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.

@artist01

@jimhd My phone is a Samsung Galaxy S9, two years old now, and some phones don't have the small vertical lines at the bottom left. Does your phone have another way to retrieve several screens you've worked on? I'm like you, too - if I have to redo the message, it's short and sweet, cuz I can't remember half of what the original post said!
I think that pump sounds like a good idea for you, since you often miss your med times. Not good. It can be dangerous to have your blood sugars go too low. Been there, done that.
Just sayin'.
Take care, Jim. Warm regards, Laurie

Jump to this post

My last phone was a pixel, and my new one is an LG thinq. I don't think it's happened on this LG.

When I forget to take my morning meds, my body tells me after a couple of hours, with a feeling that's similar to low sugar. I'm not diabetic, thankfully, partly because I have always been careful about my diet and weight. Right now, my wife thinks I'm underweight, and it's true that I've dropped some pounds, but I eat regular size helpings and eat a few small pieces of candy during the day. So, I've been putting ensure in my coffee, and have started using whole milk on my cereal. I'm 6'2", and my target weight is 150-155, but for some reason I've fallen to 140. I thought that when winter came I'd put the weight back on because I'm not spending 6 hours a day working in the yard. I guess working on my tractor is pretty good exercise. I'm cleaning the whole thing, including a front loader that was added on at some point in its life, getting it ready to paint. It seems like I remove something else every day so I can get access to all of the places where there's dirt and grease. This evening I took off one of the rear fenders - a tough job because after bolts have been in place for 68 years, they don't come loose very easily.

Having a project helps with depression and anxiety. It focuses my mind on something beside my mental and physical health. I don't think about how depressed I am or how much my feet hurt. I started working on the tractor in September, and moved it to a carport, out of the weather. Usually my Cadillac is there, but I took it to my mechanic 5 months ago because the computer was saying something was wrong. Before he got to my car, he had brain surgery, and then 3 more surgeries, so he got a new surgeon who told him that the work that had been done was all wrong. So, he finally got the right procedure, and has been going through physical therapy. I'm hoping he'll be able to get back to work on my car soon, cuz I like driving it. Of course, the tractor has stolen its spot, but I hope that I'll have it put back together before yard work starts consuming my time.

As you can see, once I get started writing, it soon becomes a short novel. I need to shut down for the night and get in the shower - something that has become more necessary since I started working on the tractor.

Jim

REPLY
@avmcbellar

@jimhd yes, the pump would provide the medication directly into the blood stream which will be a quicker route. Hopefully you won’t miss a dose. You just have to remember to push the button for your pain meds.
I wasn’t referring to neurosurgery causing double vision. In my case it was the AVM that was the cause but the repair resulted in neuropathy for me. For some folks the cause may be medication. Look at your medications to see if double vision can be a side effect. I would go to a neuro ophthalmologist NOT an ophthalmologist for help. Neuro ophthalmologists are few and harder to find. They deal with double vision and can tell you if yours is related to a nerve problem.
How soon will you be getting the pump? Wish you well. Toni

Jump to this post

@avmcbellar I don't have a timeline for the DRG stimulator trial or pain pump. It's been more than a month since the neurosurgeon called me, and I need to call him back to see if he's made any progress finding a pain doctor in central Oregon who manages pain pumps. My memory is telling me in a faint voice that I looked for a neuro ophthalmologist, but I don't remember what I found. I suspect that I'd have to go to Portland, which is a 3 hour drive from my home. We haven't been inclined to go there since the pandemic began because that's where most of the cases of Covid19 are. Maybe by spring the numbers will have come down enough to make my wife comfortable with leaving our safe home.

Our world has certainly changed this year. We pray for a turnaround in the (not so new) year ahead.

Jim

REPLY

I have had a pain pump in my back for several years. Yes, it does help. I have not been able to discontinue use of other pain management but I have been able to reduce my need for pain pills. I notice that most therapies want their own to fulfill all the needs. It doesn't seem that is the case, unfortunately. However, all help is valuable.

REPLY
@athenalee

Thank you for sharing. I’m glad that you’re symptoms returned to normal. I got my vaccine through Lahey where I got my transplant. So, I’m going to contact my nurse to see if others have reported worsening neuropathy symptoms after the vaccine. It is certainly uncertain territory as more of us with illnesses receive the Covid vaccine.

Jump to this post

Just received my 1st moderna shot 12 hours ago. I have neuropathic like sensations with my left foot and side of the left leg. In addition I have pin pricks intermittently and randomly over my body

REPLY
@jimhd

My last phone was a pixel, and my new one is an LG thinq. I don't think it's happened on this LG.

When I forget to take my morning meds, my body tells me after a couple of hours, with a feeling that's similar to low sugar. I'm not diabetic, thankfully, partly because I have always been careful about my diet and weight. Right now, my wife thinks I'm underweight, and it's true that I've dropped some pounds, but I eat regular size helpings and eat a few small pieces of candy during the day. So, I've been putting ensure in my coffee, and have started using whole milk on my cereal. I'm 6'2", and my target weight is 150-155, but for some reason I've fallen to 140. I thought that when winter came I'd put the weight back on because I'm not spending 6 hours a day working in the yard. I guess working on my tractor is pretty good exercise. I'm cleaning the whole thing, including a front loader that was added on at some point in its life, getting it ready to paint. It seems like I remove something else every day so I can get access to all of the places where there's dirt and grease. This evening I took off one of the rear fenders - a tough job because after bolts have been in place for 68 years, they don't come loose very easily.

Having a project helps with depression and anxiety. It focuses my mind on something beside my mental and physical health. I don't think about how depressed I am or how much my feet hurt. I started working on the tractor in September, and moved it to a carport, out of the weather. Usually my Cadillac is there, but I took it to my mechanic 5 months ago because the computer was saying something was wrong. Before he got to my car, he had brain surgery, and then 3 more surgeries, so he got a new surgeon who told him that the work that had been done was all wrong. So, he finally got the right procedure, and has been going through physical therapy. I'm hoping he'll be able to get back to work on my car soon, cuz I like driving it. Of course, the tractor has stolen its spot, but I hope that I'll have it put back together before yard work starts consuming my time.

As you can see, once I get started writing, it soon becomes a short novel. I need to shut down for the night and get in the shower - something that has become more necessary since I started working on the tractor.

Jim

Jump to this post

Hi Jim@jimhd may I suggest using your phone as a reminder for your pills. Set an alarm to ring daily at the different times you need. Toni

REPLY
@steeldove

@athenalee I wonder how many that have noted increased neuropathy symptoms after COVID vaccine live in areas of the country that have been experiencing freezing, freezing weather. Does your neuropathy get worse when its cold?

Jump to this post

Not that I’ve noticed but i seldom go outside

REPLY
@avmcbellar

Hi Jim@jimhd may I suggest using your phone as a reminder for your pills. Set an alarm to ring daily at the different times you need. Toni

Jump to this post

@avmcbellar Great idea to use our cell phones for reminders. I've been using "Alexa" too. Even wakes me from a nap when I set so I don't sleep more than 20 minutes or so.

REPLY
@artist01

@avmcbellar Great idea to use our cell phones for reminders. I've been using "Alexa" too. Even wakes me from a nap when I set so I don't sleep more than 20 minutes or so.

Jump to this post

@avmcbellar I like that idea also

REPLY

@artist01 I use my phone for reminders of meetings all the time. That is another good use for an alarm. I make sure the volume is high enough. Alexa makes reminders and alarms even easier. Wonderful idea. Maybe our phones will listen for voice commands in the future without us having to activate a button for voice commands. Toni

REPLY
@joeyd5641

How is everyone who got a new onset or worsening of neuropathy from the vaccine doing now? I seem to be having some let up the last few days , but I am megadosing Alpha Lipoic acid, b12 and Vitalituses Palmitoylethanolamide . These have worked in the past for me also. I recommend for anyone with Neuropathy. I did report my case to VAERS. Let me know if any of you are feeling better after the neuropathy induced by the vaccine. If there are 15 or so of us here, there must be so many more suffering after the shot also. I am glad though to be protected from Covid, but holy cow there should be a warning for the neurological possiblities. Does anyone know anyone who didnt have any previous neuropathy that now has it from the shot? Regards, Joe

Jump to this post

I am sorry to see that you also had negative experience with the covid-19 vaccine. I too had severe neurological pain, extreme cold feeling all along left side, numbness, burning, low back pain. I was barely able to walk 4 days after 1st Moderna shot. I too reported my experience to VAERS. After 18 days better but still not same as before vaccine. Soon due for second shot. Very uncertain what to do. Any information would be useful. Thank you,

REPLY
Please sign in or register to post a reply.