Recurring shingles

Posted by sdumas0001 @sdumas0001, Jan 19, 2025

I have had shingles on the right side of my right knee...7 times in the last 2 years. I am sure this is not normal. Buy my doctor does not seem too concerned. I am concerned due to the continued zinger nerve pain that I have in that spot all of the time now. Also, I have been previously diagnosed with epstein barr virus and chronic fatigue syndrome so when the shingles hits me; I feel so irritable and miserable. It makes my chronic fatigue flare up and I just have to let everything run its course. My doctor gives me a stand-by prescription of an antiviral medicine to help shorten the shingles cycle. Can someone help me figure out why this is happening. Should I find another doctor? Should I just press the issue more with my current doctor?

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Profile picture for seniormed @seniormed

The shingles vaccine would not
help with your current outbreaks.
Good idea to keep it covered to avoid transmission with skin to skin contact when it is active.
Treating the outbreaks is the most
reasonable approach. Sorry you have to deal with the nuisance recurrences. Have you seen a dermatologist for management?

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@seniormed
No, I have not. Due to my insurance, I have to have a referral to see the dermatologist. And my doctor does not think this is the way to go.

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Profile picture for strongfightingmom @strongfightingmom

I also suffer with reoccurring shingles. It figures I would fall into the rare community who does but I have learned a few things. My first outbreak occurred at age 40. I have had it about 12 times in 2 years. Mine are triggered by stress and lack of sleep. As a single mother of 3 children on the spectrum, you can imagine why I have so many recurrent episodes. I immediately take my valcyclovir as soon as I feel the whole body skin pain and feel the flu-like symptoms. It is the warning signs my body gives to alert me. The relentless migraine and extreme fatigue are two of the worst symptoms for me. Its also difficult having to explain my body’s need for rest to others who don’t understand my need to cancel appointments or events during a recurrence. I would recommend either the daily maintenance dose to avoid recurrence or have the meds on hand when you need. It is almost impossible to avoid stress and rest even during a recurrence but my body doesnt care and makes me rest in bed (hence the migraine and severe fatigue). I not sure why your doc wont offer a maintenance prescription since that should be a decision made with your input. Maybe discuss it again with them? If they still refuse and it is something you prefer then my advice is to find one who will honor your requests. Its hard to live with reoccurring shingles but you are not alone in this community! You will learn to manage it better each time.

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@strongfightingmom --- I do keep a Famvir script with me at all times so, like you, as soon as I recognize the symptoms, I start taking the med. I even carry the script with me on vacation. Lack of sleep and stress are triggers, but so is direct sunlight. Since this happens on my forehead, I always wear a cap during the daytime. I have read about that tiny % of the population who suffer with this but until I found this thread, I had never read stories directly from another sufferer. Great to finally read of others who know what this is like!

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Profile picture for thatboyaintright @thatboyaintright

I know your post is almost a year old but I just saw it. I, too, have recurrent shingles with my first occurrence when I was 20. My outbreak location is my forehead and when it first happened, I thought it was just acne. By the time I got to the doctor, it was really bad and had gotten into my eye. I can relate to the tingling at onset; the standing anti-viral script that I keep with me at all times; the incredibly intense pain; and the embarrassment when people see a 60-something year old with, from a distance, looks like an acne event. I did have the shingles vaccine when I hit the magic age and promptly had a mild occurrence. Doc told me of three main triggers and he was 100% correct: lack of sleep, stress, and sunlight (needless to say I NEVER go outside without a hat). In fact, I went outside on a fairly overcast day a week ago with a lot of stress in my life right now and little sleep for 3 weeks and – you guessed it – I have an occurrence right now. As soon as I feel the tingling and see that irritation, I immediately begin the anti-virals, put zinc oxide on the area, and shut down everything to rest for a few days. No phone calls or work or anything; just rest. My doc is really understanding so he also will prescribe Tramadol for pain when I message him at onset (not supposed to take aspirin products with chicken pox or shingles). Someone mentioned that your doc should test the area to make sure it is shingles (zoster) and not simplex and while that is an option, the difference in treatment is not that different. The test showed mine was zoster so, lucky me, I’m one of those who has to live with this as a chronic thing. You’ll learn to deal with it but it takes a while. Sorry you’re going through this. Hope you have gotten some relief.

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@thatboyaintright
If it is viral cultured and found to be recurrent Herpes simplex then you are most likely to be contagious in the day before and
with outbreaks. The treatment is about the same but make sore it is covered.

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Make sure it is covered to avoid spreading it to contacts.

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Profile picture for seniormed @seniormed

@thatboyaintright
If it is viral cultured and found to be recurrent Herpes simplex then you are most likely to be contagious in the day before and
with outbreaks. The treatment is about the same but make sore it is covered.

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@seniormed -- It was cultured and, yes, it is Zoster, not Simplex. I stay away from kids and senior adults because I know that I'm still contagious to those who've never had chicken pox or received the vaccination. When the dr first told me direct sunlight is a trigger, I thought he was crazy, but it's true. I have to be really careful because the hot sun (hot sun as in inferno Atlanta, GA, direct sun) and within a few minutes, I can feel the tingling and know what is going to be my lot for the next couple of weeks. You're right that the treatment is the same and I always make it a point to tell every new pharmacist that the Famvir is for =shingles=.

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Have you tried taking Lysine as soon as you feel the tingling? It works for me rather quickly and seems to stop viral replication.

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Profile picture for vostie @vostie

Have you tried taking Lysine as soon as you feel the tingling? It works for me rather quickly and seems to stop viral replication.

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@vostie ... Have not taken Lysine but that sounds like something I need to try. And if it can also reduce stress, them it's a win-win.

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Profile picture for sdumas0001 @sdumas0001

My doctor said that it is not recommended under the age of 50 and insurance will not cover it for my age either. This is why I am inquiring on this forum.

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@sdumas0001 ,
I have had both vaccines for shingles. It only made my episodes more frequent and worse. If you google information you will find this has been reported many times. I also had a painful reaction to the Shingrex vac. I do not recommend these vaccines. Keep your immune system strong. That is your best bet.

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Profile picture for 1fancydancer @1fancydancer

Got ya. I think that it is 60 or 63 they start paying for it. My sister got the shot when she was under 60 and it cost her $300.00. All I know is . . . . you don't want to get those shingles.

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@1fancydancer, I had both vaccines and it only made shingles worse and more frequent. I do not recommend these vaccines It is best to keep your immune system strong. Others are reporting similar results. If you search on the internet you can find these results. I do appreciate the pharm industry trying to help find help against shingles. It does not always work.

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It’s more likely herpes simplex(Fever blister virus) shingles is also a herpes virus called herpes zoster. HSV recurs in the same area repeatedly since it goes dormant in a nerve root. Usually more of a cluster of lesions than a dermatome (following the length of an entire nerve) It can also have some odd sensations after it clears. Take photos when it happens and see a dermatologist.

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