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.

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  • Posted

    PNH treatment.. had this after getting shingles in June 2016. Tried lots of pills, creams over about 5 months. When I started some captuals of Loreze containing 10 gms of Loratadine & using a gel called Neotica Cool ( anti-inflammatory gel ) with each gram contain 5 mgs of Piroxicam I found that it gave me relief for 6-8 hours.. I currently live in Bangkok, Thailand and these products were easy to obtain..

    not sure if you can buy these products in your countries.. good luck & health to all the suffers of PNH

  • Posted

    I'm going to follow this discussion.  I had shingles 18 months ago, three weeks after having my baby sad

    It was so disappointing because it meant that I had to pump and dump for three weeks.  I had a particularly bad case (above my breast, under my arm, in my arm pit, and wrapping half way around my back) and unfortunately I could only take an antibiotic since I was nursing.

    I've found that when I'm stressed, I can still feel tingly pain (and clothes in that area can sometimes be painful!)  Right now I have a bad chest cold AND my in laws just left (they were here when the first shingles occurred!), so I was under a lot of stress.  It's more painful this time than usual - in all of the areas where I had the blisters.  I'm a nervous wreck...I don't want to have this again. 

    Is it likely?  Do you find that when you are sick, you can feel the symptoms again?  I'm trying not to stress out, but the possibility of having shingles again isn't helping!!!

    Give me peace of mind....

    Amy

    • Posted

      Hi Amy,

      I am no expert on shingles and PNH, but I got shingles in November 2016 so about five months ago. I had actual shingles for about five weeks, then at the end of December I got the bad nerve pain PNH. So, I've had the nerve pain four months or so. I know for me, stress brought on shingles and now stress makes my nerve pain worse, as well. My good days or nights, without too much pain, are always times when I have not been stressed and I am relaxed. For me, my pain is worse if I don't get a lot of sleep and/or I am undergoing a lot of stress and anxiety. If you do some research online, most medical sites state that nerve pain is made worse by stress and anxiety combined with lack of enough sleep. Hope this helps you. 

    • Posted

      To add, I don't think you are getting shingles again, but I do think you may be feeling some PNH type pain in the area where the shingles virus was.

      My shingles was just like yours--on my left side--upper, middle back, under my left arm and arm pit and over my left breast. There is so much that the medical profession does not know about shingles and PNH. I have come to the conclusion that every person is different in how their body reacts to shingles and nerve pain. For me, some days/nights my nerve pain feels almost gone, then some days/nights the pain is quite bad. You should try some over-the-counter remedies and try using ways to calm yourself before you resort to strong, pain meds. You may be able to cope with your nerve pain on your own if it happens only occasionally and you know what it is and that stress can aggravate post shingles nerve pain. 

  • Posted

    I am a 40 year old relatively fit and healthy mum who has suffered terrible coldsores on lip for 6 years, the doctors eventually gave me aciclovir for bad flair ups, within the last two years I have had what I thought was terrible thrush at the same time and only recently thought there was a connection. At the beginning of February I had a terrible flair up, lots of medication needed for the pain and a tremendous swelling in both lip and labia...doctors were unsure and said thrush! No examinations. Eventually went to a GUM clinic for help..all came back negative apart from varilla zoster in blood but not conclusive to actual shingles as the recent aciclovir has stopped any blisters! Ended up with 5 outbreaks since Feb and a hospital visit as worst burning and stabbing pains ever had..requested iv drip of aciclovir only to be taken off die to non diagnosis! Apologies from doctors and several said possible allergy and some say shingles! Now being sent to immunologist!! I know from your problem that this is common to have more than once and that docs are unaware...sympathetic to you...hope we all get help!
  • Posted

    Very helpful thanks for sharing. I also use lidocaine patches it keeps the area clean and numbs the pain. Change it every 12 hours. 

     HOPE xxx

  • Posted

    Hey, I'm so sorry that you have been getting them so often. About 4 months ago I got my first outbreak. I'm 28 and I'm relatively good health. No immune issues or anything. My doctor just figured it was stress because I'm getting ready for a huge art show and my husband is deployed. I wasn't lucky enough to get on the anti viral meds because I saw the rash on December 23rd and it didn't hurt so I didn't think anything of it. I was on pain meds for a jaw issue so hats probably why I didn't feel the pain. So the next day my head started to throb and my ears were killing me. I felt like my ears were going to explode. So on Tuesday (the doctors office was closed on Monday due to the holidays) I called and made an appointment for my ears. I figured I just had a double ear infection. After he looked at my ears and said nothing was wrong I decided to show him the small little rash on my lower back on the left side. He looked at it and said well you have shingles.... well I feel like I am a pro now because every month they come back in the same spot. In November a month before I got my first outbreak I decided to get off my birth control pills because my husband was deployed so there was no reason for me to be taking them. So every month right when I am about to start my period they come back. My doctor is baffled and I told him that I'm afraid I am going to end up in a medical book some where hahaha. So after the 3rd time we decided it was time to go back on the birth control and see if that could help. Well what do you know, my lovely friend shingles came back to visit me. So hopefully next month when the birth control really kicks in they won't come back. My doctor is at the point where we are used to our monthly visits and he doesn't even feel like the anti viral meds will help because these outbreaks are only painful for about 4 days and then the little rash goes away in about a week. So he prescribes me 10 pain meds and if I want he will prescribe me the antiviral but he says they probably won't work because they haven't seemed to help in the past and then he send me on my way home and says I will see you in 4 weeks 😑 Does anyone else (female) get reoccurring shingles in the same spot that correlates with your period??? I'm really curious to see if I'm not the only one.

    • Posted

      Hello Katiebug619,

           I sent you a private message with some information on it you might find useful.  I'm going to send another private message with some new information about the "newer vaccine" coming out later this year or in 2018.

      Sincerely,

      Thinsport

       

    • Posted

      Can you send me the info on the vaccine too. I am waiting for the new one!!! I was told it was suppose to become available in 2017!!????? I've been waiting since last year.

  • Posted

    Hi. Is this discussion still active? Im 27 years old female and was diagnosed with shingles last april 2017. It was a mild case i guess. And i diagnose it early so i tool antiviral meds that the dr prescribe. Blisters dried for a few weeks after taking meds. I thought i was healed. But the low energy and fatigues are still there. But there are days when im totally fine and have all the enrgy that i have before shingles but some days that are dull. But last week i started feeling sick again. Flu like symptoms without fever. And just yesterday a blister started to appear again and was ichy and painful and uncomfortable. I havent seen my dr yet maybe today I'll pay her a visit. Im really confused and stressed about shingles. Been reading alot about this desease and its making me sad and depressed. I cant help feeling down and sad. Can someone help me. I havent spoke to anyone about this exept for my dr who is very pricey. I live in a country when shingles is very rare sad

    • Posted

      I am so sorry for your suffering. I have felt exactly how you are describing for 3 years now since my first outbreak of this aweful disease. You HAVE to listen to your body. It is impossible to power through the tired days. You must cater to your bodies demands. Squeeze in a nap. Get a message. Meditate. Whatever calms you and allows your nerves to reset and rest. Sleep seems to be the best for me. My diet has really helped lessen my problems also. I eat mostly Fruits and vegetables and seeds. Nuts are high in arginine and meats are high in l-carnitine, which can stimulate the virus. Chicken and wild salmon have the lowest content of the amino acid. I take vit B-12, B complex, magnesium and calcium supplements. Please keep your thoughts positive. Many people spiral into depression with this. It's a bump in your journey that you have to adapt to.

      God bless

    • Posted

      Not sure if I'm replying to the right message but just to say, this forum has been great for learning so much about this terrible condition that sadly doctors and medical profession here in the U.K know so little about. I've had recurrent shingles for 6 years and it's been the bane of my life and caused my no end of pain. I have PN which is common (nerve damage) down my left leg as my shingles continues to flare up on my left buttock and left side of my back. I've probably had shingles over 50 times and that's no exaggeration. In fact I loose count as I used to go from one episode straight into another one. The good news is and there is some that antivirals are a must, I've taken lots of different ones as I become resistant to them but they still help ???? magnesium, calcium and B12 which I read about on here all have helped ease the flares and I've learnt to understand what my triggers are so avoid at all costs.

      Sunbeds are a big no no

      Being tired and not getting good sleep

      Too Stressed or overwhelmed can trigger a flare

      Over doing it full stop

      Using certain creams / lotions

      If I avoid the above which can be difficult as I have to work then I've managed to keep the flares down. The longest in between has now been 6 weeks which is quite a record! I eat a healthy diet too so I'm doing all I can in that sense also.

      My advice would be read all the posts from people and don't loose hope. You can manage this. Sadly I've not met anyone who has cured themselves.

      I wish you well and really hope you can get some rest bite from it all.

      Kelly x

  • Posted

    OMG is this infection is for lifetime?? It give me a lot of stress.I got shingles on 23 May after 22 days from my chickenpox.Two types of infection in a month is the worst feeling of my life.Now shingle has reoccured after a week from my first shingles.Now it looks little less affective.I am using hepkind which works well.I just wanna know that do shingles have an end or not ? I am 16 years old adult and have a long life and i want to leave it disease free.It is just breaking me uo from inside.
    • Posted

      Hi Smarty21,

      First, don't panic. Anxiety is the worst thing for shingles and causes more pain.You're super young so your body will probably bounce back in time. But, this disease is the kind that cannot be rushed through. It may take weeks or even a few months for you to feel back to your full functioning self. Be patient and take really good care of your heath now. 

      Sleep more. Rest. Eat a healhy diet with no junk food. 

      You say you got shingles again after your first shingles outbreak, but you probably never got rid of the first outbreak and still have it. Go back to your doctor and ask if he/she thinks you have a new shingles virus or and still recovering from the first. Good luck. 

  • Posted

    Yes It is true that shingles occurs due to stress because I got it second time when I was in stress of results.

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