This is awful. Good and Bad Days. Am I the Only One?

Posted , 13 users are following.

I was diagnosed with shingles about 2 weeks ago.  I have it on my scalp, forehead, and eye.  My cornea is clear.  The pain prior to having been diagnosed was horrendous and I thought it was due to an infected tooth (which broke off about an hour ago).  The pain since being diagnosed has also been bad.  I have a good day and think I am getting better then I seem to slip backwards with a bad day and feel awful again, lots of pain and pressure in my head and eye and tired, etc.  I'm on the second round of the big blue pills and have eye drops.  I saw the eye specialist last week. I have pain and numbness though the numbness seems to be decreasing.  My eyelid still isn't back to normal.

This has just been an absolute mess and I wonder if anyone also has these good and bad days and if I'll ever be normal again?  I've read that this pain can go on long after the rash is gone.  I guess I just need some emotional support here, too.  Having a hard time functioning.

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  • Posted

    Hi Yogi, I am so sorry for your pain, and yes it is very normal for the virus to cause all those crazy fluctuations in your body. The best advice I can give you is on those “good” days treat yourself just the same as the bad days. LOTS of rest and extra good nutrition (smoothies with fruits and veggies only and raw juices). Take lysine and ester C. Herbal teas like Nettle and Lemom balm are helpful for nerve pain. If you do too much on the good days your chance of the virus taking charge again are very high. You have to be smarter than the virus. When it is giving you a break, help your body fight it even more. Rest, sleep, rest, sleep, nutrition, nutrition, nutrition!!! This is such a hard virus to beat, but you can beat it. The key is to help your body heal. I hope this helps. You are in my prayers❤️
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  • Posted

    I was diagnosed a little over a week ago, and like you had days of severe pain (mine is from my lower abdomen and wraps around to my lower spine) before being diagnosed, as the rash didn't appear right away.  I was lucky to have had a diagnosis within hours of the rash appearing so on those blue pills (acyclovir) right away.  My case seems to be healing pretty quickly.  I can say though, that I have had a couple of days when I started to feel much better only to wake up the following day feeling lousy again.  I wish you luck and really hope your pain doesn't last too long.  Hang in there.

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  • Posted

    I have found it to be a “one step forward, two steps back” illness. I am 17 weeks out now and was starting to feel really good, then found myself barely able to get out of bed this morning.  I slept over 11 hours straight.  I honestly don’t think I’ll ever be back to normal again.
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    • Posted

      Thank you, Andrea.  Gosh, 17 weeks out and still struggling?  I am so sorry.  I wonder if I'll ever be back to normal again, too.  I went to bed around 8 PM and slept on and off until 10: 30AM.  That's unheard of for me.  I am still trying to understand all of this.

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  • Posted

    Sounds like you’ve really been thru the mill. This is a terrible disease not much to help. I used lidocaine to numb the areas helped some and the anti virals never did. My doctor advised to get the new shingles vaccine it had lessons the time and duration of out breaks. It will be helpful for you once the rash is gone. Check with your doctor for more info. Get better soon! 

     

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  • Posted

    Hi Yogi,

    I am so sorry you are going through this! As the others have said, rest and sleep, with extra special nutrition is key to healing. The virus has attacked your entire body, so your symptoms are not "just" the agonizing pain and rash. You cannot power through this. If you overdo it one day, you pay for it the next several days.

    I do not know if your clinician has prescribed any analgesics for the pain, but those who have do not have good pain control the first month or more apt to get Post Herpetic Neuralgia PHN or recurrent episodes of Herpes Zoster-Shingles.

    If you are still have agonizing excruciating lancinating pain, please see your Physician and request a strong Opioid, plus Gabapentin. They work synergisticly to help with the pain.

    Cool compresses or ice help numb the pain.

    Hopefully, the Ophthalmologist prescribed prescription eye drops.

    Are you immunocompromised?

    I am a Nurse Practitioner in the States.

    I have had Herpes Zoster-Shingles in my right ear every three to five weeks for the past 21 years and twenty-one years and twice in my right eye..

    Best Wishes.

    Please let us know how we can help you...

    Merry Juliana

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  • Posted

    OMG, thanks so much for replying, Everyone.  I don't feel quite as stranded on the desert island now.  I, too, wonder if I'll ever be back to normal though I know I am still early in recovery as I still have scabs, numbness, and a "bad" eye/eyelid among other weird things.  I didn't know about this disease prior to getting it and am learning daily that it is a nightmare.  I don't have the excruciating pain that I had yesterday but a lot of pressure like someone is booring into my head and eye with their thumb or a tennis ball.  My hearing is better than it was so that part is healing.  I am trying to eat fresh fruits (and canned pears!) and veggies and meat and avoiding sugar, caffeine, wheat, etc.  It's a struggle to get through the day.  I had to close my business down.  I can barely take care of my kids (I'm an older mom).  This is just awful.

    Anyway, thanks again for replying.  I am going to go back now to see if I can reply individually to your posts.  I'm not sure how this message board works so am going to try.  Thank you, again, so much.

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  • Posted

    Oh my gosh I literally  joined this group to see if anyone has experience what I have gone through. It will be three weeks on Saturday that I have been struggling. Started with a headache and went to the ER since I've never had a migraine and they diagnosed me with a cluster headache and sent me home with pain killers, the pain got excruciatingly  worse and I was admitted to the hospital I kept telling them it was behind my left eye the pain was in there after four days in the hospital and going into shock that you finally were able to diagnose me with shingles. I spent eight days in the hospital and they released me since then I've been on the big blue pills three times a day , The gabapentin, and pain meds. I am 27 years old and truly have never experienced anything like this. The shingles were in my left cornea, and I got on eyedrops. The doctor I saw yesterday said my eye looks good, and that the shingles was no longer in Mayeye I questioned him because my left eye is still sealed shut and in so much pain. I saw my primary doctor this morning and she advised that shingles was just taking it's course, on my left side my four head is numb but out of this world itchy. I can't open my

    Left eye and I just have a horrible numbness going down my left side of my face. I was using ice to numb but 10 minutes ago moved to a heating pad, nothing is giving me relief. I've had to miss 3 weeks of work and finally looked into short term disability with my law firm as the doctor and the forums I read make it seem like this isn't going anywhere fast. I've had to cancel trips, miss out on weddings and have been in quarantine. 

    I'm so depressed and in pain in the worst place. I wish they were in my side or anywhere else other than my eye and face. I hope to god this 4th week turns things around for both of us.... any home remedies please send our way. Truly the worst virus ever..

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    • Posted

      OMG, Mckenzie, I hope you feel better soon.  I totally agree about this being on the face thing and how horrible it is.  Mine is on my right side--excruciating pain behind my right eye.  The pain has decreased for me a bit but is still there.  

      I've looked a fair amount online for alternative therapies, too.  I am going to try Lysine and Ester C if my spouse gets home in time to buy them for me.  I cannot drive or even see well right now.  I tried two essential oils of lavender and geranium in a cool compress.  I didn't find them helpful at all.  I haven't put any oily stuff on my scalp.  A lot of it is still numb.

      Keep posting.  We can help each other heal.

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  • Posted

    I don't know if I should ask this here or post a new thread so I'll ask it here first.  Does anyone ever get 100% over this disease?

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    • Posted

      Yogi,

      Many do, but on this site, the numbers are skewed, as many here have the notoriously more difficult cases with Post Herpetic Neuralgia PHN and/or recurrent episodes of Herpes Zoster-Shingles. If Shingles occurs on your Trigeminal Nerve, ie, your face, the risk increases for Post Herpetic Neuralgia PHN and or recurrent episodes of Herpes Zoster-Shingles as the facial structures are involved.

      Merry Juliana

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