Shingrix and peripheral neuropathy

I developed SFN in both feet four days after my second shingles shot. I was given no information in advance about side effects other than being told my arm would be sore for a few days. When I told my doctor about the neuropathy, he said it was doubtful the shingles shot caused it. Guess it just magically appeared. My neurologist said there is no way to know for sure. Neuropathy sucks for sure. I retired at 60 years old one month before I got neuropathy and now all my plans are ruined.

Hello @daj3333, Welcome to Connect. Sorry to hear your neuropathy developed after your second shingles shot. That's the pits for sure. I've had it since my 50s and I'm fortunate that I only have numbness and no real pain. One thing you can do to help yourself is learn as much as you can about your condition and what possible treatments may provide some relief for your symptoms. The Foundation for Peripheral Neuropathy has a lot of great information that I think you might find helpful to help you make new plans -- https://www.foundationforpn.org/living-well/.

What symptoms bother you the most?

I have tingling and burning on the bottom of both feet. It’s not always in the same spots. Any walking or standing for more than a few minutes brings it on. Other times, it starts for no apparent reason

Because my original diagnosis was GBS, then CIDP, now it’s SFN (I’m waiting for punch biopsy results), I’m not going near the shingles vaccine.

That said, has anyone here gotten shingles and has it affected your neuropathy?

I’m more scared of the vaccine than shingles, but those who’ve had shingles say it’s the worst thing they’d ever felt. Well, most sufferers haven’t had neuropathy so I’d be interested to see how those with neuropathy have done.

No good choices with stinkin’ nerve pain!

I had shingles on my scalp. My doctor gave me Betaderm which soothed it. I too would rather have shingles than another vaccine.

I have experienced the same issues. I have intense neuropathy in both feet and my left hand since the shots.

I came down with sudden disabling idiopathic neuropathy 7 years ago. 3 yrs ago cancer was discovered and I went through chemo-radiation, and at a weak point came down with Shingles. It was awful awful awful. I won’t say it affected my overall PN though; while my Shingles latched on to my Ulna nerve in one arm, it’s only that area that seems to have lingering effects.
So in 2021, I received the 2 Shingrex Vaccines over a 5 months period with 2 Covid Vaccines fit in properly between as advised by my doctors. All of those vaccines left me with sore arms, but none of them worsened (or improved) the Neuropathy I already had going into it. The pain of the vaccine was absolutely nothing compared to the Shingles I had!
My regret is not having the Shingles Vaccine when I was eligible. I asked for it when I turned 50 since my brother got it terribly when he was 49, but I was told it I needed to be 60 years old since the vaccine was then Zostavax. When I was 53, the Shingrex vaccine came out which recommended age 50 to get, but I “never got the memo” so was still waiting until I reached 60 (I got Shingles when I was 55)
All of us respond differently and have different health issues, but for me, I had no additional neuropathy affects from the Shingrex vaccine and wish I had gotten it earlier.

Same here. Within a week of my 2nd Shingrix vaccine I started having neuropathy in my feet and legs. I wish I could have been given a list of the most severe side effects, before sitting down for the shot. Someone at the FDA said that that information is inside the box that the Shingrix vile came in. So, how were we to read it? They are willfully withholding this information. All the pharmacist said was that I would have a sore arms for a few days. Not. If I had been able to see the worst case side effects I could have made an educated decision. I would gladly have shingles instead of lifetime neuropathy.

Within days of having Shingles 5 years ago, I got neuropathy in my feet. After getting the 1st Shingles vaccine last July, my gait considerably worsened and I had to start using trekking poles to go on a short walk. I told my Neurologist about it and she told me to get the 2nd Shingrix vaccine, which I did last December. I am sorry that I did, as I developed PN in my hands! Worse then the pain was the tender/sensitive fingertips, making any activity with my fingertips painful. We need our hands for everything, cooking, putting shades up, bathing, shampooing, etc, etc For some odd wonderful reason the sensitivity has lessened. I had to have someone come cook for me for awhile. The intense pain is nearly gone, thank goodness, though occasionally, I awaken with severe pain in my left thumb, which only lasts for about 10-15 minutes. The 4 plus hours of pain nearly did me in. I tried a quarter to a half of the 100 mg capsule of Gabapentin, but was so hung over for 24 hours, I could barely function. What worked for the intense pain was a Shingles cream, by Dermachange, that I bought online. The general Neurologist, after hearing my whole history, did not think it related to the Shingrix vaccine. He thought that the PN had progressed. However, I think that I understood the Neurophysiologist who did the testing, say that PN can develop from vaccines, and that it usually happens in about 3 weeks. I will check with him before getting the flu
Covid vaccine in the fall. I had had a lot of vaccines in a short period of time, 2-3 years, 5 Covid, 2 flu, 2 Shingrix!

My husband got shingrix and then developed painful mouth sores which lasted a few weeks and went away. A few years later he got the Covid vaccine and developed numbness in his tongue. Got the 2nd vaccine and the whole left side of his mouth is numb and his tongue feels on fire some of the times. Doctors say it is a coincidence and not related to vaccine. 🤷‍♀️