My shingles never go away

Posted , 7 users are following.

I was looking at the stories that people have here about the never ending shingles.  I have had them for the past 5+ years now and I have them in my mouth, and throat, sometimes they get around my ear canal, and even have got so back I cannot talk.  Most of the time when they are acting up it is hard to eat anything mostly drink lots of ice cold water, or Milk, and eat anything that will slide down easy.  I am glad to see that I am not alone in this struggle.  I usually feel tired or flu like for a day or so then the sores come in and after a couple days of wanting to crawl in bed and stay there then I cannot eat or talk much because my mouth and throat are blistered so bad.  I was beginning to think something was wrong with me until I read your posts.  I did not understand why I had them all the time and some people get them once and not again.  I guess I have a week imune system but otherwise I am healthy never have ate alot of junk, but stress is over the top and this came on when a family issue started.  It is in the past but now I get the remnants from all of that for the rest of my life!!  Gotta love family.  I do by the way love my family, but it is hard sometimes to deal with the drama!!  Anyhow Thank you for the posts and making me feel better about being crazy.  God Bless all and calm and happy thoughts!!

0 likes, 14 replies

Report / Delete

14 Replies

  • Posted

    Laura...thanks for sharing your story. I have been frustrated with my nearly 4 months of this. It is even worse as none of my docs will accept it is Shingles. They go strictly by the book, so I've only had Steroids. Nothing for pain or to sleep. This morning there is yet another rash in a different dermatome this time. Fortunately it's like they are fading as intensity is not nearly so bad. I'm wondering if I might have something new now in addition to the Shingles & PHN itch. I'm on my own here, so I sure appreciate your comments and wish you the best. My friend believes in oils and tells me diet is the key as well as reducing stress. Thanks to everybody who shares their info!
    Report / Delete Reply
    • Posted

      Maybe get a different doctor I was fortunate enough to have a good doctor and she immediately told me what it was but ran blood tests to confirm I take valtrx  for the symptoms every day and still get them but when they are bad I double up on the meds and it helps some.  The pain I am not sure that it gets better but after a few days it lets up a little stay strong!!
      Report / Delete Reply
  • Posted

    Hi Laura,  Ive just read your post and know exactly how you are feeling, like you i get regular recurrent attacks which are truly awful, unless you have had shingles nobody can understand what you are going through.  I had shingles twice in my mouth, the last episode was 3 weeks ago, so im just beginning to feel a bit better, but it takes time and im always shattered.  Ive been having shingles regularly for 10 years, first was after a car accident and i was slow to get anti virals as i didnt know what the spots were.  Know every time i get stressed or run down a couple of weeks later i get shingles. I too have 'family' issues and that doesnt help.  The most daunting thing about shingles is that it will never go away and that is hard to deal with.I just take it one day at a time or else it becomes overwhelming, Look after yourself and you are definitely not crazy!!!   Take care Lisax
    Report / Delete Reply
    • Posted

      Thank you Lisa well you are one of the few to have them in your mouth most people think that it has to be something else.  I just tell them I have had them long enough I know what it is, the stress level for me only gets worse but I do have faith that it is going to get better I have to make that happen.  As for any little thing I hear you when I get a cold they flare if I don t get enough rest they flare and on and on so we have to take care of ourselves my husband is super supportive of me which helps but most people don't see how sick I am because I hide it when I can.  Stay healthy and we can converse any time!  Thanks for your support
      Report / Delete Reply
    • Posted

      I'm glad I saw your post. I have been going crazy. I felll very hard while roller skating 3 years ago and landed on my hip. The pain has been there since, and last fall, out of nowhere, I got what looked like bruising areas. Went to dermatologist and he said shingles, (no bumps, just weird red/purple rash with slightly raised area). It's still there, (April 2017) and still hurts. I also notice that after stressful situations, the area flares up..sometimes it gets lighter but never goes away. Currently, it's red/purple again. I get some mild itching but try to leave it alone. I am 54 and in good health. I have always exercised and eaten pretty good, so I have no idea what brought it on. I am wondering if anyone has used Geranium oils on their shingles. I am going to go that route next. I have used Peppermint, Tea Tree, and even some prescription creams but don't like possible side effects of meds. Thank you.

      Report / Delete Reply
  • Posted

    Hi Laura,

    As you have the vesicles-blisters in the ear, mouth, and throat, with the severe pain, it sounds like you have shingles or Herpes Zoster Oticus or Ramsay Hunt Syndrome. The next time you get an attack I strongly suggest going to your physician and obtain

    1. an antiviral, 2. a strong opioid,

    3. a Lidocaine swish, gargle, and spit for your mouth sores. Obtain enough antivirals so that when you feel the malaise and presymptoms prior to the rash, start the antivirals. They reduce the intensity of the pain and symptoms tremendously, as well as the duration of the illness. I get Ramsay Hunt every 2-4 weeks for the last 19 years and know how agonizing the pain is.

    I hope this helps. I am so sorry you are suffering. Please let us know if there is anything else that you need help with.

    Merry Juliana

    Report / Delete Reply
    • Posted

      Thank you Merry I will definitely talk to my doctor I am allergic to lidocaine so can't do that either but my dentist recommended a rinse from Colgate that does help.  Thank you for the information, and keep in touch.  Appreciate the help and support!!  
      Report / Delete Reply
  • Posted

    Oh Lauren, I feel for you, are you on any medication? Ur right stress brings this on , love them like them or hate them family is family and will always be a bit stressful. Best thing is to rest, but somewhere on here somebody got a viral type meditation and it seems to work for them I am on gabapetin and antitripline now 2 and 1/2 years. I got it in my head, didn't get medication soon enough and nerve endings in my head our damaged, I keep asking my GP is this it, is this as good as it gets? Sometimes it gets to you, but I guess we just get on with it. Like u I thot I was the only one to suffer , but there are loads, I am sorry to say, I wish I could fix them all. Sleep and rest best thing .you take care H. 
    Report / Delete Reply
    • Posted

      Thank you, the people on here makes me feel much better not that they to suffer but that I have others with this because most of the people I know look at me like I am crazy so thanks for supporting me I do try to take bette care of myself and I am going to look for more alternatives too god bless you and stay healthy. Thanks again for your kind comments. Stay in touch
      Report / Delete Reply
  • Posted

    I know what you mean Laura. I did go through same thing having recurring episodes of shingles for 5 months. I came down with a severe case of impetigo last March which very likely ruined my immune system and that was followed by shingles attacking my back and palm of left hand, the latter was repeated 4 times within a span of 4 months.

    I started reading about how to improve my immune system and what is effective against harpes virus and I came out with a list. I went to a nutrition store and bought as much of those items as they were available among them L-Lysine (taking 4 to 6 capsules a day), immune support AOR, Vitamins D, B12, Bcomplex, Multi Vitamines, Zinc, Anti-Viral herbal extract and Calcium and Magnesium. I also added orange and peach and salad to my diet in the evening and continue with milk and cheese for breakfast and meat for dinner. Well it has been two months now without shingles and also the wide area of rash that I had on my belly (my doctor said it was a sign of weak immune system 3 months ago) is completely gone and I feel stronger too.

    I thought I share all above as I think that for those who are immunocompetent (no underlying problem like HIV, Cancer, or autoimmune disorders) and have frequent shingles attack, it may be possible to break the vicious cycle by going on above diet. Just may be.

    Kevin from Canada

    Report / Delete Reply
    • Posted

      You are welcome. I forgot to mention about green tea, spinach and yogurt all inexpensive, plenty available in markets and proven to boost immune system significantly. Good luck.
      Report / Delete Reply
    • Posted

      Hello Kevin:  Thank you again for your help.  I do eat alot of yogart since it is cold and I can slide it down, I am not to big on green tea but I drink tea all the time it is all I drink have never been a soda drinker so it is simple for me I will give the green tea a try and see if it helps!!  Again thank you for your help.
      Report / Delete Reply
  • Posted

    Read your post and I can sympathize with the family issues. Seems to be the root of a lot of my stress. I saw a nutritionist when I was first diagnosed at the age of 22 and since then I have gotten them on and off again. He recommended I take lysine B 12 sublingual vitamin C and it seems to really always help me. Thought I would share this with you.
    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums 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 forums 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.

newnav-down newnav-up