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Sharing my experience - recurring shingles

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I'm a 35 year old female and have had recurring shingles for about 7 years which occurs anything from 3-7 times a year and occasionally back to back. It is always a small cluster of itchy/stinging spots at the base of my spine and thankfully, the only other symptom can be overly sensitive skin down the back of my thighs. It is the only 'illness' that I ever suffer from - I never get colds or other 'bugs' that seem to plague everyone around me. So, the main guidelines about shingles are very general and should not discount anyone who suffers from this if they fall outside the norm for the condition i.e. over 50, poor immune system, you only get it once, spots appear on the sides, chest or face etc. as I don't fit any of these but have had tests and confirmation.

My advice to anyone else who suffers from this is - do try to get antiviral medication like aciclovir as it will minimise the frequency of outbreaks, try the coldsore patches from the chemist (Compeed is the brand I use) - they can be costly but keep the area clean and covered to prevent spreading and definitely seem to clear it up more quickly and with less scarring and, finally, try not to touch the area at all outside of treating it. I have become good at recognising the early sysmptoms and the earlier I act on it, the less troublesome it is. I have also made a connection with using sunbeds as a couple of outbreaks have occurred shortly after using one so minimise UV exposure of the area (not usually a problem when it's on your bottom!). Hope this helps.

35 likes, 501 replies

501 Replies

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  • tim46959
    tim46959 Guest

    Posted

    Hi I am suffering of shingle for one week now and im not sure what sort of food should i not taken. Should i ate egg,milk etc. thanks
  • viki02823
    viki02823 Guest

    Posted

    On valentines day 2015, it will be one year since my nightmare with recurrent (persistant?) shingles began. I am getting it in a variety of  new places, but probably don't meet the official diagnosis of "disseminated shingles". the worst is its affecting cranial nerves, making me dizzy. 

    A quick question- was curious why those who keep getting it back don't take valcyclovir or acylovir with each recurrence? For me, these work quite well BUT i can't take it because it destroys my gut!  Gives me epigastric pain and early satiety- very hard to heal from as well. I thought at first it was because the meds were going down my gut, but i was experimenting with non-oral forms of the antivirals and i still got the gut pain. 

    but i havent heard of anyone else with this sideffect. So if you don't get this, how come don't take it with a flareup? does it cause other problematic side effects for you? or maybe does not work any more or at all?

    thanks.    

  • Surferrobin1
    Surferrobin1 Guest

    Posted

    ukulele girl did a nice job of good and bad foods..thanks!!!!  and since my posts about lysine, b 12 and mushroom complex helping, i had another flare up two weeks ago and I started right in on popping the supplements and it turned itself around in one day!  I could actually see it waning and by day three was almost without symptoms.  I learned this by googling around the net and can't find the original post or forum to thank the guy.  Mine recurs but stays in the same place on the left butt cheek!!!  I have never even tried the rx meds.  The one bout where it went into the nerves of the left leg has not re occurred but that time I took fiorecet which I have for migraines.  I try to eat the right foods but drink way too much coffee and try to balance it out with the good foods...ie low arginine...also, i seem better since starting to drink kombucha but dont know if this is coincidence
  • w21044
    w21044 Guest

    Posted

    I started to get a recurring patch of shingles on my right buttock about four years ago. It took awhile to be properly diagnosed. It got to the point where I would get it every month before my period. I have a lot of stress and I overwork. The thing that worked for me was to take nightly supplements of L-Lysine 500mg. I take 2-4 a night and 10 if I feel the tingling starting. I was able to stop it for ten months but then I really overdid it with work and stress and it came back. You want to make sure that you aren't eating foods that are high in Arginine. Lysine and Arginine are amino acids in foods but Arginine will encourage an outbreak. I foolishly was consuming large bottles of V8 for a couple weeks, forgetting about the high content of Arginine in tomatoes and that's when I broke my ten month record of not having a rash. You can't cut out Arginine because it's in so many foods - the best way is to take the L-Lysine supplement. It's natural and it has worked wonders for me. Before I discovered this I had to be really careful about using a heat pad, a TENS machine, or lying on my right buttock in bed and causing too much heat because that would give me the rash. I buy the large bottle of 'now' brand L-Lysine because it is effective and a good price. If this helps you please spread the word!
  • jayneejay
    jayneejay Guest

    Posted

    Hello

    I too get shingles this is my third time in 6 months ..

    Few spots on butt check, same place each time.

    Resppeared last night 😥

    I am age 50 .

    First time i ignored it ( felt off colour) but ignored it , i seem to get this every 2 months.

    Jay x

  • viki02823
    viki02823 Guest

    Posted

    I just recently found out that what i thought was recurrent shingles- first got it on Valentines day last year - is actually herpes simplex 1! The way I found out was that I had a viral screen run on blood for DNA and herpes simplex 1 turned up, but no zoster. also my real time pcr for zoster was negative.

    I was very surprised by this. Even though recurrent shingles is rare, the eruption looked and felt like shingles, not herpes. I had two sites, the most visible one was on my chest. I had the pox along nerve distribution, though not as extended or bad as some people get. plus had pain in that entire nerve. (I also had a couple of pox on nose, and forehead, and above eyebrow and the worst was it gave me dizziness and vertigo and i supsected some form of ramsey hunt even though i did not have a drooping face muscle).

    So am pretty puzzled. so much fit zoster and not simplex. But Since this is a zoster forum not a simplex forum i'll save the puzzling aspects for that forum, but wanted to mention here my surprise at the outcome.

    • jayneejay
      jayneejay viki02823

      Posted

      Hi viki

      Thanks for sharing.

      Mine is a cluster of blisters on butt cheek, feel really poorly week - 10 days before blisters then a burning deep pain in butt cheek - cant touch skin its to painful, achy, then a cluster of raised lumps that are hot and blister.

      The pain is awful in that area.

      Deep deep burning ..

      If you take aciclovir tablets within 72 hours of the blisters appearing it reduces the virus ..

      I took it in time and not been as bad

      This time around ...

      I had 3 bulging spinal disks when mine occurred, and its near that, seems we all have shingles laying dormant in our nerve roots after chicken pox, and then something may trigger it, injury, illness, stress.

      I am also having very severe post menopause symptoms and doc thinks it could be abit of both ..

      As i cant take hrt and had a ten year peri menopause and now 20 months post meno age 50 .. Hes suggested an HRT alternative to calm body of the 20+ severe hot flushes i get daily with palpitations, anxiety, Its a low dose Escitalopram and already its showing ease of symptoms 😃 ..

      I was offered this 18 months ago and refused, wish i hadnt, as so far so good already .

      Jay x

  • viki02823
    viki02823 Guest

    Posted

    p.s. to my message. I shoujld add I posted on this forum 3 months ago with what i thought was the recurrent shingles.
  • ClemoM8
    ClemoM8 Guest

    Posted

    Hi guys and girls im a 15 year old from australia and i have been suffering with recurring shingles for 11 years and have been getting it every 3 months and some times its thinned down to 1-2 months for the past 7 years and i get ot on my ear my eye and lately a few different places such as my neck and color bone area can someone please explain because i get a sharp pains from the area on my ear and it feels like someone is stabbing a knife in to my head and i can feel it go all the way into my skull and its excruciating pain and with my eye it feels like when i blink its feels like sand paper rubbing on my eye can i get an explanation please ? smile
  • 1Constantoutbre
    1Constantoutbre Guest

    Posted

    I suffer as you do, with a reoccurring outbreak at the base of spine.  Fortunately Accylovir (2 400 MG taken orally each day) works and I no longer get outbreaks unless I am suffering from severe stress or very sick with fever  Or at least it has for the past decade or so.
    • jayneejay
      jayneejay 1Constantoutbre

      Posted

      Hi 

      i have had 4 outbreaks since Jan this year.

      i had one beginning of May took like you aciclivor beginning of May ( first time i taken it ) then low and behold i had another worse outbreak end of May and a few days later it got bigger and fresh blisters with the usual deep burning pain before the outbreak.

      still pain on the site of the rash ( always on my buttock) 

      now i am using just the aciclovir cream this time 

      jay x 

  • kevin-Canada
    kevin-Canada Guest

    Posted

    I too have my experience with recurring shingles. I am glad I read this thread as I thought it was only me with recurring shingles and something is very wrong with my immune system like a hidden cancer or HIV or something (my blood count is normal though) but I can see that many people some with healthy immune system also have episodes of recurring shingles.

    I have had shingles on an small area of my left hand palm 4 times past 5 months. My last episode started 3 days ago with usual symptoms of pain in my left arm, skin sensitivity of my left arm, left wrist and left hand fingures, tingling and later a cluster of small white blisters on a usuall small area later they are going to join up and form larger single blisters and then turn red a week later and fall off the week after. They are painful but not much and the area is small about half an inch.

    I thought I share my experience too. I have no reason for a weak immune system. My lymphocite count was at 2730 and no STD infection. You are not alone

    • jayneejay
      jayneejay kevin-Canada

      Posted

      Hi Kevin 

      i had my last outbreak beginning of June gone..

      since i had my vit D levels checked and B12 ..

      i was vit D deficient even though i live in sunny country.. So taking 2200iu daily ..

      Also i have Vit B12 injection weekly as this helps shingles.

      my doctor gave me B12 and B1 and anti inflam during outbreaks too 

      now i havent had another outbreak ( fingers crossed) 

      good luck its a nusiance when it starts 

      jay 

    • kevin-Canada
      kevin-Canada jayneejay

      Posted

      Hi Jay. Thanks for sharing your experience. I have been on Vitamin D (1000iu) and B complex past 5 weeks but my shingles return 4th time beginning of August. I hear that Lysine may do good too. I was on Lysine for a few weeks and then I stopped last week, a week before my 4th round shingles started. So the jury is still out on Lysine. I wish I had not discontinued Lysine. I also take Omega 3, multi vitamins one-a-day and calcium as well.
    • jayneejay
      jayneejay kevin-Canada

      Posted

      Hi Kevin 

      oh isnt it miserble this shingles keep coming back ..

      i always got mine on my butt cheek .. but been fine since last bout beginning of June ( fingers crossed) mind you i did have 3 bulging back discs in Feb and it was near that injury .. 

      Be careful with omega 3 being a male .. 

      We read and heard alot of bad things about that for men ..

      (Men should be wary of taking omega-3 fatty acid supplements now that new research from the National Cancer Institute links them to an increased risk of prostate cancer.) 

      i also take a mega B 100 complex ( 100mg B6 and B1 etc)  B1 handy for me as keeps the mozzys off me they hate B1 😊 also have my B12 injection weekly as well .. 

      good luck with the shingles remedy hope all calms for you soon

      jay 

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