was sticking needles into my toes. Some places felt numb. Anyway, when all that flared down completely for all those months - well I felt like I had been given my life back. I had other problems from untreated celiac disease and those improved as well. Anyway, to risk my health now, because of a booster is a weighty decision. I am jealous of all the ground I gained back. Still, I know the risk of actually getting the virus. It is quite the dilemma I find myself in. My husband is so worried about my immune deficiency (I have something called common variable immune deficiency - although I am borderline at this point so not being treated, just monitored). He worries what the virus will do to me. I think my doctors are in that camp too. So, I will probably get one booster and then hope for the best. I am terrified, though to be frank. My best friend thinks I am a moron after getting the 2nd shot. But, it is my decision.
I hope this helped. I am afraid my situation may be too different from yours to be much help.

Hi Lisa--I am sorry for what you've been through. Yes, we seem to have different problems. But we both have the identical dilemma. Which vaccine did you get? I may get the J&J (even though it seems pointless since it is not as robust as the other mRNA ones) or Novavax when it becomes available. Novavax was suggested to me by a neurologist I wrote to. That's because it and J&J work differently from Pfizer and Moderna. On the good side, there seem to be medications to now help treat COVID if we do get it. We may not die. Honestly, I wish we had a neurologist on this site who could give definitive, medical advice. Volunteers, have you ever thought of getting some MAYO doctors to weigh in for us?

It’s good to have affirmation of the impacts of vaccines. I hope it spawns more research and awareness among doctors. I’m fortunate my neurologist acknowledged my reaction. I know many have not had the support of their providers. I hope you find improvement in your SFN.

It was the Moderna vaccine. I am sorry for what you are experiencing too.

It was gone entirely before the vaccinations. I should note that they flared my symptoms but not all my symptoms. If you don't mind a metaphor. If my symptoms were like a band, it is like the shots flared up the band - but some of the band members sat quietly. But the shots brought a couple of new members along - ones I had never heard play before. They played dully compared to the old band. Then, some of them stopped entirely. Only the new band members are still playing, and even one of them is quiet now.
I am sorry, I am a creative, and this is how my mind works.
Imagine the horror my doctors must view my descriptions of my symptoms with. Sometimes, I just get stared at. 🙂

Sorry to write you two replies but I wanted to add that all of my doctors believed me immediately about the flares - so that was good. As a person who struggled for years to get to a diagnosis, I am grateful for that. I can imagine many will not get the support of their providers.
I reported my symptoms to my immunologist, PCP, the CDC (I signed up for that after test survey), my pharmacist, and The Immune Deficiency Foundation. I felt it important to share my experience for that very reason - so many do get doubted.

My first two shots were Pfizer which increased my pain tremendously so I opted to get the J&J for my booster in October and I’ve been fine. I was so happy when they ok’d mixing vaccines.

I read this entire article. From their comments above, I believe many of the posters did not.
The article does a service by researching other papers which report various neurological adverse reactions to all available vaccines. By a huge margin, the most common reaction was headache, many of which are described as simply tension headaches. The next most common reactions were GBS and VST, lower than headache by a factor of ten. The other reactions listed ranged from a handful to 1 or 2. A large cohort of those reporting adverse reactions were in nursing facilities and/or suffering from serious pre-existing conditions. Of note, since this is a forum about peripheral neuropathy, there were no reported cases of PN, so technically, this article does not apply to us.
The authors note that their paper may not include all neurological adverse reactions, This is likely because those unreported reactions were not serious ones.
The article does not prove or disprove that a vaccinated individual may develop PN, or whether vaccination can make a pre-existing case of PN worse, as some posters above have reported.
I too am a sufferer of PN. I have all 3 shots, with only a slightly sore arm to report. I understand the terrible frustration of not having an answer to the cause of the disease, nor an adequate treatment.
Unfortunately, the article being discussed does not provide us with this information.
Furthermore, from the zeal expressed by some posters when discovering this article ("at last", etc.) I sense that some of the posters take it as some form of enlightenment or knowledge which has been previously unavailable or hidden, perhaps as a conspiracy. This is simply not true.
All medications, including vaccines, have side effects, sometimes fatal ones. The covid vaccines are remarkably safe, although they too have side effects. In deciding whether or not to take them, we as patients should do a cost/benefit analysis. Do the benefits of taking the vaccine outweigh the costs? Since Covid can be a horrible disease, causing millions of deaths and serious longterm effects in those that survive, this is as close to a no-brainer as it gets. Moreover, the decision to not get the vaccine can imperil the health of contacts (like your child or grandma), and impede the development of herd immunity, which can negatively affect me and all the rest of us.
I am astounded and ashamed that so many in our country refuse to accept this. They look for needles ( pun intended) in haystacks to find reasons not to take a lifesaving medicine. Medical decisions should not be based on politics, unscientific rumors, or what one hears on talk radio, or well meaning forums such as this one.