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?

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kimegraves | @kimegraves | Jan 24, 2022
In reply to @debmitchell101614 "Do you mind telling me what they finally diagnosed you with and what treatment they are..." + (show)
@debmitchell101614

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.

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I have been diagnosed with CIDP and I am currently being treated with IgG infusions. Today was my third dose so I am not sure if this will help. Stay strong and always look for more information, we are learning more everyday regarding the vaccine. My prayers are with you.

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1 reply
ninette | @ninette | Jan 25, 2022

This makes a lot of sense, had the same!

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lk61 | @lk61 | Jan 25, 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 thank you for sharing. My experiences have been remarkably similar to yours. My struggle for answers has been unsuccessful. I feel like I am fighting on my own most of of the time, as my neurologist is not invested in my situation. You mentioned that the docs say there’s a problem with your reflexes. Are they hyper- or hypo-reactive? Mine are overreactive, which is troubling. However I have had cervical spine issues for quite a long time and I believe this could contribute. At times I’m convinced I have MS although MRI said I don’t. I’ve asked my MD to do lumbar puncture, which he didn’t choose to do. I may have to insist although I’m not sure if one year post it would be as useful now. At times I am very fearful of ALS also, which an EMG did rule out but I now worry that it may have been done too early. They said my EMG indicated pinched nerve root at S1 and are trying to attribute my many and varied symptoms to that. I’m very doubtful as I’ve had back problems for years and just overnight developed these other symptoms. I have strange sensations, twitching and spasms. This has been the worst year of my life, and it should have been the best. It does help to read others’ stories. Very best wishes for you!

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1 reply
debmitchell101614 | @debmitchell101614 | Jan 25, 2022
In reply to @lk61 "@debmitchell101614 thank you for sharing. My experiences have been remarkably similar to yours. My struggle for..." + (show)
@lk61

@debmitchell101614 thank you for sharing. My experiences have been remarkably similar to yours. My struggle for answers has been unsuccessful. I feel like I am fighting on my own most of of the time, as my neurologist is not invested in my situation. You mentioned that the docs say there’s a problem with your reflexes. Are they hyper- or hypo-reactive? Mine are overreactive, which is troubling. However I have had cervical spine issues for quite a long time and I believe this could contribute. At times I’m convinced I have MS although MRI said I don’t. I’ve asked my MD to do lumbar puncture, which he didn’t choose to do. I may have to insist although I’m not sure if one year post it would be as useful now. At times I am very fearful of ALS also, which an EMG did rule out but I now worry that it may have been done too early. They said my EMG indicated pinched nerve root at S1 and are trying to attribute my many and varied symptoms to that. I’m very doubtful as I’ve had back problems for years and just overnight developed these other symptoms. I have strange sensations, twitching and spasms. This has been the worst year of my life, and it should have been the best. It does help to read others’ stories. Very best wishes for you!

Jump to this post

Good morning.
I'm sorry to hear you are going through this as well. Yes, I can honestly say that this has been the worse year of my life. It is the most hopeless and helpless that I have ever felt.
My reflexes are hyper I think. They are overreactive also. I've thought the same thing about MS and so did the doctors I guess, because I've been two different hospital systems and they both sent me to a MS specialist and both times they have said it is not MS, but my symptoms mimic it very much.
I agree it helps to know that you are not alone. Hopefully soon, someone will have a breakthrough on this and they will come up with a way to help us.
Best wishes to you as well.

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1 reply
debmitchell101614 | @debmitchell101614 | Jan 25, 2022
In reply to @kimegraves "I have been diagnosed with CIDP and I am currently being treated with IgG infusions. Today..." + (show)
@kimegraves

I have been diagnosed with CIDP and I am currently being treated with IgG infusions. Today was my third dose so I am not sure if this will help. Stay strong and always look for more information, we are learning more everyday regarding the vaccine. My prayers are with you.

Jump to this post

Thank you for sharing this with me. I am definitely going to mention this to my doctor.
I am trying to and yes, I'm constantly looking for things because I want my life back. Did your doctor finally determine that it was from the vaccine? My doctors think that but won't really say it out loud. They have put on my paperwork that it started after the vaccine but won't come out yet to say it was from the vaccine.
I pray that the treatment starts working for you and you start feeling better soon.
Thanks again. I really appreciate the information.

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debmitchell101614 | @debmitchell101614 | Jan 25, 2022
In reply to @athenalee "@debmitchell101614 , I’m so very sorry you’ve not found answers and that your boss is heartless...." + (show)
@athenalee

@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.

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Thank you for sharing this information with me. I am going to ask my doctor about this next week and see his thoughts. No, I don't have a rheumatologist. I have only been referred to different types of neurologists over the past year. Not until recently would any of the doctors even mention the vaccine was a possible cause. I think it is only now that they are even entertaining the idea because they have no other idea what else it could be.
Thank you I hope they figure it out soon too.

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ninette | @ninette | Jan 25, 2022

I found this information about Novavax, the interesting part is where they say it could work well for people who are allergic to certain ingredients in MRDNA vaccines (Pfizer and Moderna) such as polyethylene glycol, which can cause neuropathy flares. We just heard that in Belgium people with a compromised immune system will get a 4th vaccine (booster) soon, so I hope I can try Novavax then, because with Moderna my symptoms got worse after every injection. https://www.nebraskamed.com/COVID/moths-and-tree-bark-how-the-novavax-vaccine-works

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1 reply
writer99 | @writer99 | Jan 25, 2022
In reply to @pacer3702 "Have you requested FMLA leave from your employer? FMLA provides 12 weeks of job protection while..." + (show)
@pacer3702

Have you requested FMLA leave from your employer? FMLA provides 12 weeks of job protection while you recover. My 30-year career was also in jeopardy. My nerve damage/symptoms from an autoimmune reaction to the vaccine are slowly improving to the point that I'm now able to return to work. Anti-inflammatory treatment might have been worthwhile for me at the peak of my symptoms, but I couldn't get an appointment with a neurologist, and when I did, he couldn't recognize my underlying problem due to the newness of the vaccines.

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I to have fibro and am not vaccinated because of multiple allergies. I found a place that will do allergy testing for the two 'identified' allergens. I was also told that the CDC has lots of information on the ingredients in some of the vaccines. I'm concerned now for any vaccine. I'm sorry that you have been so badly affected by the vaccine. I was diagnosed with fibro in 1996. There is a top doc now in rheumatology and fibro, Don Goldenberg. I'm planning to call his office or see if I can write to him to ask about this problem. Just search for Don Goldenberg. He has his own website. All the best and good thoughts that you may find something that helps.

REPLY
jgerth | @jgerth | Jan 25, 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.

Jump to this post

I'm so so sorry this has happened to you. I had flu-like symptoms after my first vaccine (moderna) and 5 days after the second vaccine it was as if someone broke every bone in my arms and hands. Or maybe took all the bones out and put them back in the wrong place. I had jaw pain, tooth pain, lock jaw, and shooting pains down my arms and legs, muscle spasms, muscles that would seize and not let go, burning and numbing/tingling. I'm a clarinetist and teacher.....and according to 2 Universities where I teach, I am "unvaccinated" because I have refused the booster. My symptoms have dissipated over the past 10 months but have not gone away by any means. I've been seeing my chiropractor because my Doctor of 25 years has been of NO help....however, my chiro team has been amazing! The only thing that has helped is extra rest, vitamins and homeopathic medicines and epsom salt baths. My main take-away (thank goodness for this group) is that I'm NOT alone! I too am a 55 year old female and my regular doctor and team told me I'm getting old and denied that this sudden onset of extreme symptoms could be linked to the vaccine. I was ridiculously healthy before this - a runner and yogi. I'm so upset that they dismiss women - especially older women....and folks need to talk about these side effects because I think they are more common than we realize. The vaccine needs to be tweaked - but it will only improve if enough people tell their stories. Thank you for sharing yours!

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