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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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  • lilie27648
    lilie27648 Guest

    Posted

    I'm 62, have had shingles since age 25. Now, I'm very seldom free of shingles. I have the same rash pattern as you. I can't have any kind of warmth. I live in a cold climate, but can't wear a coat. I carry one and have to watch for hypothermic symptoms. The fatigue, now, is surprising. I was pretty physical: yoga, taekwondo, hiking. I sweat so badly and it brings on an episode, so no more exercise. I did take antivirals, but had a severe 'blow out' episode after taking a course and then began having these back to back episodes, so can no longer take them. I take pain meds, have a good home situation, I write poetry (have published three books), learned another language, read, and am learning to read music. I have been studying meditation for many years and it is helpful. In the beginning, there was much stigma, little info or help. Now, I'm very thankful to those who tell their stories. I wish for you the best that any comfort and medical knowledge can provide. Thank you for sharing, and for listening.

  • Likespink45
    Likespink45 Guest

    Posted

    Always breaks my heart reading all these posts because I’m having my third shingles outbreak this year! At least half of my left bum is covered in the rash and as always the trigger is the same. 

    I’ve been taking magnesium, B12 and D hoping that this was helping but these last few flare ups have been awful. The winter is always worse and I try and avoid all the things I can that can cause a flare but sometimes i do think I’m aware of the mental wellbeing that may be taking it’s toll. 

    Stay well and if anyone ever comes up with a cure then please please share. Any other ideas gladly received. I read all the most so try out lots of ideas that I see 

    Thanks so much for this little community. It’s a lifesaver x 

    • hal90651
      hal90651 Likespink45

      Posted

      The only secret is to have as much antiviral in your system before the outbreak . There is several fruits & vegetables that real do the job.. Garlic is one of the best. Tamarind pulp has a lot of  anti viral in it. Granabana pulp is another great fruit pulp  . And also the mirical drink ; beet, carrot & apple juice every day, mixed . Easy on the beet juice it might lower blood pressure  to much . I do about 4oz. With my mix. And of course organic apple cider viniger. Mabey I over do it, but I’ll never have shingles again.

  • alexy28638
    alexy28638 Guest

    Posted

    Four outbreaks in the last year and a half. Mine is on both sides of my body, symmetrical. It’s gone from the back of my knees, to my ankles, and now to my armpits. Total fatigue and flu feeling just before, clammy, headache, shooting nerve pain, stiffness and weakness near the affected limb. Itchy, and burning rash- Apple cider vinegar works to prevent itching and helps to “kill” it. Soon as it scabs, the muscle pain sets in- feels as if I’ve over-worked my knee for example, when I’ve actually done nothing. Had to wear a knee brace after the first outbreak. With my recent outbreak under arms, I had mild fever several days before rash appeared. Now all of my previous sites are active for pain as well. About my doctors visits: GP said not likely shingles. Used needle/swab to get some “juice” from blister- came back negative but I had already had the rash 3 weeks at the time. GP said not likely shingles due to recurrence but couldn’t give me any idea what it could be, and was told wait and see if it comes back.....finally took myself to dermatologist on this 4th outbreak. She took 2 biopsies under my arms and I will have the diagnosis soon....expecting positive for zoster. To be clear, my joints are not swollen- this is not RA. This is nerve and muscle pain, not joint pain, and feel totally weak and ill. I’m 47 years old, and in good health. Had pox as a young kid. This last outbreak happened the day I flew back from putting my dad to rest- a very stressful situation. 
  • SpareMoment
    SpareMoment Guest

    Posted

    I Have dealt with recurring shingles on lower spinal nerve at the left side since the 90s. I will be 65 Sat. And female. In the past they ‘just appeared’ with the notice of tingling and itching and wishing 12 hours the pain ensued along with the red bumps .... within 24 hours the pain becomes intense and the patch grows.  After many doctors and visits it was confirmed to be recurring shingles. They wanted it to be everything but that. (I had childhood chicken pox vaccination without incident and no scar on my arm) finally it was determined I should treat with mega doses of Valtrex. As years passed generic Valcyclovir was prescribed later replaced with Acyclovir. I find no difference in how either work but they do work. At first tingle I take 2000 mg every 4 hours for 3 days. I also later was prescribed and added ointment Denavir. Very expensive but so helpful. Commonly used for fever blisters, the tiniest amount spread on the place at the immediate onset and a couple of times that first day (or two) will Help stop blisters from forming. 

    I had typically not experienced advance warning such as tiredness, or stomach problems though as a migraine sufferer, I would get those. This time I was having all sorts of unexplained symptoms I didn’t think of a pending outbreak. But then it feared it’s ugly head two nights ago. 

    My thoughts are I brought it on by my recent Valentine candy eating. I don’t normally eat chocolate but  made an exception and this might have been the trigger. 

    I encourage any one who suffers if you can get a Rx for these meds to have on hand so you can address symptoms promptly. The pills are generally not expensive over all. The cream is even with most insurance plans. But I refuse to be without it. 

    Good luck with your healing. 

    Hope this one passes quickly for me. 

    • lilie27648
      lilie27648 SpareMoment

      Posted

      Oh, you are talking my experience!  Unfortunately, other than the standard protocol of antivirals, antianxiety, antidepressants, lyrica, gabapentin, there's not much.  I, too, have pain all the time.  I have body sides of my body affected and have little, if any, times between outbreaks.  I don't go out in the sun and I am careful not to be in the heat or to use heat for any reason.  Today, I'm running a fever, although it is down some from earlier today, 100.1.  The sweating, fatigue, chills and pain are hard to cope with.  Very few understand it, including doctors.  They all seem to have a different take on shingles.  My healthcare provider, an NP, is, at least, listening but no real help there.  We have to find our own things that work and keep trying.  I don't do too much with western medicine anymore.  I do take pain medication.  The antivirals can backfire on us and we can develop resistance to them -- happened to me.  The other drugs, something else to create more side effects.  I use meditation and other skills as distraction and that works, and a sense of humor.  I hope, since there are so many of us now, that this is something of interest to research.  Immune disorders are some of the hardest knots to untangle.  I wish you the best.  Thanks for sharing your experience, that's valuable. 

    • john96482
      john96482 lilie27648

      Posted

      Lilie, do yourself a favour and see my post on the treatment of shingles and fungal infections. Doesn't cure the problem but it gets rid of pain and itching.  In case you can't see my post, mix apple cider vinegar with water 50:50 in a spray bottle and spray over infected area-leave to dry --then coat the whole area with plain yoghurt, rub in and allow to dry  -do this three to four times per day to start with reducing to twice per day.  These products set an acid environment ----It works --guaranteed.

  • mary05897
    mary05897 Guest

    Posted

    I have had shingles twice and my outbreaks are patches of little red dots that itch like crazy, but later in the virus, some of my spots become bigger.  They are on both arms this time instead of one side of my body. Last time they were on one side of my torso. This is a very atypical virus and my pain is with my internal organs, not my rash.  I feel like my organs are trying to escape my body.  I have nausea, headaches, body aches, brain fog and just want to sleep to get away from it all. My greatest problem is that I have absolutely no strength, total fatigue. Just barely able to show up for an appointment I am losing potential customers and that is causing more stress.

    stress.I found your post interesting, because your rash sounds very much like mine.

    • john96482
      john96482 mary05897

      Posted

      Thanks for your reply Mary, I have used every antifungal drug known and as a former ICU/CCU nurse, I can tell you some of them are extremely dangerous to the internal organs.   I live in a hot humid area of Australia and the Rashes are endemic to the population.   I have found maintaining an acid environment is hated by all types of rashes and viruses.

      mix apple cider vinegar with water 50:50 in a pump spray bottle--spray the whole area with vinegar and rub in.  Allow to dry --then coat the whole area with plain yoghurt and rub in.  I spray the vinegar three times per day and spread the yoghurt twice per day.  I have always found it very beneficial to spread the yoghurt after a shower at night so that you can sleep well overnight with the coating of dry yoghurt.  Time the treatments for visitors or going out activities,  the smell is not too bad but you don't want your friends making comment.  All the best with the treatment.

    • alexy28638
      alexy28638 mary05897

      Posted

      Hi Mary,

      You have just described my illness- I am currently having my sixth outbreak. This time the rash is only on my right upper abdomen and right breast. I feel horrible- exactly as you described like I have a flu and all of my muscles feel weak and achy. Blinding headache at times. Can’t focus my brain. I’ve been taking Lysine tablets this time (anti-viral amino acid used to treat herpes) and using apple cider vinegar on the rash which helps to stop it from itching. I’m hoping the Lysine helps my body to recover faster. Seeing a naturopath this week to get a fresh opinion. My dermatologist is still being stubborn about this being shingles, which is really frustrating. I feel like she is siding with my primary doc who referred me because my primary doc didn’t diagnose it with the first rash, saying that shingles is never on both sides and never recurs...... sad On top of that, the biopsy, the tissue cultures I allowed them both to take were not processed using the one actual lab test that is the most accurate for diagnosing shingles according to the CDC’s website: PCR testing. She said that PCR is “new” - so instead I got a $1500 lab bill and told I’m simply “having a reaction” to something unknown. I take no meds, and eat a clean diet. This is not a reaction to something. Keep me updated on your condition. Thanks for posting!

  • steffy212
    steffy212 Guest

    Posted

    My first outbreak was at 14, I am now 58 years of age.  The reoccurrence was approximately 3 times a year, now I rarely have a break when I don’t have them.  Since my Dr. insisted I have the shingles vaccine at age 53,  I now break out on both sides.   I am prescribed aciclovir, I do not go to tanning beds and don’t layout in the sun, never have.  My family says I’m a freak of nature.   I stay in pain and it has done permanent damage to my nerves, I don’t know where to turn for help.
    • john96482
      john96482 steffy212

      Posted

      Steffy, see my reply above--shingles and fungal infections hate acid environments,  apple cider vinegar and yoghurt will change your life.
    • mary05897
      mary05897 john96482

      Posted

      John,

      I started the apple cider vinegar a couple days ago. I take a good probiotic but will try the yogurt too.  Thanks!

    • john96482
      john96482 mary05897

      Posted

      good to hear, I have found the yoghurt adds a coat of 'plaster' over the whole area and lasts for hours.

  • maggie08507
    maggie08507 Guest

    Posted

    I’ve been having outbreaks on my shoulder since I was 24. I’m now 44. I get it every year. I have a scar that keep getting bigger with each episode as it moves closer to my neck.  Are usually know about three days before it occurs. It sends shooting pain my neck towards my jaw and a stabbing in my ear.   There is only one year that I did not get it and I was in the tanning bed. So I thought hey I found a cure. Guess again that was in that I got it the next year. I always seem to get it in the summer months there is only one year that I did not get it and I was in the tanning bed. So I thought hey I found a cure. Guess again that wasn’t that I got it the next year. I always seem to get it in the summer months.  be it last about 4 weeks.  When it’s gone the pain is gone as well, thank God. 
    • mary05897
      mary05897 maggie08507

      Posted

      Maggie,

      I tend to get them as well in the hot weather. I read that someone else noticed that the hot weather seems to bring them out. I received a wonderful recommendation from a friend.  L-Lysine is an amino acid that is great to take to prevent having an outbreak. Read about the great benefits.

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