COVID vaccines and neuropathy

I totally support you - along with everyone else in this group. If it weren't for my finding this group, I would have thought i am the only one with these symptoms following the vaccine. I'm going to try some of the supplements that were suggested in previous posts. It just seems worth a try for me. As I'm writing this, my legs are burning too. I would say it's gotten "slightly" better, maybe. It's been a month. I know you're questioning if you've done the right thing. I'm agonizing over it too but I know, for me, I have to listen to my body. I can't imagine getting a 2nd shot when my immune system is apparently flared up like this. I'm thinking you felt the same way and very understandably so.

If you don't mind, would you mane some of those supplements. Thank you

I have concerns too. My Neuropathy is out of control & I just live with the pain & starting to get really depressed.
All I see is that the doctors want everyone to get it so that the covid numbers go down. They don't have enough research to know if this does bother people worse with Neuropathy. As it stands now I don't want to get it.
The J & J is only one dose so that probably would be the better one. It's just the fact that once in gets in to your system, how do you know what is going to happen.I wish you the best.
Genie

I support all of you who feel that way. We do know our bodies so listen to your gut.
It is quite the decision & hard to make the right choice . This is very scary.
Take Care
Genie

heres a reply to myself, or a P.S.
I only found Canadian Cancer Society that had SECTION re neuropathy so just sent a quick email asking what they are advising patients with neuropathy to do... yes or no re vaccine.. maybe i will get a reply... hope so, but maybe organizations don't want to be the ones to make the decision and say sure go ahead, then get sued, etc/

<p>Hello, I am trying to find people with chemo-induced neuropathy who have had the Covid vaccine. I have the peripheral neuropathy in my feet and legs.</p><p>If you have had a vaccine, can you tell me which type and whether or not it made your neuropathy worse?</p>

@emily75 you will notice that I have moved your post into an existing discussion on Covid vaccines and Neuropathy so you can connect to other members already talking about this topic and to allow you to more quickly get feedback.

I am not sure who in this discussion has experience with chemo-induced Neuropathy specifically, so let me start by asking you if you have consulted with your Neurologist on which vaccine he/she would recommend?

There is a member, joeyd5641 that posted about the supplements and that is where I got the information. Let me direct you to that person. I have no direct knowledge about these supplements as of yet so It seems better you get the information from someone who knows a bit about them. I believe it was just yesterday, so if you scroll up on the replies you should find it.

@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

Thanks for responding. Sorry to hear that the SCS stopped working and the PCP won't give you the needed dosage for the pain. What SCS did you have implanted, i.e. Boston Scientific, Nevro, Stimwave. I had tried the Boston Scientific last year. It only gave me about 10% relief so I had it removed. I might try the DRG proclaim which is manufactured by Abbott. My chronic pain is in the toes. I've talked to three people, two with foot problems and one leg pain and they got a lot of relief with the DRG.
I hope your situation will improve. Marty