1. < Neuropathy

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.

emily75 | @emily75 | Mar 29, 2021
In reply to @dwlowrance "Hi Emily- I received both Moderna vaccine shots with little to no side effects on the..." + (show)
@dwlowrance

Hi Emily- I received both Moderna vaccine shots with little to no side effects on the Peripheral Neuropathy in my left leg. The second and last shot was 10 days ago. My pre-vaccine concerns were the same as yours. Hope this information is useful and passes the Mayo censorship team. Have a great day. Dave

Jump to this post

Thank you for the info.

REPLY
athenalee | @athenalee | Mar 29, 2021

I wrote the Foundation for Peripheral Neuropathy about the increased symptoms I developed after receiving the Covid vaccine, which continue to get worse. I had come across an article on their website where one of their medical advisors recommended that people with PN get the vaccine. I asked if they had heard of others who had experienced similar reactions or if they knew of any research on people with PN receiving the vaccine. I also explained that there are a number of people on the Mayo Connects neuropathy discussion group who have had similar experiences. Here is the response:

“Sorry to hear about your continued health problems that may have been further exacerbated by the COVID vaccine. There’s nothing more we can really say or do about the issue. Our scientific advisers told us that they are recommending the vaccine for all PN patients, because the risks of being damaged by the virus far outweigh the damage that can be caused by the vaccine. We have had many PN patients tell us that their PN is now worse due to the virus, and some even developed PN as a result of the virus.

If the issue persists, you may want to talk to your doctors about any detox protocols they might be aware of. If not, you might want to search Google for doctors who prescribe some sort of detox protocol.”

Sadly not helpful...I do understand about the concerns if those of us with PN get Covid. However, I continue to find it frustrating that no one is even listening to those of us who took this advice and are now paying the consequences.

REPLY
1 reply
milly93 | @milly93 | Mar 29, 2021
In reply to @kathleen123 "By exacerbate I mean I had very little neuropathic problems in my arms until after the..." + (show)
@kathleen123

By exacerbate I mean I had very little neuropathic problems in my arms until after the 1st shot when I developed burning, pins and needles, coldness and weakness in my arms. On a scale of 1-10 I’d say it went from a 1 or 2 to about a 5 or 6. It’s been 3 weeks and it hasn’t gone away. I’m going to go ahead and get the second shot on Tuesday.

Jump to this post

Have your symptoms improved yet? My neuropathy symptoms increased after the thePfizer vaccine, also-especially after the second one two weeks ago. I'm hoping that my neuropathy will return to normal soon-and hope that your neuropathy has settled down already!

REPLY
martyk | @martyk | Mar 31, 2021
In reply to @jimhd "@martyk I'm sorry for taking so long to respond to your message. I haven't had a..." + (show)
@jimhd

@martyk I'm sorry for taking so long to respond to your message.

I haven't had a DRG implant yet. I did have a spinal cord stimulator implant in June of 2017. I had been in terrible pain, and the SCS gave me around an 80% reduction. It was wonderful! It lasted for a year, then I needed a recalibration of the controller from time to time. Then, I had to get it adjusted every 3 months. Then it just did less and less, until last year, I turned it off for a month and couldn't feel any difference.

Now, the only thing that's touching my pain is morphine sulfate contin. I've tried so many medications - first, what my pcp prescribed (the typical meds for peripheral polyneuropathy, Gabapentin, etc), then what my neurologist prescribed, and then the pain specialist. There's nothing else to try. My pcp prescribed the morphine several years ago. Before the stimulator implant, I tried tapering off the mscontin, and after 2 weeks without any, I definitely knew that it was working. When I started it back up, I made a serious mistake of only going up to half of what I had been taking. I say it was a mistake because when the pain increased, he wouldn't raise the dosage. A few months ago, he grudgingly increased it an insignificant amount, and refuses to prescribe a therapeutic dosage.

Said all that to say why I'm hoping to get a pain pump implant. The specialist at OHSU told me that he requires a trial of a DRG stimulator. My thinking is that it would help for a while, then stop treating the pain like the SCS has.

Have you looked at the neuropathy discussion about stimulators? I only do my writing on my phone, so I can't do a lot of things that are done with a computer, things like giving you the link. There's been a lot of conversation in the neuropathy blog.

Pain is no fun, is it.

Jim

Jump to this post

Thanks Jim. I decided today to give the DRG SCS the 7or 8 day trial. I believe it will be implanted April 12th and removed April 20th. Chronic pain is so awful. Three of this doctor's patients two with foot problems and one with a leg problem told me that got significant pain reduction and they recommend it. Hope this helps me and others.

REPLY
athenalee | @athenalee | Apr 4, 2021
In reply to @athenalee "I wrote the Foundation for Peripheral Neuropathy about the increased symptoms I developed after receiving the..." + (show)
@athenalee

I wrote the Foundation for Peripheral Neuropathy about the increased symptoms I developed after receiving the Covid vaccine, which continue to get worse. I had come across an article on their website where one of their medical advisors recommended that people with PN get the vaccine. I asked if they had heard of others who had experienced similar reactions or if they knew of any research on people with PN receiving the vaccine. I also explained that there are a number of people on the Mayo Connects neuropathy discussion group who have had similar experiences. Here is the response:

“Sorry to hear about your continued health problems that may have been further exacerbated by the COVID vaccine. There’s nothing more we can really say or do about the issue. Our scientific advisers told us that they are recommending the vaccine for all PN patients, because the risks of being damaged by the virus far outweigh the damage that can be caused by the vaccine. We have had many PN patients tell us that their PN is now worse due to the virus, and some even developed PN as a result of the virus.

If the issue persists, you may want to talk to your doctors about any detox protocols they might be aware of. If not, you might want to search Google for doctors who prescribe some sort of detox protocol.”

Sadly not helpful...I do understand about the concerns if those of us with PN get Covid. However, I continue to find it frustrating that no one is even listening to those of us who took this advice and are now paying the consequences.

Jump to this post

I attended the "FPN Webinar: Managing Peripheral Neuropathy AND a Pandemic: Ask an Expert.” The vaccine was discussed at the top of the webinar. Apparently a number of people had written in about their NP symptoms increasing after the vaccine. It was basically dismissed as something that we have “attributed” to the vaccine, when in fact it was just a normal change in our symptoms. And of course to tell our doctors...

Link to the recording: https://register.gotowebinar.com/recording/viewRecording/5493381507243281933/292238510063759628/athenalee1@comcast.net?registrantKey=7378302878389515787&type=ATTENDEEEMAILRECORDINGLINK

REPLY
tigreyes2004 | @tigreyes2004 | Apr 7, 2021

I am scared to have my shot but I am going on Sunday to get the one time J&J shot.
My dr. recommends I get it sooner than later.
I have the neuropathy in the feet & legs so I am worried but I am going to do it & so is my husband.
I will let you know what happens.
Glad we're back on line.
God bless.

REPLY
4 replies
Mentor
Merry, Volunteer Mentor | @merpreb | Apr 7, 2021
In reply to @tigreyes2004 "I am scared to have my shot but I am going on Sunday to get the..." + (show)
@tigreyes2004

I am scared to have my shot but I am going on Sunday to get the one time J&J shot.
My dr. recommends I get it sooner than later.
I have the neuropathy in the feet & legs so I am worried but I am going to do it & so is my husband.
I will let you know what happens.
Glad we're back on line.
God bless.

Jump to this post

@tigreyes2004 |- Welcome to Mayo Clinic Connect. Good for you! Although I am excited about having my second one this Sunday I also have a certain fear. So I know what you mean. It's new and it's scary, especially for those with underlying illnesses. In the US we have only been injecting people for about 8 months, not a very long time at all. But the risk of contracting COVID-19 is far more severe than the risk of having the vaccine and a reaction to it.

I think that every one of us who has the vaccination is a pioneer! We are brave and willing to help stop this deadly virus. Our sore arms and aches are our badges of honor! Good for you! I hope that you feel proud!

REPLY
1 reply
chezpl69 | @chezpl69 | Apr 7, 2021
In reply to @tigreyes2004 "I am scared to have my shot but I am going on Sunday to get the..." + (show)
@tigreyes2004

I am scared to have my shot but I am going on Sunday to get the one time J&J shot.
My dr. recommends I get it sooner than later.
I have the neuropathy in the feet & legs so I am worried but I am going to do it & so is my husband.
I will let you know what happens.
Glad we're back on line.
God bless.

Jump to this post

good luck

REPLY
chezpl69 | @chezpl69 | Apr 7, 2021

Does anyone here take gabapentin? My doctor prescribed it for the burning I'm experiencing after taking the first shot of the pfizer vaccine. Are the side effects as bad as they say?

REPLY
2 replies
athenalee | @athenalee | Apr 7, 2021
In reply to @chezpl69 "Does anyone here take gabapentin? My doctor prescribed it for the burning I'm experiencing after taking..." + (show)
@chezpl69

Does anyone here take gabapentin? My doctor prescribed it for the burning I'm experiencing after taking the first shot of the pfizer vaccine. Are the side effects as bad as they say?

Jump to this post

I have taken a low dose of Gabapentin for two years, 200–400 mg, first for liver pain, but now for neuropathy pain (just to note, I only weigh 110 pds. and have a good metabolism). I take it in the evening, as that’s when the pain is worse and it helps me sleep. I’ve not had any side effects from it.

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.