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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

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  • summer47773
    summer47773 Guest

    Posted

    I have a question for those of you with recurring shingles. I am a week into my first shingles (as of seeing blisters) they are on my RIB CAGE/WAIST . The blisters have started to heal and have small scabs on them . Last night I started tingling and itching on my BACK which is still tingling itching. Is it possible to start an entire new cluster of shingles 7 days after a previous cluster started? I've been taking Aclovir for 5 days 3x a day so far . Help please... sad
  • gusballantyne
    gusballantyne Guest

    Posted

    Hello,

    Had chickenpox aged 21, no related symptoms or flare ups since until February this year when I woke up one day to find left side of my face covered in small pimples and raised areas which had the texture of all I can describe as "toad skin". Went to Gp who sent me straight away to A&E. Turns out the shingles had attached itself to the optic/nasal nerve. Face swelled up like the phantom of the Opera and eventually I lost 2% of my vision.

    Eventually cleared then out of nowhere it flared up at the Base if my back four days ago.

    Trying to explain to people about the symptoms is hard enough but when they think that you're kiss trying to be lazy is infuriating.

    I had a recurring issues with abscesses a fee years back could this be an offshoot of that?

  • Blom
    Blom Guest

    Posted

    I am 32 and also get it between 3 and 7 times a year also sometimes back to back. It's enough to make me crack at times. I now have it and am breastfeeding my three month old. So scared he gets chickenpox.

    Doctors have criticised me and told me that you can not get it more once. Yet I do. Over and over and over and over.

    I hate it. I get it on my foot after having septicaemia about 4 years ago on exactly same spot. Every time on the same place. My foot is so badly scarred and the pain is unbearable.

    • janbi
      janbi Blom

      Posted

      Blom: You are not crazy. Sure you can get it more than once. I think that is now a widely-accepted idea. I wonder why there isn't more of a consensus about the various facts concerning shingles. Not a mystery disease, after all, and it's been around for a long time.
  • jane97743
    jane97743 Guest

    Posted

    I'm so sorry for you, I know how painful it is, as i am in my 5th week after complications of re-infection and now awfu neuralgia andf my

    head one side is so sensitive to the touch, I can't do without constantly  taking pills for the pain! I had the woerst type the forehead and eye! Luckily my sight seems to be ok, but it  was weeks before it stopped watering badly, especially in the morning. I really hope you will be well soon, have you thought about asking for a vaccination?

  • bridget_22798
    bridget_22798 Guest

    Posted

    Ladies thank you all so much!!!! I have learned so much from ya'll!!!! I have had shingles three times this year and I feel like I'm loosing my mind! But ya'll have helped so much sharing your stories. I just got a flare up again today. I was also told 2 stay away from sugar and white flour. Thanks again for all your input.
  • Jodiejo40
    Jodiejo40 Guest

    Posted

    I am now 40 years old I have had shingles on my left lower lip around Christmas now the left side of my face feels like numb /tingly again and the same spot on my lower lip feels like needles going through it. Same feeling I had before so I'm thinking I'm starting in on shingles again ugh
  • paddi60529
    paddi60529 Guest

    Posted

    these are notes i found from december 2015

    hope it helps

    i'm now going through a divorce and have been shingle free since we separated in january 2016

    Shucks I just wrote a long post and it disappeared right before my very eyes. Must be magic. Here goes again. I'm a young senior, fit with no serioius health issues. Had blisters come on my right side below waistline for four years. Didn't know what it was and did not go to doctor. Thought it was spider bites, as I'm a gardener and outdoors a great deal of time. Second year I plain forgot once it began clearning. Third year was cursing those spiders, then fourth year knew something was up. Got diagnosed with shingles but strange enough had the shingles vaccination. Doctor said the vaccination prevented the outbreak from being too terrible. A little ray of sunshine yes? Went through the neurontin phase which i quit taking, would prefer a margharita for same effect ya know. the prednisone I was allergic to, so long story short I will just deal with it. Treat myself easy and rest more. I can get very tense. Have changed my diet to the 'blood type diet'. Also had three seizures in between these shingles outbreaks the past six months. So I can't drive and riding with hubby makes me want to scream out loud, but that's a whole diff story. We know to keep the area clean and don't pick. Doc said to cover the area with gauze  in case of oozing. It's a comfort knowing this group is out there. Wonder is bathing with epsom salts would be any benefit. Will follow up with some new ideas in time. Stay happy and positive in the meanwhile.

  • barb80304
    barb80304 Guest

    Posted

    Thanks for sharing. I too have been diagnosed with shingles on my thigh. This is apparently very in usual spot. Does the shingles move some times for your life to your right leg? Or is it always the same leg !
    • Shoe_Lady
      Shoe_Lady barb80304

      Posted

      People will tell you that It can't appear on the opposite side, but I experienced the same exact pain and symptoms on the left side of my back as I did on the right the year before. I believe from everything I am reading that sgingles has a kind of its own and the docs do not know what to say about it. 10yrs from now they are going to have many different things to say about this disease.
    • Azbella
      Azbella Shoe_Lady

      Posted

      Yep , they're not up to date on a lot of things ..,🙃
    • janbi
      janbi Shoe_Lady

      Posted

      I have a friend who, whenever we talk about shingles assures me that it's impossible to have it on one side of your body, and then have a later outbreak somewhere on the other side. A neurologist told her that, so naturally she thinks it has more validity than a diagnosis by a dermatologist. I don't know what to think. What I do know is that different medical personnel have called what I had on the right side of my head, which was the first outbreak I had, and the one that has plagued me several times since then, although not as badly, since I have had the vaccine, all shingles.  And they sure felt like it, no matter what side of my body they were on. So I think you are right, Michelle, and years from now they will be saying different things from what they say now. They are already saying one thing that they didn't say at the time of my first, and worst, experience of it: That it is possible to have shingles with little or no rash.
  • bethany57692
    bethany57692 Guest

    Posted

    I am only 21 and I am currently having my 10th outbreak. So far this year, I've already had 3 outbreaks and its only June! My shingles come from stress. It's really a struggle for me because I get my shingles right above my left eye. I hate taking the acyclovair my dr prescribes because it always makes my stomach upset, and with the amount of outbreaks I get, I feel like I'm probably destroying my immune system by being on antiviral medication so often. For me, using lanacane and calamine lotion really helps relieve the itching I get, and since calamine lotion is an astringent, it also helps to keep the sores from oozing, which is important for me because i get them on my face.

    I hope they find out why we keep getting this horrible virus! And I also hope a vaccine bevomes available for someone my age. I am really glad there is a forum like this, because it's really debilitating and no one in my family understands how terrible it really is for me.

    The funny thing is, I get shingles from being too stressed out,but having painful oozy blisters on my face really stresses me out!!!

  • leslie137
    leslie137 Guest

    Posted

    First off-- I'm so glad I found this thread! 

    I'm a 28 year old healthy female, and have been getting shingles ourbreaks since I was 18. It first happened when I was in college. It started on my eyelid (always the right half of my face) and it was misdiagnosed as a staph infection, so it continued to spead down my face since I wore sunglasses all day to hide it. It was horrible. sad After a few weeks it healed but left me with some scars, for sure. A couple months later I had a small outbreak again. Since then, my doctor has just had me on Acyclovir every day, 2x a day. If I forget to take it I will usually have another outbreak. It's always on my face. sad As you all know, it's no fun. It's even worse because I'm a teacher and always worry about being around kids. It's so difficult to explain to people, too...since it's not "normal" shingles, and the stigma that's attached to herpes and these types of outbreaks. 

    Anyways, I've always worried about the fact that I've been taking Acyclovir daily for almost 10 years now. I've asked my doctor about it and if it's no good for me, and he just kind of shrugs and says "just keep taking it", so I do. Just a few days ago, (first day of summer vacation!) I get another outbreak above my lip. I'm surprised because I've been taking my medicine regularly, didn't miss a dose. I treat it with an extra dose of Acyclovir per day as well as Zoviraz cream directly applied to the sore. That sore has crusted over, and just yesterday I notice another one forming above my eye. THEN this morning, I wake up and can feel the tingling of a new one forming on my cheek. sad I'm at a loss of what to do. I've been on and off the phone all day trying to get a hold of my doctor. I don't know what it's like for ya'll, but in the States it takes months to get in to see your doctor. I'm just waiting for a call-back now that I finally got through to a receptionist. 

    I've often wondered about the vaccine I keep seeing ads for. I know it's for "normal" shingles, but I wonder if anyone has gotten it for the recurring shingles. 

    Anyways, good to know I'm not the only one. It sure is frustrating. I realize it's brought on by stress, but how can you not be stressed out when there are nasty oozing itching burning sores on your face? sad 

    • jane97743
      jane97743 leslie137

      Posted

      I'm sorry you have had such a lot of trouble with shingles, didn't you go to see an eye specialist when it was by your eye?? I have been many times as it can mean loss of vision, but my eye has  no scarring and seems to be ok, It was 9 weeks ago that I was diagnosed and I had the complication of neuralgia which i still have, and terrible itching on my head, forehead and eyelid, I am improving each week but now I have started to get occasional double vision about twice a day, that lasts for seconds. Shingles is so painful especially at the beginning and i wish you good luck and hope you don't get it afgain,
    • bethany57692
      bethany57692 leslie137

      Posted

      I just spoke to my pharmacist today about two of the questions you asked! First, I asked about the long term effects of taking acyclovair for extended periods of time. He said not to worry about it hurting your immune system any. Also, he said that on the pharmacy level, someone in our age range can't get the vaccination. However, if a Dr thinks it's appropriate you can get it!!!

      You do have to be sore-free for 6 months before you can get vaccinated though.

      Best of luck!

      P.S. Try a cold water compress 15 minutes a day to help relieve some of the pain and itching. It also helps get the crusties off.

    • Shoe_Lady
      Shoe_Lady leslie137

      Posted

      My mother in law has been taking acyclovor 1x day for 30 years. She is a very health 78 and going strong!! She keeps telling me to do take it every day, but I have the same worries as you. I have been trying to do holistic methods of boosting my immune system and I do not want to interfere with that. However, I did start taking preventative acyclovor about a month ago because I was beginning to feel an outbreak arising. There is a new vaccine coming out 2017. 97% efficacy compared to the 53% with the current vaccine. Hopefully it can help those of us already infected. Take care
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