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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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  • Sharkbaitstar
    Sharkbaitstar Guest

    Posted

    I am 21 years old and this is my third time having shingles. I have it on my left thigh, and I am so glad to have found others like me! At first the doctors were skeptical because I was 20 when they first diagnosed me with shingles, and I was just as surprised as they were to find out. But they reassured me saying after medications I shouldn't have another outbreak for a while, if not any at all. Six months later I had another outbreak, same area just a couple inches moved. 8 months after that, here I am today with the same firing pain and numbness. I'm going to the doctor today because it's hurting me so much. I wish they could find a cure for this, I'm scared im that exception that will be having shingles all my life. I haven't found a pattern at all, therefore I can't seem to find the reasoning behind all of this. Is there anyone out there with the same issue! Someone who is in their early twenties and keeps having reoccurring shingles??? I'm going out of my mind here. 
  • julie_15509
    julie_15509 Guest

    Posted

    I am going on fourth month of continuous severe pain from shingles in my back and now have developed a new rash on my stomach. ON BOTH SIDES OF BODY.
    • linda65569
      linda65569 julie_15509

      Posted

      Thanks so much for sharing. I thought I was the only one. This is 4 months of Hell for me too. I saw my acupuncturist and 3 doctors who refused to believe this is Shingles. I'm going back today, if nothing else than to prove to the medical community it is NOT poison ivy. Mine are on both sides as well. They have never blistered like before, just red, raised patches of itchy bumps covering mid spine and outward on my back. There are also patches up my neck and into my hair, both breasts, rings above the waist and below the waist. Last night new bumps started up the back of my leg along the nerve that has been so painful since June. The only relief I have found is a scalding shower, aiming the wand on each of the patches of bumps. It hurts but deadens the pain for a couple of hours. I've had 4 steroid shots, 8 days of Predisone, FML eye drops, and a steroid cream. I have an autoimmune disease, so I'm wondering if all these steroids have further depressed my immune system and extended the duration of these shingles? Thanks to any readers who might have advice!
    • paddi60529
      paddi60529 linda65569

      Posted

      If I had an autoimmune disease like you, I would be cautious about taking the steriods. wow you're taking shots, pills, eye drops and a cream, that shounds like a lot for your system to bear. could you look into trying some natural remedies to see if that might work for you. Relaxation techniques, non stress exercise like walking for an hour every other day.  There are oils to mix in baths for relaxation, visit a good natural health store and read read read. Hope that helps.

       

    • linda65569
      linda65569 paddi60529

      Posted

      Thanks! Yes, I agree. I just couldn't get any of my docs to diagnose these Shingles and treat appropriately. I was told by 3 different ones that I had poison ivy. I do acupuncture, Chinese herbs, and Qi Gong, but even those brought no relief. So frustrating! I was left with PHN which only now, 6 months later, has improved. I started essential oils in hopes of strengthening my immunity. My hair is still falling out! Can't do the tub soak or the walking as I need a knee replacement which I'm putting off for fear of more Shingles!!! This was my second episode in 3 years, both brought on by stress. My faith in doctors is all but gone now. Maybe improving my diet and losing weight can help. Can't hurt! Thanks again for your interest! 
    • paddi60529
      paddi60529 linda65569

      Posted

      Google the 'blood type diet'. maybe that will work for you. have been on it for several weeks and must admit i feel better and my clothes are getting looser.
    • jen13278
      jen13278 linda65569

      Posted

      I am experiencing hair loss, too. After reading the comments here I realized that I have been having shingles outbreaks for many years. In February of 2016 I had my first officially diagnosed case and it was horrible. I began having another outbreak just 4 days ago but because I believed that it could only occur on one side of the body never thought that it could be shingles AGAIN. I have red, angry blistering on both upper arms to the elbows and across my chest with small patches on my jawline under my ears. Also, the band on my left side (mid-spine around ribcage to mid-navel) is now blistering up again. I am going to the doctor today. Luckily, my doc is very attentive and open to new and alternative treatment options.
  • J4n3
    J4n3 Guest

    Posted

    me too - 10-11 weeks of continuous Back/front pain, LHS, no rash, just ocassional single small blisters that disappear in an hour or so. Started up in my RHS about ten days ago. Low bowel activity causing problems, also can't cough! 12 weeks ago I could do an hours yoga, hold a headstand for 5 mins - now can barely walk. HELP!
    • linda65569
      linda65569 J4n3

      Posted

      Update...just saw the Derm doc again who says this does not look like Shingles to her. This time she did 2 biopsies but won't have results for 2 weeks. Ahhhhhhh!!! She gave me an RX for a stronger cream to help with the itch. Nothing for sleep tho. She thinks this could be related to Sjogrens or another auto-immune disease. Feels like progress - maybe? 
  • Nola7
    Nola7 Guest

    Posted

    Bless You!

    i cannot believe my eyes! Your description of your shingle outbreak frequency and location is almost my experience. Only, I have suffered recurrent shingles outbreaks for 42 years and developed severe PHN 18 years ago. I too have been told  that my presentation of blisters was "unheard of", that the blister outbreaks rarely reoccurred, mush less break out monthly! I saw a neurologist a few years ago and wanted to find out if Capsicum patch treatment would help my severe pain. She treated me like a drug seeking liar!

    My simple advice is see a doctor the moment a person suspects shingles and take the antiviral drugs prescribed. This is the best thing to reduce the chance of chronic pain from PHN.

  • sam77518
    sam77518 Guest

    Posted

    I also started with shingles at the age of 35. I initially got it once or twice a year but Inow get it every couple of months. It's only in the last 2 years that the Drs have recognised it as shingles . I also get it at the bottom of my spine spreading to my right bum cheek. We looked into the injection but was told because the infection was in the S1 area and it was recurring shingles the injection would not work. The only solution I was told is to keep an ongoing supply of aciclovir handy so that as soon as I could feel and recognise an outbreak coming on I had the medication handy. I have scars where the outbreaks have been particularly bad. 

     

    • Zxcv5678
      Zxcv5678 sam77518

      Posted

      I have also been having recurrent shingles type virus on my butt cheek at vaccine injection site for over 10 years. It started in my early 30s. I thought it was a spider bite, then went to the doctor. Stress usually onsets it, I feel a dull pain on right side of body a few days before outbreak. I've never had outbreaks in any other spot. I usually am very fatigued during outbreaks and have low energy. I got chicken pox as an adult- at 25. When I went for treatment for chicken pox, the nurse gave me a vaccine for it and said she didn't know what that would do. My chicken pox was really bad and it eventually went away, and I remembered the scenario of the vaccine at that time. My rash occurs at the injection site. I also thought it could be caused or spread by tanning bed- as I noticed that an outbreak sometimes would happen after tanning bed. I also considered that it could've been spread sexually- but with no other rash sites- that seems very unlikely to me. I usually get a rash anywhere from 1-4 times a year- it's very frustrating and consumes my energy when it reoccurs. It's helpful to have found this thread- as I felt like the only one. Thank you.
  • glochessum
    glochessum Guest

    Posted

    I am so pleased to have found this thread. I also have a reoccurring circular blistery rash just aside from my cocsix that was diognosed as shingles years ago. I thought the diagnosis must have been wrong as I have had it so often. It always occurs when I have been feeling down or stressed. I've just been putting up with it as painful as it is. I will now be in contact with my go for medication. Thank you all.
    • Zxcv5678
      Zxcv5678 glochessum

      Posted

      I have the same thing- I have also been having recurrent shingles type virus on my butt cheek for over 10 years. It started in my early 30s. I thought it was a spider bite, then went to the doctor. Stress usually onsets it, I feel a dull pain on right side of body a few days before outbreak, and then all I can do is sleep and work for a few days. I've never had outbreaks in any other spot. I usually am very fatigued during outbreaks and have low energy. I got chicken pox as an adult- at 25. When I went for treatment for chicken pox, the nurse gave me a vaccine for it and said she didn't know what that would do. My chicken pox was really bad and it eventually went away, and I remembered the scenario of the vaccine at that time. My rash occurs at the injection site. I also thought it could be caused or spread by tanning bed- as I noticed that an outbreak sometimes would happen after tanning bed. I also considered that it could've been spread sexually- but with no other rash sites- that seems very unlikely to me. I usually get a rash anywhere from 1-4 times a year- it's very frustrating and consumes my energy when it reoccurs. It makes me feel awful. It's helpful to have found this thread- as I felt like the only one. Thank you.
  • paddi60529
    paddi60529 Guest

    Posted

    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 a bit of a hard head, outdoors a great deal of time. Second year I plain forgot once it began clearing up. 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 meds 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 if bathing with epsom salts would be beneficial. Will follow up with some new ideas in time. Stay happy and positive in the meanwhile. Thanks for listening.
    • paddi60529
      paddi60529

      Posted

      One more thing, I exercise (walk), do tai chi, meditate, avi gardener, learning to sing karoke, climb hills, have started the 'blood type diet', and overall am a positive, happy, take charge, must be in control type person. My self treatment may not be your Rx. Each of us bears the resposibility to research all we can and make our own decision to what we are willing to try to get relief. Good luck to you let's stay in touch, thank you.
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