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Sharing my experience - recurring shingles

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Guest

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.

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  • megster
    megster Guest

    Posted

    Is anyone still posting on this forum?

    I am dealing with PHN after a bout of shingles on shoulder and neck in March. The rash was bad, but excruciating was the nerve pain the migrated to my TEETH. I've never heard of that. My poor dentist saw me so many times trying to find out why my whole mouth was in such agony. I even had a root canal.....

    Now, after a stressful week of medical appointments for other chronic issues, my upper teeth area has begun to throb again. This is such bad news. 

    I'm assuming it's stress related. I also noticed it begin while I was swimming laps (I used to swim a mile a day before shingles, and was just starting back, a milder goal, but now I'm wondering if ''too much'' exercise contributes to PHN. HELP!

    • Jazz6034
      Jazz6034 megster

      Posted

      Ooh, that sounds awful, I've had it in my mouth before but mainly it comes out on my arm. Usually when I'm really stressed or working too much. If you can take acyclovir I'd take it. X
    • megster
      megster Jazz6034

      Posted

      thank you, Jazz. yes, when my doc opens tomorrow noon, I'm going to give him a call and hopefully get back on the antiviral. I am not a happy camper.....

      I just read that stress weakens the immune system which contributes to shingles that way. I already have a compromised immune system with psoriatic arthritis and its accompanying immune-suppressing medication. sigh.

  • lulu04882
    lulu04882 Guest

    Posted

    So glad I found this site! I am a 40 yr old healthy female with shingles affecting the pelvic (genital, buttock) area.   It was originally diagnosed as Genital Herpes but all antibody tests for HSV have been negative and I was not sexually active at the time, so they switched the diagnosis to shingles.  I had severe post-herpetic neuralgia with back and leg/foot pain.   Now I am having another outbreak only a few months later.  The blisters respond to Valtrex pretty quickly but the nerve pain is terrible.  I have no known immunocompromise so I can't figure out why this is happening.  I have noticed that I have a very high arginine diet (oats and nuts every morning) and I am wondering if this could be the cause.  Because the shingles are affecting the sacral nerve roots, it also affects bladder and bowel nerves.  I am posting here so that other women who have perhaps been misdiagnosed with HSV can see that shingles can indeed affect the genitals.  I had not had sex in a year when I had my first shingles outbreak, yet my doctor told me it was genital herpes as soon as he saw it.   Glad I paid for the antibody tests.  Still baffled about why I am getting shingles so young though.
    • llp02
      llp02 lulu04882

      Posted

      I have been reading a lot about something called a "leaky gut" and believe this may be my problem, but I have not yet followed through with a diet change. I would suggest you do some research on it. Basically toxins in our food and just certain foods themselves cause our digestive system to quit working correctly and in turn our bodies start to attack themselves. This throws our immune systems out of wack.

      It's worth a look and it may not have anything to do with your situation.  :-)

    • J4n3
      J4n3 lulu04882

      Posted

      Hi Lulu, I'm 58, slim, healthy, fit - and into week 8 of shingles! No rash but horrendous enduring nerve pain over my whole left flank. You are the first person I have seen on any forum (there is a good one on FaceBook too), who has mentioned the difficulty with bowel and bladder.  Please let me know how you have got on over the last year! I am hopefully seeing a London pain specialist in a few weeks ;-/ Going crazy with this! I do hope you are much better!
    • cometboy5
      cometboy5 J4n3

      Posted

      HI, i am from Australia and have only had shingles in the last few weeks but am now suffering from stomach pains, wanting to urinate a lot and constipation. Is this similar to your suffering. I did read that shingles can affect your urinary tract etc.
  • cornmari
    cornmari Guest

    Posted

    Hi All,

    it is great to know that there are others who have reoccurring shingles. I am currently having shingles or to be more precise it just finished but the nerve pain stayed. I usually get it in my face - chin, eye or ear and it is clearly linked to stress in my case. My main problem is that a nasty nerve pain follows all down my jaws which can last for 2-4 weeks. Sometimes I only get this pain and for me it is the bigger issue. My shingles is not as common as in other cases I have read about but I do get it every 1-2 years. It used to be more frequent but I have tried to eliminate stress. I live in a place I like, found a great job etc. But small episodes of stress which still happen can still trigger this. I found one doctor who had shingles himself which was useful as he understood me. But I had to go back for some more Gabapentin and a different doctor was there who gave me the "this is uncommon and should not happen to you unless you are unhealthy" talk as I am too young for this (37). Well, I have had so many checks and I am usually healthy appart from this and an occassional cold... So it is good to read that others have reoccurring shingles too - but believe me, I wish no one of us had this! 

    I think I could cope with this fine but I do work in remote places for long times away from any medical help. I need different meds to cope with shingles and the nerve pain and I need to carry letters from doctors with me so that I can travel with the meds. It is not helping if doctors are unaware of our condition and I am surprised on how few know about this. I get sent to different doctors every time and I have moved around a lot. 

    But just reading your posts confirmed I am 'normal' and not alone. And I also got my letters! 

    Thanks

    Cornmari smile

  • Yulos
    Yulos Guest

    Posted

    I am 47 year old female and have had reoccuring shingles for over 20 years with outbreaks occurring more frequently as the years went by. At the worst, I had outbreaks as often as twice a month. It was getting very depressing. Then just 2 years ago I stopped eating some meats which included beef, pork and chicken and found that it seemed to stop the outbreaks. I was feeling much better overall as well for a while but since I am an endurance athlete (doing 50km to 100km races at least 2 times a year), I felt I really needed to get some animal protein. I slowly added beef and pork back to my diet but have kept off the chicken. I have not had any outbreaks since. It has been just a huge relief for me and I have no idea if it is a total coincidence but it seems to have worked for me. I have researched a bit and read about how horrendous the quality of the factory farmed poultry and how it can affect our immune system. Please check out: 

    http://www.peta.org/issues/animals-used-for-food/factory-farming/chickens/chicken-industry/

    This is something that seemed to have a profound difference to my personal situation and it could be completelly coincidental because there are so many other factors such as age, hormones, changes , etc, that I am going through but I thought I should share this information in case it can help anyone else suffing out there.  Good luck!

  • ambient
    ambient Guest

    Posted

    I have HSV on my left buttock only...I presume that's the same as shingles? I take 70mg of aspirin daily...I haven't had any lesions since : )
  • llp02
    llp02 Guest

    Posted

    Hello from Montana U.S., I am a 26 Year old and my first outbreak happened 3 years ago, I broke out on my right shin and my left hip. I had no idea what it was so after about 5 days I went to the clinic and they told me I had probably got bitten by a spider and it got infected. They gave me some antibiotics and sent me on my way it cleared up and I didn't think much of it.  About 6 months later I broke out in in the exact same places I knew something was up, I went back to the doctor (different one since I was living in a different town). She immediately diagnosed me with shingles. I broke out about every three months after that until about a year ago it started to happen once a month.  My doc has done all the blood tests several times to see if there is anything up with my immune system,  but my levels always come back perfect.

    About 4 months ago I began taking acyclovir twice daily.  I forgot what it felt like to not be sick until the other day I broke out with the worst breakout I have had in a long time. 

    I have noticed that I break out right around my menstruation. Has anyone else had this experience? 

    • AmJane
      AmJane llp02

      Posted

      Did your blood test show positive for herpes zoster? I have had several break-outs on my lower back (painful, burning, itchy) and have always been treated for shingles, but my blood tests came back negative for herpes (zoster or 2) but my skin culture came back positive for herpes 2. Apparently my body has not built up the antibodies to show in my blood test. I have never had any sort of herpes breakout anywhere so was very confused. My doc also checked me for problems with my immune system and luckily those were normal also.

      My first breakout happened 2 days prior to my wedding and I thought at first was a bug bite, but my mom thought it looked like shingles. Went to urgent care and he said it looked like shingles. 

      I have had several more breakouts over the past 2 years in the same spot and when I feel worn down, been in the sun more than usual, working out or around my menstruation they seem to pop up, maybe due to my body temp?? Not sure. After more research, my doctor believes that I have herpes gladiatorum and has started suppressive treatment (acyclovir 3 times a day) and I haven't had a breakout in over 2 months which is a record for me! Because shingles in the same spots are very rare (esp since you are younger like me) you might want to research herpes gadiatorum - I may have contracted from the gym? Still not sure.

      Good luck!!  

    • llp02
      llp02 AmJane

      Posted

      I have liked into the herpes gladiatorum, I just can't think of anywhere I could have possibly caught it.

      I have been on suppressive treatments for about 5 months and everything was going great until I broke out a couple of weeks ago in spite of the treatments.

      I will definitely bring it up too my doctor! Thanks! 

    • AmJane
      AmJane llp02

      Posted

      Yeah I know what you mean - I was wondering the same thing but I was going to the gym a lot and even went to a tanning bed prior to my wedding (I would never tan indoors otherwise) so not sure if I could have picked up there? Or yoga? Still a bit of a mystery. Going to keep up with my meds and hope for the best. Find it odd that after 2 years my bloodwork still does not show any antibodies to this. Very frustrating.

      Hope you get better soon! 

    • scott83219
      scott83219 llp02

      Posted

      Have you had any more outbreaks while on the suppressive medication?   I'm about to start daily suppressive medication 
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