Down but not out

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I would describe the pain from the rash as feeling like you have been sprayed with acid.Exhaustion is the other main symptom for me, despite being 71 I am very fit but this recent shingles episode has me completely floored. I was too late starting the antibiotics and have had to rely on painkillers. I'm 2 weeks into it and hoping I will be more or less recoverd in another 2. What surprises me is the number of threads where people have had shingles on a recurring basis as I thought it was almost always a single episode.

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  • Posted

    Roger,

    I am glad you are able, hopefully, to control the pain with analgesics. Where is the rash.

    I was 44 years old when I had my first episode in my right ear. The pain emanated deep from my head for three weeks before the rash appeared on my outer ear. I saw two ENT physicians who thought I was narcotic seeking. I was literally out of my mind with pain. The third one believed me and diagnosed me at 21 days. I have recurrent Herpes Zoster-Shingles every three to five weeks for the last 20 years in my right ear. I start the antivirals at the first hint of the symptoms. I feel that had I been properly diagnosed with Herpes Zoster-Shingles the first time and started on antivirals, I would not have been getting recurrent Herpes Zoster-Shingles.

    Best Wishes to you.

    Let me know if you have any questions.

    Merry Juliana

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    • Posted

      I want to thank you Merry for the information you provide to those of us that have been struck out of the blue with this devastating disorder. I can't tell you enough how important it is to have real medical knowledge from someone who has navigated these murky waters. I was diagnosed with shingles 2/19/16. I was sent home without antiviral meds and with 15 mild pain pills. 2 days later I ended up in the emergency room with excruciating pain out of controll. Thank god I went because it was there I was told that you need to start the antiviral within two days. They prescribed me a stronger pain med to be taken more frequently. When that ran out I called my regular doc to get a refill and I was made to feel that it was unusual that I needed more and it is how they said it that prompted me to change doctors. Well here it is June and I am dealing with electric buzzing frequently and itching and yes new blisters ( very small) but mostly bumps that itch and are painfull. I am exhausted and very sick of this. My new doctor prescribed a antidepressant which I can't take because they cause heart arrhythmia. She also prescribed a lidocaine patch for itching, however not while blisters are open. She didn't prescribe pain med. I am surprised as to how uneducated these doctors are on shingles. I asked get if there was anything I could do about the exhaustion and she didn't know. I am disgusted as to how I have been treated. I am 59 yrs old and a little understanding but most of all a doctor that is educated as to what is going on with my body would have been helpful. When I was diagnosed my doctor almost said it in a laughing way. I insisted on a back exray anyways because the pain was so intense. She made it seem as though it was just shingles! Just shingles? Shingles is got to be the worst thing I have gone thru and I have had two c-sections ect. Just shingles? I want to let her know shingles is nothing to laugh about. Thank you Merry for being there for all of us..🌻
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    • Posted

      Barbara,

      I apologize on behalf of health care professionals. I never ever was that way, even as a young nurse in training in 1971. Neither are my identical twin, a nursing professor or my three sisters, another nurse and two physicians. We went into thest health professional to help people, and alleviate suffering. Shingles is one of the

      most painful conditions known to mankind. I found childbirth easier and less painful, even with a pitocin drip. I try to be helpful and supportive as I was on my own when I was going through it, with no analgesics for the first episode and no antivirals. I do appreciate your kind words soooooo much. You are very sweet. I wish I could help you more. Regarding the fatigue, I rest a lot more than I used to and let things slide. As a ferociously independent female, this is difficult for me to do, but my health depends on it.

      Let me know how I can help!

      All my best!

      Merry Juliana

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    • Posted

      I am thankful for all of your replies....yes, you are a gift...helping so many ...you may never really know how many lives you have touched just by sharing your story. 

      Thank you,

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    • Posted

      Dear Ann,

      What a kind sentiment you sent. Thank you for expressing your thanks. I try to respond to almost everyone going through their first episode and anyone needing help and support.

      Best Wishes

      Merry Juliana

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  • Posted

    Roger,

    I am glad you are able, hopefully, to control the pain with analgesics. Where is the rash.

    I was 44 years old when I had my first episode in my right ear. The pain emanated deep from my head for three weeks before the rash appeared on my outer ear. I saw two ENT physicians who thought I was narcotic seeking. I was literally out of my mind with pain. The third one believed me and diagnosed me at 21 days. I have recurrent Herpes Zoster-Shingles every three to five weeks for the last 20 years in my right ear. I start the antivirals at the first hint of the symptoms. I feel that had I been properly diagnosed with Herpes Zoster-Shingles the first time and started on antivirals, I would not have been getting recurrent Herpes Zoster-Shingles.

    Best Wishes to you.

    Let me know if you have any questions.

    Merry Juliana

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    • Posted

      Hi Merry,

      I want to thank you again for your willingness to help as we all navigate these murky waters...sounds like you came from a family of truly dedicated health professionals.

      Just want to update you on my condition. I am at 4.5 months and the fatigue seems worse. It feels more like a weakness throughout my entire body, so much so that I have difficulty walking at times, particularly toward the end of the day. It's like an imbalance and dizziness

      combined with a full fuzzy feeling inside my head, definitely effects cognition.

      I went to my grandson's baseball game last evening and had to leave early b/c I felt faint, as I often do when I push myself. I am not comfortable driving when I feel this way.

      The day before I literally slept 16 hrs. No one understands why I'm not well and I don't feel like explaining. This site is a godsend b/c no one in my life understands what I'm going through. I am grateful to God for the absence of pain ... I continue L-Lysine 500mg daily.

      Remembering how you explained this disease, and reading others' comments, I just do what I can and let the rest go.

      Sure hope you are having a respite from this miserable condition...can't imagine how distressing it must be to have "painful episodes" every few weeks. Thanks for finding that silver lining and reaching out to others; you are a blessing indeed.

      Peace and blessings,

      Joyce

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    • Posted

      Dear Joyce,

      Thank you for your kind words. I am indeed going through another episode currently, but this too shall pass. You are correct regarding the fatigue. I go to sleep and when I wake up is up to my body, not the alarm clock. I find it rewarding reaching out to others and helping others. I see you do that as well. All my best, as well.

      Merry Juliana

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  • Posted

    i am sorry you got those nasty things. i was at the docs the day after they first appeared. they were not fun but thankfully mine only felt like a really bad sunburn. so i was really grateful but the exhuastion continues here at the 6mo mark. prayerfully yours will subside quicklysmile
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  • Posted

    I'm with you roger! Exhaustion is a main symptom for me. Along with stiffness in my neck and mild headache.
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  • Posted

    Roger,

    I'm a young 78 ... was diagnosed 1/30/16...the rash wasn't too bad, but the pain was horrible for 2+ months. I was prescribed acyclovir as soon as I noticed the rash, also gabapentin, prednisone and naproxen. I had to call for a stronger pain med, was prescribed an iPod, but nothing killed the excruciating pain! When my meds ran out I started L-Lysene500mg daily and I've been pain free about 2 months. The post shingles symptoms are debilitating...extreme fatigue, weakness, exhaustion, etc. Sure hope you don't have them! Apparently, everyone is effected differently.

    Hope you're feeling better every day!

    Peace and blessings,

    Joyce

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