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
  • Tfinden
    Tfinden

    Posted

    I am a 55 yr old woman living in California

    For the last 4 years I have had an outbreak of shingles about every month

    They are always on the left side of my head

    Just one or two small clusters but very painful for a few days before the blisters appear

    My husband is asked to look at my head with a flashlight and I point to where and nothing is there until a day or two later and poof there they are. Ugly as ever

    My doctor gives me valtrex and it does help if I take it at the first sign of pain but if I wait a day it is not effective

    The meds are too expensive so I go without otherwise it would cost me about $50 a month having no income and my husband having cancer going without is my only option

    I have never hear if anyone else getting them on their head no less getting them so often for as long as I have

    Found this site and for the first time find others that get it as often but not on the head

    I wonder if they will ever go away

    • cyndi42546
      cyndi42546 Tfinden

      Posted

      I have gotten them on my scalp. I didn't know what it was. I was diagnosed with shingles about a month later when it affected my right side of face, ear. 

      When I had it on my scalp it was on my right side near my ear in a line like bug bites. They itched like crazy then got very painful when I touched or brushed my hair. 

    • cyndi42546
      cyndi42546 Tfinden

      Posted

      Last June I started getting shingles on my head/scalp area. I didn't realize what was happening until it went to my right ear and jaw. I started going to the dr who diagnosed it as shingles. I was given oral steriods and valtrex. As soon as I stopped the meds after 7 days it returned and I started taking meds again this time for 10 days. The same thing happen to me when I quit taking my meds it returned. This happen about 6-8 times from October 2013 to February 2014. I went to several specialist and not one dr could figure out what was going on. I had a dr tell me it wasn't shingles. I had dr tell me shingles doesn't reoccur like that....I had one tell me he didn't know much about shingles...on and on ...in April of 2014 I was diagnosed with breast cancer. After reconstructive surgery I started getting hives. It's been almost 2 weeks and I'm still getting them not as severe as the first outbreak. The hives were so bad that I got shingles again this time near my surgical site. The pain was different then on my head however there was no denying it was shingles. I only got a few bumps but the pain was severe like shards of glass in my skin. 

      I truely believe drs do not know what shilngles is, how it thrives and where it develops. 

    • james17171
      james17171 cyndi42546

      Posted

      Hi Cyndi, I just got your message and wanted to respond to u by saying yes it is hard to find a doctor that treats u with the respect and knowledge of systems that can cause us so much pain that it reduces the quality of life we are used to. I have been blessed to have found a doctor that takes very good care of me.. I was recieveing my care at the VA hospital and I kept having this pain at the middle of my back radiate around my rib cage and into my stomach. At about every 3 to6 months on the upper right side of my back I would get these cluster of pimple like things. The pain was unbearable.  Two years ago I had started having this pain that was bringing me to tears. I asked my VA doc to put me on some stronger pain med than percocet and she put me on morphine 15 mg. Quick release tabs. The bottle said take one every six hours. However I found that one was not enough. So I was taking two every 6 hours. I came in in five days to try to get a refill and she raised her voice and steamed at me telling me those were posed to last 10 days. To say the least I felt shamed and humiliated beyond belief. Ironically I was scheduled for at cut scan that day. And u know what they found.?  A tumor on my t10,11 level on my spine. Compressing the T 10,11 nerve an displaces it toward the back  of my spine. Oh I forgot to say after two refills before she found out about the tumors she abruptly cut me off any relief I was getting from the meds. So I was having shingle pain and the pain from the tumor. Oh yeah if any veterans read this article be ware of a doctor by the name Dr.( lol) Connie Morrantis, at the Seattle  Veterans Administration Hospital. Hang in there you will find a good doctor. Jim17171
    • cyndi42546
      cyndi42546 james17171

      Posted

      Dear Jim....my dad's name was Jim and he got the run around at the VA Houston years ago. It took for EVER to get him the help,he needed for Alzheimer's. I understand what you were dealing with and it makes me so sad for all of our vets who need and deserve health care. The system is a mess. I'm happy to hear you found a good dr and the cause of your pain. I truely believe my shilngles was because of breast cancer. Cancer and tumors cause to much stress inside our bodies before we realize what's happening. I'm getting serious help now....I keep my Valtex close by!
    • c1317
      c1317 Tfinden

      Posted

      Hopefully you're either experiencing relief or you see this asyou posted so long ago... Over the counter Cimetidine tag named Tagament for gastrointestinal issue shows marked improvement of pain & duration of symptoms. I got a 60 count bottle at CVS for approx $18.00 & I'm sure others places are cheaper we went for close proximity is all. Good luck, feel better. I also have recurring outbreaks but mine aren't on my face but my other end..😰😕😥
    • jayneejay
      jayneejay c1317

      Posted

      Hi C1317

      thanks for info - i too get recurring shingles ( 6 times this year ) 

      always on my Butt cheek 😮

      only started with it this year - i am 51 ..

      jay x

  • timsin
    timsin

    Posted

    Hi, I am a 35 year old male who has just experienced my first 'episode' of Shingles. I don't know how common/uncommon it is to have shingles in the eye ( Herpes Zoster Opthalmica) but all I can say is that I have never, ever experienced pain of such intensity, it began when I woke up with a feeling of having something stuck in my eye, however, after looking in the mirror I immediately realised it was something more serious. My eyelids were swollen massively and my right eye was completely bloodshot. After visiting my GP he sent me straight to eye casualty at my local hospital. Thanks to the quick action of my consultant in prescribing me a heavy dose of Aciclovir tablets, cream and steroid drops I was later told I was lucky to not have any permanent damage to my vision, left untreated it will make you go blind. Scary stuff for myself as I have never had a serious medical condition and keep I keep myself in shape by weight training and motorbike racing.

    Anyway, the meds did work after 3 weeks of pain I hoped to never experience again (I don't think I'm being soft here, I have broken bones before and crashed my motocross bike more times than I care to remember and not even a badly broken bone compared to the very worst of the shingles pain!) I was back at work when a bolt of unbelievable pain shot from behind my right eyeball and spread very quickly over my forehead, scalp and back of my skull. I returned to the hospital and was told that I have Post Herpetic Neuralgia, when I asked how long it would take to clear up, the consultant shrugged his shoulders and said 'maybe3 months, maybe 5 years, who knows,but it will be with you intermittently for the rest of your life at varying levels of intensity'. I have now missed 5 weeks of work and am still in no fit shape to return. I know I've 'waffled on' here, I'm just very worried, ok, scared that this is going to ruin my life. Has anyone else gone through this and if so could you please offer me some advice on how to deal with it. I am currently on Tramadol Hydrochloride and Amitrytptiline which is making me dopey and lethargic. I'm at my wits end to be honest. Thanks in advance for any advice anyone can give me, it will seriously be appreciated.

  • marci59533
    marci59533

    Posted

    I am a 54 year old healthy female. I have been experiencing these outbreaks in the same spot (right buttocks cheek) though I did have one outbreak on the left side. This started about 4 years ago, a year after brain surgery. So, maybe stress/trauma contributed. I thought it was just an annoying itchy recurring rash but it can also be extremely painful--sometimes too painful to sit. A couple of months ago I had three outbreaks in the same spot--it was awful-so finally went to my dermatologist who diagnosed me with herpes! I have been married for over 30 years so this was slightly horrifying. I thought that maybe it had been dormant for a pretty long time. She did not do any testing, just a visual test. I went on Valtrex, then Acyclovir and both made me quite ill. So here I am and it's now recurring more and more frequently. My understanding of herpes was that it got less severe over time--mine is not presenting this way. So, I wonder if it is recurrent shingles. I haven't been able to confirm anything with a test and the last two doctors have said that a test won't matter since herpes I and II require the same treatment. Soon I will see another doctor so I hope to get an answer.
  • ellis_emmerson
    ellis_emmerson

    Posted

    Timsin

    I have had a recent episode of shingles for first time and it was awful,this was following an illness in hospital which kept me off work for five weeks.....however my advice is about tramadol.it sends a shiver down my spine..I took it for a previous illness and ended up having to withdraw very slowly from it as it is very addictive once it takes a hold.moreso some people say than heroin......there are lots of posts and forums for support.i didn't realise until I decided to stop it...it's known as the devils sweets.if you are feeling awful on it,then take advice....doctors seem to prescribe it without a thought.

  • Jazz6034
    Jazz6034

    Posted

    I have been having recurring shingles for more than 10 years now. I find it very debilitating when it rears it's ugly head.

    I am allergic to acyclovir , so can now no longer be prescribed it.

    I have just recently had an out break and had a bath with Melissa essential oil in it to help me to sleep.

    It healed the blisters up,really quickly and dramatically reduced the inflammation .

    I normally use antihistamine - fexofenadine and high strength ibuprofen to reduce the itch and the pain. I also fine cold sore plasters over the blisters help a little too.

    I have been referred to the hospital as my outbreaks have become more,frequent, 6 in 8 months. I am finding it appears when I'm menstruating?!. Also,when I'm run down or very stressed.

    The hospital doctor is not convinced that it is shingles. I have now had to provide swabs from the burst blisters to try to confirm it.

    My next apt is in may so I will keep everyone informed.

    Commiserations to fellow sufferers

  • lisa69773
    lisa69773

    Posted

    I stumbled on this website and am shocked to find others that have had recurring shingles. I have been having breakouts for almost 8 years now. Originally diagnosed with recurring Cellulitus,the docs are now leaning towards shingles. My outbreaks are usually mild, but alway occur on one side of my buttocks. The rash is preceded by flu-like symptoms, pain in my hip (groin area) and then the rash usually starts after the aforementioned symptoms. Rash is always painful and red, and difficult to sit on. I never get blisters, only a large, warm, red rash. I've been breaking out about 3 times a year. Previously treated with antibiotics, but now taking Valtrex as soon as the outbreak starts. This current break out has occurred during pregnancy…most likely due to low immunity with pregnancy. I was glad to see that others have had the same outbreak on the buttocks! Good luck to all of you.
  • jlfb
    jlfb

    Posted

    Hi I'm a 69 year old who is reasonably fit and active. I've been suffering with shingles for about 5 weeks. I took anti virals quite early on as slight rash & before bluster outbreak. The rash manifests itself as an 8in swathe from my navel, around my ribs to my spine on my right side. Ibuprofen, paracetamol, co-codomol ... none of it works. I'm worn out with the deep pain, surface shooting pain & hardly ever wear a shirt as my body is too sensitive. Sleeping is so difficult ...a nightmare!

    My dr has offered me tricyclics & anti convulsants but I'm wary of these meds but I guess I'm going to have to accept. The only self medication that works at all for me & makes the condition slightly bearable is a few glasses of wine in the evening. Alcohol is supposed to be no good but it helps .... & I miss nuts!

  • saz_59060
    saz_59060

    Posted

    Hi I've recently been diagnosed with shingles first time but have them on the inside of my left buttock cheek however the otherside of the inside of buttock cheek my right side has got sore?? I know they say it only stays on one side but im wondering if because of where it is and me putting the cream on its rubbing and making it sore I just dont know? But I am getting pain kn both sides?
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.