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← Return to COVID vaccines and neuropathy
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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.
Replies to "Hello, I'm not sure if this is allowable or not, but I wanted to share my..."
I had very similar symptoms after the Moderna vaccine and it was a challenge to finally receive a diagnosis. It took over a year and many providers before I received
a diagnosis and started treatment. Stay strong and continue to read, ask questions and continue seeing providers until you are satisfied. The vaccine is still fairly new and many providers are not familiar with all the side effects that have been seen.
I have had the same issues on a smaller scale after receiving the Pfizer two dose. I’m in the process of being evaluated and have first appointment with Mayo Internal Medicine in Feb.
@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.
@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!
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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Your situation is terrible! I'm so sorry this happened to you. There are many reports of similar vaccine-related internal vibration issues among the members of the Facebook group Neuro V Long-Haulers. I encourage you to join. Some are able to document an autoimmune, inflammatory response by sending a blood sample to CellTrend lab in Germany. They accept international shipments and provide instructions on their website. I'm hoping such documentation will help you to keep your job.