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.

@mawagner13

You’re right. Flouroquinolones (FQ) are dangerous. They serve a purpose but only as a last resort when nothing else has worked and the risk to the patient outweighs the risk of the side effects. Unfortunately many doctors don’t know the full extent of FQ risks or the FDAs updated prescribing guidelines. Simple UTIs or in my case, an ear piercing infection, should not warrant FQ use. It’s like using a sledgehammer to kill an ant.
The damage they can cause can be extensive and irreversible. The multiple black box warnings are real. Most pharmacies don’t call these warnings to our attention beyond the insert which as you said we’re taught to ignore.
Tendons don’t snap because they’re tight. FQs actually cause them to deteriorate. They also cause aortic aneurysms and retinal tears for the same reason. The damage they can do is devastating . As a result, there is now an official diagnosis called FQAD, or Flouroquinolone Associated Disability.
I’ve had FQ induced neuropathy among other issues for 2.5 years. There is no fix. There are things that might help symptoms over time but that’s it. You’re 100% correct in that the symptoms might not present until weeks or even months after you finish the drug. For me it was 2 weeks. By that time the damage was done. Most people are unaware what FQs can do so they never make the connection between the script and the symptoms. Sadly, Physicians don’t either. They miss or dismiss the connection and just call your condition idiopathic and prescribe more medication. One doctor knowledgeable in FQ toxicity said to me, “If you take a drug proven to cause a, b and c and then you develop a, b and c there’s no mystery.”

There’s plenty of factual information about FQs out there. I implore everyone to read about the risks and trust that they are very real.

Jump to this post

...and its unfortunate that patients have to delve into this... DOCTORS SHOULD KNOW whether the patient's illness warrants these drugs.... also Pharmacist ... should raise a flag when they see it prescribed especially when, as I was, a long time customer and it wasn't as if I was in the hospital etc.... we dont all have computers to check out what we have been given, we are told to read the pamphlet in with the meds... why oh why didnt I phone either the dr or pharmacist before taking? I was typical... dont make waves the doctor knows best! Now I live with his "best" as do many others! Yes I am angry.

REPLY

If your symptoms began after the Covid vaccine- check out YouTube video "Spike Proteins in Immune Cells- Dr. Bruce Patterson discusses."

REPLY

I developed small fiber neuropathy from the Pfizer vaccine (I believe and two of my doctors, including my neurologist, think it is likely); the temporal proximity to the shot (and no other predisposing conditions or known causes my neurologist tested me for) makes this highly likely. Two weeks after the second dose, I had sudden acute onset of burning in my ankles, which rapidly progressed to my arms, hands and face. Looking back, I recall having some minor side effects after the first dose (like occasional fatigue walking and difficulty standing, both symptoms of small fiber neuropathy). However, because they were mild, I did not attribute them to the vaccine so I proceeded with the second dose three weeks later.
Dr. Waheed, a neurologist at the Univ of Vermont medical school, published a letter to the editor of Muscle Nerve in April 2021 where he describes a clinical case of small fiber neuropathy most likely attributable to the vaccine. And my neurologist tells me that there is some "chatter" among neurologists who are seeing more patients with neuro side effects likely attributable to the vaccine. I self-reported to the VAERs system and recommend everyone do so. (The VAERs folks have reached out to my doctor/the ER room - I thought I had Guillen Barre at first and went there - and requested medical records, so they're on this). It's important to get this data into the system -- not to discredit the vaccine but to make it safer in the long run. It may take time to understand all the side effects.
It is three months since my small fiber neuropathy first emerged. It's no better but I continue to hope this will run its course, as some toxic neuropathies do. I found a cream that works very well for the burning in my feet and arms, and I am on Gabapentin with some relief of some symptoms. I can swim but otherwise can hardly walk or stand. It's hard to accept this because I was a very healthy and active person before this. Overall, however, it's clear that this vaccine is a lifesaver for the vast, vast majority of people. I hope all of you here who have experienced worsened symptoms after the vaccine will improve and overcome this.

REPLY
@ebrinks

I developed small fiber neuropathy from the Pfizer vaccine (I believe and two of my doctors, including my neurologist, think it is likely); the temporal proximity to the shot (and no other predisposing conditions or known causes my neurologist tested me for) makes this highly likely. Two weeks after the second dose, I had sudden acute onset of burning in my ankles, which rapidly progressed to my arms, hands and face. Looking back, I recall having some minor side effects after the first dose (like occasional fatigue walking and difficulty standing, both symptoms of small fiber neuropathy). However, because they were mild, I did not attribute them to the vaccine so I proceeded with the second dose three weeks later.
Dr. Waheed, a neurologist at the Univ of Vermont medical school, published a letter to the editor of Muscle Nerve in April 2021 where he describes a clinical case of small fiber neuropathy most likely attributable to the vaccine. And my neurologist tells me that there is some "chatter" among neurologists who are seeing more patients with neuro side effects likely attributable to the vaccine. I self-reported to the VAERs system and recommend everyone do so. (The VAERs folks have reached out to my doctor/the ER room - I thought I had Guillen Barre at first and went there - and requested medical records, so they're on this). It's important to get this data into the system -- not to discredit the vaccine but to make it safer in the long run. It may take time to understand all the side effects.
It is three months since my small fiber neuropathy first emerged. It's no better but I continue to hope this will run its course, as some toxic neuropathies do. I found a cream that works very well for the burning in my feet and arms, and I am on Gabapentin with some relief of some symptoms. I can swim but otherwise can hardly walk or stand. It's hard to accept this because I was a very healthy and active person before this. Overall, however, it's clear that this vaccine is a lifesaver for the vast, vast majority of people. I hope all of you here who have experienced worsened symptoms after the vaccine will improve and overcome this.

Jump to this post

Can you please tell me what cream you are using to relieve the burning sensation?

REPLY
@bowerstx

If your symptoms began after the Covid vaccine- check out YouTube video "Spike Proteins in Immune Cells- Dr. Bruce Patterson discusses."

Jump to this post

I watched this and it was WAY to technical for me. Do you have a way to synops this in layman's terms?

REPLY
@ebrinks

I developed small fiber neuropathy from the Pfizer vaccine (I believe and two of my doctors, including my neurologist, think it is likely); the temporal proximity to the shot (and no other predisposing conditions or known causes my neurologist tested me for) makes this highly likely. Two weeks after the second dose, I had sudden acute onset of burning in my ankles, which rapidly progressed to my arms, hands and face. Looking back, I recall having some minor side effects after the first dose (like occasional fatigue walking and difficulty standing, both symptoms of small fiber neuropathy). However, because they were mild, I did not attribute them to the vaccine so I proceeded with the second dose three weeks later.
Dr. Waheed, a neurologist at the Univ of Vermont medical school, published a letter to the editor of Muscle Nerve in April 2021 where he describes a clinical case of small fiber neuropathy most likely attributable to the vaccine. And my neurologist tells me that there is some "chatter" among neurologists who are seeing more patients with neuro side effects likely attributable to the vaccine. I self-reported to the VAERs system and recommend everyone do so. (The VAERs folks have reached out to my doctor/the ER room - I thought I had Guillen Barre at first and went there - and requested medical records, so they're on this). It's important to get this data into the system -- not to discredit the vaccine but to make it safer in the long run. It may take time to understand all the side effects.
It is three months since my small fiber neuropathy first emerged. It's no better but I continue to hope this will run its course, as some toxic neuropathies do. I found a cream that works very well for the burning in my feet and arms, and I am on Gabapentin with some relief of some symptoms. I can swim but otherwise can hardly walk or stand. It's hard to accept this because I was a very healthy and active person before this. Overall, however, it's clear that this vaccine is a lifesaver for the vast, vast majority of people. I hope all of you here who have experienced worsened symptoms after the vaccine will improve and overcome this.

Jump to this post

Same story, but few more side effects. Tremor vibration type movement and shaky when standing and moving my hands, etc. Autonomic stuff. I did reach out to Dr. Waheed, that patient is better so there is hope we will all get over this. But, I'm afraid if I get Covid it could be bad!! No one from VAERS contacted me or the VAX registry phone app that check on us. Researchers do think that those of us with SE's may have had a horrible case of Covid if we had not rec'd the vaccine.... all this will sort out hopefully sooner than later.

Side note: It is NOT OK that the govt is try to control misinformation. The entire internet is full of misinformation but they aren't God who knows what is correct and incorrect. They have porn and all sorts of horrible things posted on the internet but that doesn't get pulled off. Way to cure cancer that are not based on science, etc....

REPLY
@littlenoise

I watched this and it was WAY to technical for me. Do you have a way to synops this in layman's terms?

Jump to this post

Those of us reacting to the vaccine are similar to the long-haulers. His research will help guide therapy to calm down the immunological cascade happening. He has a website that is a good summary: https://covidlonghaulers.com/

REPLY
@ebrinks

I developed small fiber neuropathy from the Pfizer vaccine (I believe and two of my doctors, including my neurologist, think it is likely); the temporal proximity to the shot (and no other predisposing conditions or known causes my neurologist tested me for) makes this highly likely. Two weeks after the second dose, I had sudden acute onset of burning in my ankles, which rapidly progressed to my arms, hands and face. Looking back, I recall having some minor side effects after the first dose (like occasional fatigue walking and difficulty standing, both symptoms of small fiber neuropathy). However, because they were mild, I did not attribute them to the vaccine so I proceeded with the second dose three weeks later.
Dr. Waheed, a neurologist at the Univ of Vermont medical school, published a letter to the editor of Muscle Nerve in April 2021 where he describes a clinical case of small fiber neuropathy most likely attributable to the vaccine. And my neurologist tells me that there is some "chatter" among neurologists who are seeing more patients with neuro side effects likely attributable to the vaccine. I self-reported to the VAERs system and recommend everyone do so. (The VAERs folks have reached out to my doctor/the ER room - I thought I had Guillen Barre at first and went there - and requested medical records, so they're on this). It's important to get this data into the system -- not to discredit the vaccine but to make it safer in the long run. It may take time to understand all the side effects.
It is three months since my small fiber neuropathy first emerged. It's no better but I continue to hope this will run its course, as some toxic neuropathies do. I found a cream that works very well for the burning in my feet and arms, and I am on Gabapentin with some relief of some symptoms. I can swim but otherwise can hardly walk or stand. It's hard to accept this because I was a very healthy and active person before this. Overall, however, it's clear that this vaccine is a lifesaver for the vast, vast majority of people. I hope all of you here who have experienced worsened symptoms after the vaccine will improve and overcome this.

Jump to this post

I would also love to know what kind of cream you are using. I also developed neuropathy from Pfizer first dose. Pain so bad that I couldn’t bring myself to get the 2nd dose. Can’t imagine how bad it would have gotten if I did! So now I live in not only pain but also fear of catching covid. I’m 3 1/2 months out and on a good note I am just Starting to see some improvement. Wish you well!

REPLY
@ebrinks

I developed small fiber neuropathy from the Pfizer vaccine (I believe and two of my doctors, including my neurologist, think it is likely); the temporal proximity to the shot (and no other predisposing conditions or known causes my neurologist tested me for) makes this highly likely. Two weeks after the second dose, I had sudden acute onset of burning in my ankles, which rapidly progressed to my arms, hands and face. Looking back, I recall having some minor side effects after the first dose (like occasional fatigue walking and difficulty standing, both symptoms of small fiber neuropathy). However, because they were mild, I did not attribute them to the vaccine so I proceeded with the second dose three weeks later.
Dr. Waheed, a neurologist at the Univ of Vermont medical school, published a letter to the editor of Muscle Nerve in April 2021 where he describes a clinical case of small fiber neuropathy most likely attributable to the vaccine. And my neurologist tells me that there is some "chatter" among neurologists who are seeing more patients with neuro side effects likely attributable to the vaccine. I self-reported to the VAERs system and recommend everyone do so. (The VAERs folks have reached out to my doctor/the ER room - I thought I had Guillen Barre at first and went there - and requested medical records, so they're on this). It's important to get this data into the system -- not to discredit the vaccine but to make it safer in the long run. It may take time to understand all the side effects.
It is three months since my small fiber neuropathy first emerged. It's no better but I continue to hope this will run its course, as some toxic neuropathies do. I found a cream that works very well for the burning in my feet and arms, and I am on Gabapentin with some relief of some symptoms. I can swim but otherwise can hardly walk or stand. It's hard to accept this because I was a very healthy and active person before this. Overall, however, it's clear that this vaccine is a lifesaver for the vast, vast majority of people. I hope all of you here who have experienced worsened symptoms after the vaccine will improve and overcome this.

Jump to this post

Will you please share info about the cream which relieves the burning in your feet and arms?

REPLY
@ebrinks

I developed small fiber neuropathy from the Pfizer vaccine (I believe and two of my doctors, including my neurologist, think it is likely); the temporal proximity to the shot (and no other predisposing conditions or known causes my neurologist tested me for) makes this highly likely. Two weeks after the second dose, I had sudden acute onset of burning in my ankles, which rapidly progressed to my arms, hands and face. Looking back, I recall having some minor side effects after the first dose (like occasional fatigue walking and difficulty standing, both symptoms of small fiber neuropathy). However, because they were mild, I did not attribute them to the vaccine so I proceeded with the second dose three weeks later.
Dr. Waheed, a neurologist at the Univ of Vermont medical school, published a letter to the editor of Muscle Nerve in April 2021 where he describes a clinical case of small fiber neuropathy most likely attributable to the vaccine. And my neurologist tells me that there is some "chatter" among neurologists who are seeing more patients with neuro side effects likely attributable to the vaccine. I self-reported to the VAERs system and recommend everyone do so. (The VAERs folks have reached out to my doctor/the ER room - I thought I had Guillen Barre at first and went there - and requested medical records, so they're on this). It's important to get this data into the system -- not to discredit the vaccine but to make it safer in the long run. It may take time to understand all the side effects.
It is three months since my small fiber neuropathy first emerged. It's no better but I continue to hope this will run its course, as some toxic neuropathies do. I found a cream that works very well for the burning in my feet and arms, and I am on Gabapentin with some relief of some symptoms. I can swim but otherwise can hardly walk or stand. It's hard to accept this because I was a very healthy and active person before this. Overall, however, it's clear that this vaccine is a lifesaver for the vast, vast majority of people. I hope all of you here who have experienced worsened symptoms after the vaccine will improve and overcome this.

Jump to this post

Hello @ebrinks and welcome to Mayo Clinic Connect. Thank you for joining to share your experience following your vaccine. I think it is great to hear the logic around the vaccine from you all while knowing that you have experienced a change to your health and lifestyle for the last three months. As you said, so much is still unknown so I think it wise for you to remain hopeful.

There are a few members who have asked to know what cream you have found that has provided you some relief so I will let you connect to them and respond.

Can I ask what sort of follow up your neurologist has recommended and also if you have reported your symptoms to VAERS?

REPLY
Please sign in or register to post a reply.