Shingrix and peripheral neuropathy

Posted by joannerhodes @joannerhodes, Feb 1, 2019

4 days after my 2nd Shingrix vaccination, I suddenly developed intense peripheral neuropathy in both feet…for the first time in my life…anyone else?

@iampatella

Yikes! Ricke, I feel badly for you. What side effects did you get specifically, and they have lasted for a year!!?? I am seriously reconsidering getting the vaccine!

Jump to this post

My year anniversary is next week and I can say I have “adjusted” as best possible to the discomfort. PN moderate in all my extremities with one foot often having no feeling at all especially first thing in the morning . This is most obvious when descending stairs. It has impacted my balance but not on level surfaces.
My sleep patterns are disrupted, I go to sleep feeling “tingling” sensations, experience the same while sleeping as it is reflected in my dreams and awake without relief, to continue each day. I would have to admit it’s 24/7.
I just ignore it now. Diet does impact the severity and I have been able to control my
aggressive “sleep scratching “ by eliminating all processed and GMO foods, and purchased beverages especially alcohol . No dining out at all. Only organic meat and produce. I only drink distilled water with lemon . My only “cheating” is with pure cocoa powder ( no sugar) which I can tolerate about a tablespoon in milk. The last pleasure afforded myself.
My greatest success as I refer to the feelings of “insects crawling under my skin” are attributed to intermittent fasting. 1k calories in a 4 hour window per day.
It works so that is my new normal.
Sounds horrible but it’s an improvement.
I believe that just about sums up my post vaccine experience.
I am beginning a stem cell protocol next week.
Now who’s not the optimist.

REPLY
@ricke

Unfortunately, we have much in common.
I will be involved with stem cell therapy in the next few weeks . Traditional therapies and pharmaceuticals are not an option.
At the advice of my “new” doctor, under no circumstances will I ever get the 2nd Shingles shot nor any other vaccine. I have conducted extensive research domestically and internationally and have had some improvement with pain and peripheral neuropathy .
I have made extensive dietary modifications, PT and
exercise changes. All my improvements have been
as a result of thinking outside the “box”.
I wish there were more positive results to date.

Jump to this post

I would love to hear how the Stem Cell therapy works for you.

REPLY
@slturley

Are there many people experiencing neuropathy after the Shingrix vaccine? I received the first shot in Dec 2019 and in January I started having terrible leg cramps. In Feb, I took the 2nd shot and my cramps turned to spasms and then the neuropathy started. I came to Mayo in May and was diagnosed with Benign Cramp Fasciculation. However, by July the horrible burning and electrical shock started and after many tests and biopsy, I was diagnosed with Small Fiber Neuropathy. I have said all along that this all came from the Shingrix vaccine as I had no symptoms before I took the first shot, and within 6 months I was diagnosed with severe Small Fiber Sensory Neuropathy. My Vaccine was given at Duke Medical center and they are also the ones who diagnosed the small fiber neuropathy but I can't get anyone to admit that this all came from the Shingrix vaccine. How do you go from no symptoms to severe neruopathy in a couple months. Everything that I read says that SFN is very slow progressing… Have there been any treatments identified, that you know of, that helps? Thanks for posting this. It helps to know that I'm not alone, although I would wish this on noone.

Jump to this post

I have told of my experience several times over the last two years but now I see more interest in the topic. Two days after #1 Shingrix shot, I noticed difficulty sleeping at night and having creepy/crawly feelings beneath the skin of my calfs as well as achy/tingling in my legs. Once I am up, I am not bothered by these symptoms. I followed The crumbs, finally saw a Neurologist who did the EMG and said I have sensory neuropathy with numbness on the bottom of my feet/toes, cause unknown. I have been on Gabapentin, 600 mg at bedtime and Amitriptyline 25 mg in the evening for the last 18 months. I sleep fine with these. Then the Pandemic came along and I have not been interested in changing anything. I do not want to get #2 Shingrix shot and have not had any doctor able to convince me otherwise. I had no numbness or sensory issues until the first Shingrix. My balance is good, my gait is fine and Yoga helps my legs. I don’t know if anyone is keeping a tally of these occurrences. Shingrix and chickenpox are both nerve root in origin. At first, I wanted to see if anyone had found a treatment but now I realize there is not much I can do. I have no pain. I have no belief in this improving but I can live with it. Mary Ann

REPLY

Can you take 2 different kinds of pills for the Neuropathy? I take 600 mg of Gabapentin & 60 mg. of Cymbalya but I am still in a level of 5 pain all the time except when I sleep. I know what your going through. The Cymbalta is a antidepressant & the dr. said it would help with the pain. I am better off when I keep moving. Hope you feel better.
God bless
Genie

REPLY
@tigreyes2004

Can you take 2 different kinds of pills for the Neuropathy? I take 600 mg of Gabapentin & 60 mg. of Cymbalya but I am still in a level of 5 pain all the time except when I sleep. I know what your going through. The Cymbalta is a antidepressant & the dr. said it would help with the pain. I am better off when I keep moving. Hope you feel better.
God bless
Genie

Jump to this post

Goodness, I have several medications for the pain caused by Peripheral Neuropathy. Methane is very helpful and I have gone off of it then had to add it again, when the pain came back too. It is nice to have options.

REPLY
@bethunger

Goodness, I have several medications for the pain caused by Peripheral Neuropathy. Methane is very helpful and I have gone off of it then had to add it again, when the pain came back too. It is nice to have options.

Jump to this post

Methadone, not methane! sorry

REPLY
@iampatella

Yikes! Ricke, I feel badly for you. What side effects did you get specifically, and they have lasted for a year!!?? I am seriously reconsidering getting the vaccine!

Jump to this post

@iampatella I was 81 when I received the new Shingrix shot.. I had a sore arm for a day or so .. All is well .. after seeing what getting Shingles does to one, there was no question in my mind to get it. I know of 1 instance of a person getting the shot and also getting a mild attack of Shingles as well later..

REPLY
@ken82

@iampatella I was 81 when I received the new Shingrix shot.. I had a sore arm for a day or so .. All is well .. after seeing what getting Shingles does to one, there was no question in my mind to get it. I know of 1 instance of a person getting the shot and also getting a mild attack of Shingles as well later..

Jump to this post

@iampatella, I am with @ken82 on getting the new Shingrix shot. At 77 and having seen my wife's twin sister getting Shingles on her face around her eye there is no question for me either. I got my first shot March 10th and my second one is scheduled in 8 weeks.

REPLY
@ken82

@iampatella I was 81 when I received the new Shingrix shot.. I had a sore arm for a day or so .. All is well .. after seeing what getting Shingles does to one, there was no question in my mind to get it. I know of 1 instance of a person getting the shot and also getting a mild attack of Shingles as well later..

Jump to this post

I had Shingles 3 times before getting the shingrix vaccine. I would much rather have shingles than what the vaccine did to me. At least with shingles there is hope of recovery.

REPLY
@slturley

I had Shingles 3 times before getting the shingrix vaccine. I would much rather have shingles than what the vaccine did to me. At least with shingles there is hope of recovery.

Jump to this post

Hi @stephaniet I am so sorry to hear of your negative experience with the Shingrix vaccine. Thank you for sharing to alert us of the potential health hazards. I am nearing 60 and will think twice about getting the vaccine. I share this information with my husband who was advised by his physician to get the vaccine. I have seen some folks get a Shingles outbreak. The rash is so painful. Neither my parents nor my older brother ever got the vaccine and no one in my immediate family had gotten the illness. I do believe my brother and I had the chicken pox during our childhood. My mother(90) always refused vaccines within the past 40 years. Can you share some of the symptoms the vaccine has left you with? Wish you well. Toni

REPLY

@avmmcbellar Did you or your mother refuse Measles, Polio, Flu, Smallpox, Covid… The adverse side effects for Vaccines are Rare.. Be informed before discounting vaccinations when recommended by your physician. I used to carry my vaccination card with me as I traveled the world.. Flu, Typhus, Yellow Fever, all sorts of things out there where there is no Herd immunity.. check out the link below..
https://www.cdc.gov/vaccines/vac-gen/side-effects.htm

REPLY
@ken82

@avmmcbellar Did you or your mother refuse Measles, Polio, Flu, Smallpox, Covid… The adverse side effects for Vaccines are Rare.. Be informed before discounting vaccinations when recommended by your physician. I used to carry my vaccination card with me as I traveled the world.. Flu, Typhus, Yellow Fever, all sorts of things out there where there is no Herd immunity.. check out the link below..
https://www.cdc.gov/vaccines/vac-gen/side-effects.htm

Jump to this post

Hi @ken82 My mother did not get vaccinated as a senior. She had tried the flu shot twice before deciding against it for her. Don’t forget I nor my brother had a choice for getting vaccinated if we wanted to attend the school systems. We also traveled worldwide. I am aware of the mandates for health safety. If I traveled extensively I would want to protect myself as much as I could. As a senior citizen I want to also be cautious to not cause harm to myself by getting vaccinated. What works for some may not work for others. There is always a risk involved in taking medications. I want to be certain I get all the facts before coming to a decision especially with today’s vaccines particularly the covid vaccines that use a different technique, mRNA. There are so many unknowns with those vaccines plus as an “emergency” declared vaccine no one can be liable for causing adverse effects or even death. I think it would be wise to do a follow up before deciding what is best for each individual based on their risks and medical history. I am not discounting vaccinations recommended by physicians if their reasoning is valid. No worries, as with any vaccine I am considering all the facts before coming to my own conclusion whether against it or for it. No matter what I decide, it will be me that deals with the consequences. I believe we all do our best. Research is vital when our decision can potentially affect our quality of life. Ultimately it is the choice of each patient and not their physician. I am merely doing my homework before putting my head in the sand and hoping for the best.

REPLY
Please sign in or register to post a reply.
  Request Appointment