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?

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@bwh

The shingles vaccine ruined my life. I was 100% healthy before receiving the shingles vaccine in 2014, but within two weeks developed rather severe neuropathy in both feet. My toes were completely numb and I had difficulty walking. In addition, the vaccine also caused a relatively rare condition known as erythromelalgia, which causes the feet to turn bright red and burn terribly.

Doctors were baffled by the sudden onset of two semi-debilitating conditions concurrently, until a brilliant podiatrist I saw diagnosed my conditions as being a reaction to the shingles vaccine I had received. He had experience with other patients who had the very same conditions and, like me, had received the shingles vaccine within a short time before the conditions manifested. He put me on gabapentin (1200 mg per day), which I still take to this day. It helps lessen the pain and burning, but does not cure or even come close to curing either condition. I refuse to take any opioids or other addictive painkillers.

It is now 2022 and I still suffer from peripheral neuropathy and erythromelalgia. I have "learned to live with it" but am no longer the very athletic, very fit person I was before the onset of these terrible conditions. I can no longer run, use a treadmill, do heavy weight-lifting, go mountain biking or hiking, play basketball or flag football, or enjoy any of the other strenuous or semi-strenuous activities I used to do on a regular basis. Now I must live a sedentary lifestyle and can be on my feet for no more than 20 minutes, max. My feet hurt and/or burn 75% of the time. Fortunately, immersing my feet in a pan of very cold water stops the burning, which I need to do several times a day. I can no longer wear socks of any kind, and can wear only extra-wide Crocs with a huge toebox. And no, I do NOT have diabetes; in fact, I'm not even close to being PRE-diabetic!

As a result of my life-altering negative experience with the shingles vaccine, I decided to forgo getting ANY type of vaccine, period. I have received NO vaccine of ANY type since 2014 and have not contracted a single virus, to include influenza, COVID-19, or even the common cold. (It no doubt helps that I take 20 immune system-enhancing supplements every day.) My only health issues are with my feet, thanks to the (expletive deleted) shingles vaccine. If you have not received the shingles vaccine and are undecided on whether to get it, my advice is to skip it. Why take a chance on experiencing the nasty, long-term side effects of the vaccine, as I have? Trust me, it's infinitely better to endure a single bout of shingles than a lifetime of pain and misery caused by neuropathy and erythromelalgia.

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I thought I had erythromelalgia for years when it turned out to be chilblains. One dose of nephedipine stopped it altogether and I still take it. I was going to get a shingles shot when I read what you had to say and didn't. The covid shots and boosters didn't bother me.

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@jal333

I had my second shingles shot yesterday. Last night my left arm felt tingly and kind of numb particularly a forearm part of my arm. Today I have a temperature low-grade and feel like I’m getting the flu my right arm is a little bit tingly. I’m just gonna watch the symptoms and see what happens. I had no problems after my first shot. Also I have been tested for Covid because I didn’t know if it is what could be side effects from COVID-19

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I am having a similar experience and am on day six. I dislocated my pinkie a year ago and ever since I got the second shot, I have had a lot of nerve pain in it as well. Did the tingling in your forearm go away? I know Shingles is bad but I am really hoping this doesn't persist.

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@memomsloan

I promise to go back and read in detail the CDC info. But, to answer several other questions, I entered this rabbit hole thinking I had Restless Leg Syndrome (RLS). The first symptoms of RLS came up the day I had Shingrix #1. I had a Sleep Study which showed I had no RLS or apnea. Gabapentin was started at this point. My next stop was with a Neurologist who did an EMG which showed I had Idiopathic Peripheral Neuropathy. Amitriptyline was added now. I look forward to getting more responses. What I hope for is the neuropathy could be self limiting and resolve, maybe slowly.

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What is Amitriptyline?

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@pamelaz

What is Amitriptyline?

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Originally called Elavil, Amitriptyline, is a tricyclic anti-depressant, anti-anxiety medication,.

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@memomsloan

Originally called Elavil, Amitriptyline, is a tricyclic anti-depressant, anti-anxiety medication,.

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Do it work for bad neuropathy?

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@pamelaz

Do it work for bad neuropathy?

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It is an add on to the Gabapentin to help with neuropathy.

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@memomsloan

Originally called Elavil, Amitriptyline, is a tricyclic anti-depressant, anti-anxiety medication,.

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Amitripyline caused me to gain 45 lbs so if you are prone to weight gain
be careful

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@memomsloan

Originally called Elavil, Amitriptyline, is a tricyclic anti-depressant, anti-anxiety medication,.

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Is it better then Gabapentin and Cymbalta? Mine is not diabetic neuropathy.

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@pamelaz

Is it better then Gabapentin and Cymbalta? Mine is not diabetic neuropathy.

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I take it along with Gabapentin, 600 mg, at bedtimes.

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@pogo

Amitripyline caused me to gain 45 lbs so if you are prone to weight gain
be careful

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I have taken it for 3 yrs and have not noticed this issue. Well be careful.

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