1. Community
  2. Infections
  3. Shingles

Sharing my experience - recurring shingles

Posted , 285 users are following.

Guest
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.

35 likes, 501 replies

501 Replies

Prev Next
  • help_at_hand
    help_at_hand

    Posted

    Sorry for the spelling mistakes in the earlier post.

    I forgot to add that, when the blisters weep, and they will do so, it is important to not share anything that comes into contact with the infected area. i.e a bath towel. When I use the toilet, I clean the seat with some diluted dettol. Just so as not to help spread the infection. Common sense really.

  • Jade_girl
    Jade_girl

    Posted

    Hi!

    I'm a 23 year old female. Healthy, active with no medical history to speak of. This morning I woke up with my second bout of shingles, 5 months after my first one and 15 years after my chicken pox outbreak as a child! I am frustrated by all the information available on the net discussing shingles as something that affects people over 50 and with low immunity. I have no immune issues to speak of and since stopping medical contraception, have barely had a cold or illness!

    My shingles are not severe and I will be starting on my antivirals shortly but this is clearly a healthy woman's disease! Not a sick old persons! Everything tells me reoccurring shingles is rare but all of these forums suggest otherwise. I finished menstruating a week ago (whether or not this is related I don't know) but I truly hope this is not something I will be continuing to fight my whoe life!!!!

    I'm off to the chemist to get some L Lysine (which helps with immunity & cold sores) and some healthy food but fingers crossed this is my last outbreak!!!! But it's nice to know that others have this reoccurrence because reading that "no one has more than 2 outbreaks" is a bit worrying!!!!!

    • adrianab
      adrianab Jade_girl

      Posted

      I agree I was young and healthy when I was first diagnosed. I get it everytime I over stress but not nearly as painful as some describe. I take suppments Lysine being one and b12 sublingual and am able to combat the pain and maintain it from getting worse.

       

    • renee1960
      renee1960 Jade_girl

      Posted

      when i was still have my cycle mine reoccurred more often just letting you no...i use valtre and did not get them wet...
  • cheriya
    cheriya

    Posted

    I am 41 years old and had my first experience with Shingles. I was actually quite shocked when I went to the doctor thinking that the rash was some kind of mite rash lol. I did experience muscle like pain in my back but thought it was from lifting weights. so I did not think anything of it until it started to wonder why the burning muscle feel was right about the same spot as the rash. Im curious as hell as to why I got shingles, Im very healthy, jog almost every evening, been taking liquid greens every morning and eat a lot of fruits. So it comes down to 2 things, I got shingles a week before my Period and I did use a tanning bed 2 weeks prior. Now I have used tanning beds last year but no outbreak of any kind. But I did notice with this other tanning salon i went to, I seemed to come out red as if their bulbs are too strong somewhat. This was my 3rd tanning at this place. I have read that anyone that had experienced chickenpox as a child will have the virus lay doormat in the body and may or never come out as "shingles". Now the doctor told me that I most likely will not experience shingles for another 30 years! Well i must say im quite shocked what ive been reading here that people have been experiencing recurring shingles! I did more reading about the causes and the only ones i see are weak immune system . and than it goes on to say " in most cases we really dont know why shingles comes out of doormat". So i guess the only thing to do now is to make my immune system even more stronger! which im sure already is so I thought, since im perfectly healthy , all blood tests came back from da doc with no problems! No one in my family has ever experienced Shingles but i guess they dont have to for you to have it lol. Decided to take a spoon of Manuka Honey every nite which by the way is good for anti-bacterial and start taking Moducare to support my Immune system. I guess it clearly is a healthy woman's disease as i read in the previous thread!
    • victoria65156
      victoria65156 cheriya

      Posted

      Cherya, yours is not the 1st post that says that your shingles is brought on by tanning beds.  In Australia, we have finally banned tanning beds because they have led to terminal cancer, starting with sking cancer and then spreading through the body.  I recommend that spray tan is the safest way to get the skin colour you're after; so far there is no evidence that there is anything in spray tan chemicals that can cause problems.  Please consider this, I stay out of direct sunlightbecause I am descended from Highland Scots and my father and his mother both had to have cancers removed and biopsied,  Dad lost an ear lobe and part of his botton lip.
  • Margamac
    Margamac

    Posted

    A 67 year-old, fit and trim female, I became aware about 6 mos ago of minor recurring shingles tingles on my right side at waist. Yesterday we hosted a brunch for 40 neighbors. Since evening I have an angrier patch on the base of my spine. This Sunday morning I have no way to know whether it will fade or fire up. Might it make sense to start on the ten Vacyclovia I have been holding just in case of emergency need? If I start it does anyone have experience just taking one, or maybe just one more tomorrow if that seems to do the job?
  • katia1
    katia1

    Posted

    Hi I am a 36 year old female and have suffered from recurring shingles since I was a child aged 8. I always seem to have a break out when i'm run down or stressed. It seems to be getting more painful just before the rash comes out. This time I am in agony my whole neck and shoulders are really stiff and really painful andthe rash is just starting to come out. I went to the dr's with my last outbreak 8 weeks ago only to be told that I couldnt have shingles because there was no rash and the doc said I couldnt have shingles more than once!!! I wasn't very happy because I knew exactly what it was because of the pain, the same burning and agonising pain. I dont usually go to the drs I just take pain killers and try to get on with it as much as I can but had to go last time because a woman in work was in early stages of pregnancy and I was worried I may of been putting her unborn baby at risk. After much discussion with the dr trying to explain that I knew what it was because of the pain in the same place he eventually gave me anti viral tablets. I dont always come out in the rash but get the nerve pain, does this happen to anyone else???
    • ukulele_girl
      ukulele_girl katia1

      Posted

      Hi Katia, I am 61 and have suffered with shingles since my 20's. And yes sometimes I just get the pain without the rash. After having the shingles vaccine 3 month's ago I now have shingles again. But 3 month's was a long time for me to go without having them! This time the rash is no bigger than normal, but I feel so weak, have no energy and no appetite at all, also feel sick. I am not normally this bad, I have decided to change my diet, have cut out chocolate caffine nuts and other things that are high in Arginine, and I am eating (or trying to) foods that are high in Lysine i.e. cheese milk fish red meat eggsspinach and other things as well. Hope this will help me.I cannot take the meds from the Doctor as they make me sick. Hope you get better soon. xx
    • Shoe_Lady
      Shoe_Lady katia1

      Posted

      That is exactly what happens to me. I, thankfully, have a mother-in-law who has a dr that will give her as much acyclovir as she wants, so she gives some to me. The second time I started feeling the same pain I started the acyclovir right away and I did not get the rash. However, the internal pain continued and my dr gave me neurontin. She will not give me prophylactic acyclovir. She does not believe that will work. My mother-in-law said her dr has had her on one a day for 30 years. She ups it if she has increasing pain, which she says she has to do every couple years for about 3 days. Have you heard anything about getting the vaccine?
    • pamela93
      pamela93 Shoe_Lady

      Posted

      Michelle, I have been wanting to ask for a long time about the dose of acyclovir your mother-in-law takes every day, as I would like to try that as a last resort.  My dr has reluctantly agreed to prescribe it although he is doubtful it will work.  I am clutching at straws as nothing I have tried so far has helped.  Unlike most sufferers, my PHN is actually a constant and relentless itching which drives me insane and, however hard I try to use will-power, I end up by clawing at my skin to try to get some relief, although I know I am causing even more damage and making it worse.  It is now over a year since I had my first attack of shingles so I am pessimistic about it ever leaving me in peace.  For the first few months I also had the terrible pain that so many of you are suffering from, like a severe burn or open flesh wound, and I used to think if I were given a choice and could be free of just one of the tortures, which one would be easier to live with. For some reason the pain has recently abated and given way almost entirely to the itching, but I now know that the two afflictions are just about equal in the way they impair one's ability to function like a normal human being.

      I need to give a word of caution here to all of you on this panel who are using the local anaesthetic Esracaine cream.  I used it for months on my back, as it seemed the only thing that helped at all with the itching, and I applied it twice or 3 times a day.  My dr was ok with it.  But then a skin specialist warned me that if too much was absorbed it could affect the heart. I straightaway stopped using it but her warning came too late and a few weeks later, out of the blue, I ended up in ER with a complete heart block.  The verdict: I was told I needed a heart pace-maker, which was implanted the next day.  It was a traumatic experience and has added another medical issue to cope with.  So I do hope that any of you who may be using Esracaine or allied products will check to ensure that they are not inadvertently risking their heart health.

      If only the medical profession would make more of an effort to study this dsease rather than relying on medical school cliches we sufferers would be so much better off.  My thoughts are with you all. Pamela

    • jane97743
      jane97743 pamela93

      Posted

      I am so sorry for you, what an awful time you've had,  and especially having the heart problems too! I was diagnosed 9 weeks ago with a bad case of shingles on my head, forehead and right eye. I have had so many trips to A and

       E at the beginning when I was in such awful pain, and to the eye clinic regularly, About 3 weeks ago i was told that I don't have to return as my eye is ok and luckily no scarring was found etc. However, i had the horrid complication of the neuralgia, and although it has calmed down a bit, I too have the most awful itching now mostly on my eyelid, and it drives me CRAZY so I just can't always leave it alone, and now my eye is pink and cloudy and sore!! I do have an appointment on Tuesday because I started to get occasional double vision lasting a few seconds, about twice a day, usually the first time being when I wake in the morning and also if I look at anything too closely  I thought it was the side effect of pregabalin but I stopped taking them and it made no difference!, I am really hoping that this latest problem will go away once the nerves and muscles settle down, I agree with you that is it life changing and it never seems to end!! I hope everything works out ok for you! Jane

    • renee1960
      renee1960 pamela93

      Posted

      i feel so sorry for youhave u ever thoought of changeing ur  diet and going to a alternative doc holistic doc  ...
    • Shoe_Lady
      Shoe_Lady katia1

      Posted

      Me! Sounds exactly like me. I get exhausted, mild headache, neck and upper back pain, and irritable. Every now and then I will get a tiny blister behind my shoulder blade. The only time I got a rash was the first time, and that is because I didn't take any meds, because I had no idea why I was in so much pain! The Drs all said the same thing. "You are too young", "shingles does not come back". Yeah right!! They need to take some time and read this forum. Been noticing lately that my symptoms resurface around my menstral cycle. Not sure how, or if this could be related??? Take care
    • pamela93
      pamela93 jane97743

      Posted

      Jane,

      Thank you for your understanding message. I have been told that the shingles one gets on the face and the eye are the hardest to bear, with the added complication of risk to eyesight and scarring of the face, so I really feel for you and can imagine how the itching drives you crazy. And although we know that scratching may cause even more problems, we have such a desperate need to try to get some relief from the itching that all the sermons and will power in the world can't help. I do hope the eye clinic can recommend something to soothe your eyelid so that it can break that terrible cycle of itch-scratch and allow it to heal.  That what all our skin needs urgently.  Good that until now your vision in that eye wasn't damaged and I do hope that will still be the case today and that an improvement is on its way for you. Good wishes and good luck. Pamela 

    • pamela93
      pamela93 renee1960

      Posted

      Renee,

      Thank you for your suggestions.  I have made a few changes in my diet, having learned that things like chocolate, coffee and nuts and quite a lot of other foods can trigger and activate the virus. And I do take a lysine supplement from time to time though I am nervous about side effects if I take it frequently. I haven't tried a holistic doctor yet, but it sounds like a good idea since the conventional doctors seem so unhelpful and frankly not that interested.  If I do manage to find a solution I will certainly let you and every one on this forum know, so that it can possibly help someone else. All the best, Pamela

    • janbi
      janbi katia1

      Posted

      I am new here. Reading the various comments and thinking of my own experience, I am impressed by the fact that even some doctors seem not to have accurate knowledge about shingles.

      My first bout with shingles began when I was in my early 70s, with a sore area at the base of my skull on the right side, followed the next day by what felt like lightning strikes down through my skull on that side. I would have a slight warning feeling before the pain, and it happened frequently, but at irregular intervals. After a couple of days I became afraid that it was something to do with my brain or inner ear and went to our family doctor. He examined me, and so did the nurse practicioner; she said that if I had had more than a narrow strip of rash on my scalp, only about 3cm long and a few mm wide, it could be a "weird case of shingles," but, alas, the decision was that it couldn't be, but that my ear was OK, so I was sent home with no help. There followed 7 full weeks of pain (but no itching) that prevented me from sleeping on my back or right side, with only an occasional non-prescription pain killer to help. This initial bout appears to have been brought on by the extremely high doses of a proton pump inhibitor a doctor had prescribed for a bleeding ulcer. When I soon after that had my yearly checkup with a dermatologist, I told her about it all, and she had no doubt whatsoever that it had been shingles.

      I have since then gotten the vaccine Zostavax (in the U.S.). It has not prevented me from getting shingles again, but never as bad as the first time. When I began to have "the pains" on the left side of my back (like being stabbed, or sometimes as if a huge bug were taking bites out of me, and then itching began, I got an appointment to see a nurse because the family doctor (a new one, because my old one had retired) was too busy. The nurse recognized my trouble as shingles and prescribed acyclovir, which stopped it within a couple of days.

      However, since then, as the family doctor summarily dismissed a repetition of those symptoms on my back as post-herpetic neuralgia, I have not been able to get a prescription for medicine, except when I happen to get an appointment with my dermatologist (who is always booked up 2 to 4 months in advance) and have had to deal with several new bouts on my own. (I have stopped counting and don't pay much attention to how long the bouts last, just doing what I can  and carrying on with my busy life.) Applying oil of oregano (rubbing it in well until I felt warm, then pressing my back against a bank of pillows) helped, and after several days or a week or so, the itching and pain has usually gone away.

      But this time the itching is worse than it has ever been, with a large patch of rash. The itching sometimes feels unbearable, and I find myself tearing at the skin on my back. Perhaps it's a good thing I can't reach there too well! But I suppose I ought to be grateful that the original bout did not affect the area of my eyes and that subsequent bouts have all been in the same place on my back. I never realized people could have shingles on their thighs or buttocks or even fingers! How awful!

      The severity this time may be due to two things: my husband's worrisome ill health and the fact that I have been eating a lot of nuts. I am grateful for the information here about foods to avoid and will certainly take that advice. Thanks to all who mentioned those things. And to my fellow "unbearable itch" sufferers: you have my deep sympathy and best well-wishes.

    • jane97743
      jane97743 janbi

      Posted

      Hi Janbi,

      I was interested while reading your comments, as a similar thing happened to me re- the dr not diagnosing it in time! I had itching on my forehead ( this was 5 days after excruciating pain at the back of my head) I told her my forehead felt sore , itchy and was stinging and that my eye felt sore as if something was in it. i would have thought these symptoms would have made her realise it could have been shingles, but no, she just said to wash my eye with some eye wash!!! If someone else described those symptoms to me I would think of shingles straight away!! it was only when I noticed 2 red spots on my forehead that evening that I quessed what it was myself, after looking online! I saw a different dr the following day and straight away he knew it was shingles, and was concerned as I had a few tiny red marks close to my eye, I have had weeks of visiting the eye clinic and luckily I have lost no vision, but no thanks to the dr who should have told me to get an appointment! ( I did take aciclovir as soon as I had the rash) It is now 11 weeks since I was diagnosed and I have been left with double vision in the morning when I wake, and sometimes later in the day when I am tired, I still have terrible itching on my eyelid and forehead, and i now also have "dry eye" from all the trauma my eye has been through, but have been told that this will eventually clear, as my eye is now pink and sore, I use drops many times a day, but the more I rub my eye the more it itches, I was unlucky to get the complications including re-infection on my eye and forehead, and then once that cleared I had neuralgia, I no longer have pain in my head but it is still tender to touch, 

      I have never had anything so painful in my life and i have had 2 children!!

      I wish everyone on here good luck and I hope they don't suffer too much!

    • janbi
      janbi jane97743

      Posted

      Hi Jane, It seems incredible to me that health professionals would fail to recognize shingles, yet in my experience, that nurses seem to be quicker at recognizing it than some doctors. How fortunate that you didn't have any worse results from the shingles near your eye! I am sorry you have dry eye and the terrible itching. There is something special about the itching of shingles, I think; instead of feeling better when you scratch, it often begins to burn and hurt more, and/or the itching intensifies, and I suppose that when your eye is inflamed, it is more vulnerable to damage from scratching.

      This most recent time, I lay in bed a couple of nights feeling desperate because I couldn't get relief. At times I even had the feeling that the itch was inside me where no amount of scratching had any effect whatsoever. Finally, I pressed my back against a bank of pillows and began to try to trick my mind by just IMAGINING that I was giving the rash a thorough scratching without actually touching it, and after a while the itching subsided. It has been tormenting me off and on since then (with a few "free" hours this afternoon), but I think the episode is winding down...until the next time.

      Are you planning to get the vaccination against shingles? I do feel that it has probably prevented my subsequent bouts with the disease from being as terrible as the first one. At the same time, I am afraid that either the effects of the vaccine are wearing off, or that the nerve damage causing PHN is getting worse. Or it is worse just because I am getting older.

    • tiffany60896
      tiffany60896 ukulele_girl

      Posted

      Hi ukulele girl,

      I have my first case of shingles now. I have had it five weeks now and the rash is just beginning to heal. My pain has been very severe. I could not take the antiviral meds and I cannot take strong prescription pain meds.

      I notice that you wrote you could not take the meds from the doctor either. What do you do for the pain? The most frustration part for me is that doctors dismiss me when I tell them that I cannot take most drugs. 

      Like you, I have changed my diet to one high in Lysine and cut out all Arginine foods. Please let me know if you have any tips for how to deal with the pain of shingles without taking prescription drugs. I am a very stressed out person. 

    • PoshedOut
      PoshedOut Shoe_Lady

      Posted

      Hi Shoe Lady,

                                    I had shingles about a year ago and I also get what I call "flare up's" once a month around the time I am ovulating. Have you learned of any connection to this?

    • Shoe_Lady
      Shoe_Lady PoshedOut

      Posted

      Yes. During ovulation and menstration your body is using all its energy and resources to prepare you womb for fertilization and implantation. Therefore, the immune system is weak during these times, which allows the shingles virus or any active virus lurking in your body to attack!!! I have found that increasing my rest and increasing my supplements and clean foods has helped me a lot.  I have been cleansing twice a month. Once around the time of ovulation and then around the time of mestration. These are two of the hardest times to do a cleanse, but it usually helps keep the shingles at bay. I hope this helps❤
    • maria1974
      maria1974 Shoe_Lady

      Posted

      Hello all,

      I have returning shingles as well. But part of the problems and pain I suffer from is internal. Yes I'm tired headache etc. And always have the same spot on my back. But the pain in my spine and left leg is unbearable at the moment. I also have a fever when I have an outbreak and feel sick and no energy. Unfortunately I waited over 3 years to go to the doctor as I thought my herniated discs caused this pain. I'm now taking nervinex 125 mg and I'm on day 5 for a 7 day description. Do you have any links regarding what food to avoid etc. As I really need a relief from this. Thanks all in advance, Maria van Boxtel

Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.