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?

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Andrea A. | @austintraining | Jan 24, 2022

Yes I have. And it didn’t exist before the two dose Pfizer. How are you doing today? I’m 53.

kimegraves | @kimegraves | Jan 24, 2022

In reply to @austintraining "May I ask what your diagnosis was?" + (show)

Yes, medicated induced lupus that led to CIDP.

Andrea A. | @austintraining | Jan 24, 2022

In reply to @kimegraves "Yes, medicated induced lupus that led to CIDP." + (show)

Thank you for sharing. How are you doing now?

cobra06252 | @cobra06252 | Jan 24, 2022

I received the Pfizer COVID Vaccine in March of 2021. No issues noted. Six weeks ago I contracted COVID (breakthrough) and recovered with no incidents...I thought. During the final days of symptoms I noticed my left thumb was numb at the tip...figured it was CARPAL tunnel. However, now it has progressed to my left pinky and ring finger and I am having pins and needles sensations in both feet and both hands with weird facial flushing and occasional heart pounding sensations but no arrhythmia. The muscles around my mouth have a delayed relaxation movement after pursing my lips on the right side. I am a HEALTHY 55 year old retired soldier and none of this was occurring prior to last month. I am not diabetic. What's going on and should I get the booster. My sister is an oncology nurse who refuses to get the vaccine. Her response so far has been, ..."told ya so". So, what's going on?

kimegraves | @kimegraves | Jan 24, 2022

In reply to @austintraining "Thank you for sharing. How are you doing now?" + (show)

I am now receiving IgG infusions but to soon to determine outcomes. Thanks for asking

Andrea A. | @austintraining | Jan 24, 2022

In reply to @kimegraves "I am now receiving IgG infusions but to soon to determine outcomes. Thanks for asking" + (show)

I believe this gentleman is also receiving the same with some early success. Have you seen this video?

debmitchell101614 | @debmitchell101614 | Jan 24, 2022

In reply to @kimegraves "I had very similar symptoms after the Moderna vaccine and it was a challenge to finally..." + (show)

Do you mind telling me what they finally diagnosed you with and what treatment they are giving you? Is it working? Please tell me there is some hope. I would like to ask my doctors to look at whatever you were diagnosed with to see if that is my issue.
It has been just over a year since this all started, it has completely changed my life and I am starting to lose hope.
Thank you.

debmitchell101614 | @debmitchell101614 | Jan 24, 2022

In reply to @austintraining "I have had the same issues on a smaller scale after receiving the Pfizer two dose...." + (show)

Good luck to you with your appointment. I hope you can get some answers and I'm interested in seeing what they say.

Andrea A. | @austintraining | Jan 24, 2022

In reply to @debmitchell101614 "Good luck to you with your appointment. I hope you can get some answers and I'm..." + (show)

I will let you know!!

athenalee | @athenalee | Jan 24, 2022

In reply to @debmitchell101614 "Hello, I'm not sure if this is allowable or not, but I wanted to share my..." + (show)

@debmitchell101614

Hello, I'm not sure if this is allowable or not, but I wanted to share my experience and see if anyone else has experienced this because I am at a loss and can find no answers/help anywhere.
I am a 55 year old female who has a history of fibromyalgia for 15+ years but was not taking any medication for it. I was living an active life other than the normal pain from fibromyalgia that I had gotten used to and accepted. I was required to get the covid 19 vaccine (Pfizer) in January 2021 in order to keep my job because I work for a nursing home company (even though I work from home). 5 days after the first dose of the vaccine I started having a vibration (feeling of cell phone vibrating) in my right hip. I thought it was a pinched nerve and after about a week or so when it didn't go away, I went to see a chiropractor. While being treated by the chiropractor, it came time for my second dose of the vaccine. Not thinking my issue was related to the vaccine, I received the second dose of the vaccine (again in order to keep my job). After the 2nd dose of the vaccine, I started getting numbness and tingling in my feet that did not go away and my entire body also vibrated every time I looked down.
Over the past year the numbness, tingling, vibration has spread to my entire body (I even feel it in my face and head now). It is constant and does not go away. My balance is very bad where I walk with a walker or cane when going out and I feel cold on the inside down to the bone. I also am now having stomach issues for the past few months. I have had 9 MRI's, a lumbar puncture, a nerve conduction study done on all four extremities and all of the normal lab workups. The lumbar puncture showed increased protein in my central nervous system, but everything else is not showing anything that would cause my symptoms. I have been to 2 different MS clinics and to 6 different neurologists and have yet to get a diagnosis or a treatment that works.
I work on a computer for a living and was off work due to my hands and fingers being numb and tingling constantly that made it very difficult work. When my FMLA ran out and even though my doctor stated that I was not able to work, my employer (who required me to get the vaccine to keep my job) on 11/1/21 denied my personal leave and stated I would be terminated on 11/5/21 if I did not return to work full time by then. I did not want to lose my job and honestly couldn't afford to lose my job, so I asked the doctor to let me try to return to work. I am currently working but having extreme difficulty and not sure that I'm going to be able to continue much longer. My doctors are doing a skin biopsy on 1/31/21 but have said if this does not show anything they do not know what else to do. Based on my reflexes they state they know something is going on, but they don't know what it is or how to treat it. I am desperate and am putting all of this out here to see if there is anyone else dealing with this and if so, what they were diagnosed with and how and if their treatment worked.
Any help anyone can offer would be greatly appreciated. I have not been able to get any medical or legal help from anyone with this and I don't know where to turn.
Thank you.

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@debmitchell101614 , I’m so very sorry you’ve not found answers and that your boss is heartless.

I developed neuropathy last year, which was diagnosed by a neurologist as being caused by Sjogren’s Syndrome. After receiving the Pfizer vaccine, my neuropathy increased significantly. My neurologist said that I had a Sjogren’s flare up due to an autoimmune reaction to the vaccine.

I’m just a patient, but I’m wondering why no one at the MS clinics didn’t suggest that you may have had a similar reaction due to having fibromyalgia. Do you see a rheumatologist?

I hope you find answers and help soon.