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.

dhamil | @dhamil | May 21, 2021

In reply to @athenalee "There are a lot of unknowns with the vaccine. I’ve only had neuropathy since November, now..." + (show)

I’m so sorry this is happening to you! How long has it been now since your 2nd shot?

tcp36c | @tcp36c | May 22, 2021

In reply to @sueinmn "@dhamil & @tcp36c My pain was not worse after the second injection. It is resolving -..." + (show)

Yes, I totally understand the desire to get back to some normality. I haven't seen my sister since February last year. I've not been to the dentist, opticians or hairdresser either. I doubt whether I'd survive Covid anyway.
The nerve pain has increased more than ever all over my body and head, and I've developed possible Gastroparesis. That on top of Ehlers Danlos Syndrome, POTS, Autonomic Dysfunction, Secondary Adrenal and Thyroid insufficiency, diabetes and NAFLD, MCAS, scoliosis/stenosis is tough for me. I'm pretty much housebound anyway so see very few people. I'm pretty much bed bound these past weeks. I really don't know what to do. I'll speak to my GP on Monday.

athenalee | @athenalee | May 22, 2021

In reply to @dhamil "I’m so sorry this is happening to you! How long has it been now since your..." + (show)

Thank you. Second shot was March 3.

Merry, Alumni Mentor | @merpreb | May 22, 2021

In reply to @tcp36c "Hi. I have neuropathy and several other health conditions. I had the Pfizer vaccine in January..." + (show)

Hello and welcome to our new group members. I want to tell you all the story behind my decision to be vaccinated because I am encouraging you all to do just that.

It's easy for me to sit at my computer and try to convince you all to continue to finish your shots when I am not in pain nor do I have neuropathy. I chose to be vaccinated against covid-19 because I simply do not want to die. I am a 23+ lung cancer survivor and know that if I contracted covid-19 I'd probably not survive. I know what it feels like to struggle to breathe and gasp for air after my surgeries because of the swelling surrounding my lungs and the injury caused to them from the surgery.

Before more was known about the vaccines I was fearful that they would give me Covid. I also have discoid lupus that has been in remission for years and was afraid that it might be reactivated. My twin sister died from complications of systemic lupus and a long history of drug abuse. I was also afraid that my discoid would turn systemic, which I was told could happen.

But, I went ahead anyway and had my vaccinations. I have PTSD and being isolated from my sister and other family members was putting me in grave danger of further depression from being isolated. I didn't want to live like that. And, after fighting lung cancer for so many years I didn't want to chance being done in by this virus.

When I first had cancer I had to decide how I wanted to live, if I wanted to fight it, would I have radiation, surgeries, chemo, and or other treatments? I made the decision to fight and live the way I wanted to. That meant a lot of life changes including ditching my cigarettes after 35 years, changing my diet, exercising, and many other things. To me not having the full course of the COVID-19 vaccines would be null and void to all of that. And since I had already had made life choices when I first had cancer it was a relatively simple decision for me to chose to be vaccinated, regardless of side effects.

I want you to know that as an honored Mentor for Mayo Connect my job is to offer you support and understanding and present science-based recommendations. I do understand neurological pain. And that the pain of neuropathy can be very debilitating and how difficult it must be to decide to take the chance to increase it or not by having the full course of these vaccines. It's certainly not an easy decision. But this is my ask.

I have posted many times before to encourage you all to be vaccinated because to me taking the chance of surviving covid is not an option and shouldn't be for you. But there it is, the encouragement from me to you: asking you to take a chance with the vaccines and possibly more pain so that you can live among your family, neighbors, and not be isolated. I'm asking you to take the chance of feeling worse because COVID-19 and its variants are killers and the virus is devastating, causing so much bodily damage that all your systems shut down from the lack of oxygen causing great great pain suffering and then you die. It's your decison.

tcp36c | @tcp36c | May 22, 2021

I understand the reasoning behind what you are saying and I, too, wanted very much to get vaccinated although I am pretty much housebound with all the conditions I suffer from but it was with a heavy heart I have had to decline the second as I'm now more disabled than I have ever been and I do not want to spend the rest of my life in bed. Extreme nerve pain all over day after day is hard to live with and now it's been cranked up several notches for me it's pretty unbearable. As it stands the second vaccine will be effective for around six months and as I'm in the house 99% if the time it will greatly limit my chances of getting Covid as I don't socialise and rarely see family etc. For most people their lives aren't like mine and they can make the decision to go ahead with the first and second vaccines, unfortunately I cannot. I would most likely not survive Covid anyway as I have too many health problems. Then there will be on going vaccinations maybe once or twice a year.

I do advocate having the vaccine of you are able to tolerate it, but if you have had a bad reaction to it then you have to make a decision. I knew it was a big risk for me as I react to a lot of foods and medications.

Today I am bed bound, in great pain and only able to take some liquid. I've no doubt I've got symptoms of Gastroparesis as I had mild symptoms before. Sadly my sister is desperate to come and visit us but I'm too unwell to see her.

You have been through a lot with your health, too, and you took the chance on the vaccine and luckily you are ok. I hope many more people are in that situation. I have many online friends who are either okay after the vaccinations or are feeling poorly. I seem to be the only one who has had such a bad reaction. As the doctors say I am a complicated case!

Merry, Alumni Mentor | @merpreb | May 22, 2021

In reply to @tcp36c "I understand the reasoning behind what you are saying and I, too, wanted very much to..." + (show)

@tcp36c- Thank you for your response. I feel so badly that you are so ill and even worse since your vaccination.
There are exercises that you can do to help loosen up your muscles to help with this and to help get out of bed. Are you interested in anything like this?

suzanne2 | @suzanne2 | May 23, 2021

As a kindergarten teacher I have become very attached to my students. One little guy is now going to have to cope through his life without his mom. She died blast week end from COVID. She never had the opportunity to get vaccinated! I am so depressed for Rieyker!

Sue, Volunteer Mentor | @sueinmn | May 23, 2021

In reply to @suzanne2 "As a kindergarten teacher I have become very attached to my students. One little guy is..." + (show)

I am so sorry about the little boy losing his Mom. I have heard so many heartbreaking stories this past year that it is hard to take in. We have a large Hmong community inthe Twin Cities, and for some unexplained reason they have lost way to many of our best and brightest women in the prime of their lives - educators, community organizers and politicians. The same has happened to the younger Hispanic leaders in our winter home in Far South Texas.
It is also frightening to hear of the long-term health issues so many are suffering.

If it seems appropriate, please tell your young Rieyker that our 14 yo neighbor, also named Rijker, came home the first day he was eligible and insisted that his Mom take him to be vaccinated to protect his little nephew.
Sue

mangamaker | @mangamaker | May 25, 2021

In reply to @merpreb "@avmcbellar- There are a lot of rumors and misinformation around concerning the vaccines. They were approved..." + (show)

@merpreb

@avmcbellar- There are a lot of rumors and misinformation around concerning the vaccines. They were approved on an emergency basis in the US. The reason that they were approved on an emergency basis was that the trials were so successful in the early stages that instead of letting so many people more die, they were approved. The vaccines are 100% safe and extremely effective, according to experts such as our own Dr. Gregory Poland.

There are some people whose underlying disease see exacerbations, this is true. Having neuropathy puts you at a higher risk, not lower, for contracting COVID-19 or its variants. Right now The Kent Variant (from Britain) is the most prevailing COVID-19 variant and is much stronger than the original COVID-19. Waiting to see if this will change again, in the future might be like going to a card reader. No one can tell you what effects any vaccine ever produced will have on you. What Dr. Poland has said is that you will not be hospitalized and you will not have a severe illness. Vaccines do give immunity to disease but never has anyone said that it is 100% succeeful, about any vaccine!

The vaccines do not make antibodies in our bodies. We do, at their direction. COVID-19 vaccines send a message for our bodies to do this. There are no viruses in the vaccines.

Today is my second vaccine shot. Am I apprehensive, of course? But for the sake of my health and for those I love and for those around me I am having it.

I love what Dr. Poland asks, "Would you barrel down a highway without seatbelts, good tires, brakes, and airbags?" Of course, you wouldn't. But this is what you are doing by not getting the vaccine. You are also taking a chance of infecting others as well as yourself and being hospitalized or dying.

We all want herd immunity, but unless about 75-100% of the population has the vaccines the virus will just continue to mutate and the variants will continue to become more powerful and we will be back to square one, needing another type of vaccine. Each variant is stronger than the one before in its quest to survive. By not being vaccinated we are allowing this and risking the health of everyone your love and your community.

I have reams of underlying conditions as well as an autoimmune disease and lung cancer (for the past 23 years). Of course, I'm apprehensive that my immune response won't be what I want. But to me, it's better than living whatever time I have left without my family and my small community. My cancer has sure squelched my freedom, and this past year has been horrendous. This is not the way I want to live the rest of my life.

Viruses can't mutate if they can't replicate. Vaccines prevent this.

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I want to get vaccinated but can't find out if Pfizer or Moderna are Flouroquinolones. I've been floxed and don't want to go down that path again. Johnson & Johnson is a flouroquinolone. Google has removed the info about Moderna and Pfizver. I also want to know more about the remidesiver or however it is spelled. I'm writing to you to ask how it went when you got the vaccine with your issues. I hope you are fine. Did it work out? Any side effects?