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

Posted , 14 users are following.

yogi12221
yogi12221

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.

3 likes, 42 replies

42 Replies

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  • yogi12221
    yogi12221

    Posted

    I had another awful day today.  So tired, can't hardly keep my eyes open yet cannot sleep.  Having  difficulty seeing.  Head alternating pain with the rest of the nonstop snap, crackle, pops, tingles, tickles, worms going on. This is just so awful.  A lot of surface area is still numb.  I swear I'm not going to get better for weeks.  Last week the eye doctor said, one more week, which was yesterday.  OMG, no that didn't happen at all.  I am just as miserable now as I was then.  I have the chills, then the sweats, I'm hungry, lonely, and miserable.  I swear it seems like I will never get better.  I broke down this afternoon to the mom who has been carting my kids around this week.  I am struggling so bad with all of this.

    Thanks for listening.

    • andrea43257
      andrea43257 yogi12221

      Posted

      I was miserable for over a month.  Was pretty much flat on my back for 2 whole weeks of that.  It was a good 12 weeks before I started to regain my strength and energy.  I’m at 17 weeks now.  My daytime energy is pretty much back, although if I have a busy day I am wiped out by about 4 pm.  Still sleeping 10+ hours each night.  My shingles were primarily in my mouth (tongue, palate, throat).  I’m still dealing with altered taste buds.  All this to say that it’s going to take time.  You need to rest as much as you can.
    • Merry19451
      Merry19451 yogi12221

      Posted

      Yogi,

      What pain killers including dosage and frequency were you prescribed? You need to take them around the clock. I know the agonizing pain. If it isn't a strong Opioid, plus Gabapentin, and you don't just rest and sleep, you feel much worse.

      Merry Juliana

  • yogi12221
    yogi12221

    Posted

    Does anyone have any idea how long this will last?  I'm about 3 weeks into it, still in a lot of pain (face/forehead/scalp/eye).  The scabs are healing and decreasing, the numbness seems to be decreasing but I still have a lot of it.  My eye is not normal to see out of (cornea is clear).  I'm really tired, cannot function normally at all, and have had about 5 bad days in a row now.  I suspect I won't start being normal until the numbness goes away but I am just guessing at that.  I guess I just need to hear some hope.

    Thank you so much.

    • andrea43257
      andrea43257 yogi12221

      Posted

      I didn’t start regaining my energy for 12 weeks.  It’s a long illness.  Still sleeping 10+ hours a night, 4 months later.
    • Merry19451
      Merry19451 yogi12221

      Posted

      Yogi,

      Everyone is so different regarding when all the symptoms go away. When shingles occurs on the face and scalp, and includes the eye, a very complex structure, it takes much longer to heal. No one can state with certainty that you will be free a symptoms in three weeks. I would suggest the following approach, having had to recover from many illnesses such as recurrent Herpes Zoster-Shingles, two strokes, cancer, back surgery with major complications, neck surgery, etc.

      Compare how you are now to when you first had Shingles and compare the Progress you are making... The little steps lead to bigger steps. These are the signs of improvement. If you are still in significant pain, ask the Physician for a strong analgesic. It is their duty to alleviate your suffering.

      Empower yourself to get the care you deserve. You will feel better for having done so. You can ask nicely and get the desired results.

      Also, cultivate le Petit Bonheur,

      or A Little Happiness. Pamper Yourself or spoil yourself a little when you feel this miserable and depressed. Do things that make you happy, be it listening to certain music, certain foods, etc.

      Best Wishes

      Merry Juliana

  • clive63734
    clive63734 yogi12221

    Posted

    In Dec 2016 I also had shingles on my head face and the back of my eye .and the only thing that helped was 1 Ibubrofen and 2 Paractamols every 4 hour and it did make life more bearable since then I still have an itchy eye but I use E45Anti itch cream which helps

    Hope this helps

    Clive

  • yogi12221
    yogi12221

    Posted

    Thanks for your replies, Everyone.  I am still miserable every day.  Such pain, still have all of the numbness and my eye is off center, can't focus.

    • julie89512
      julie89512 yogi12221

      Posted

      Hi 

      I’m 17 days in on having face shingles.

      A&E said I had gingivitis and put me on antibiotics.

      saw my gp on the following Monday and he saw me and said straight away shingles so I missed out on 3 days of the antiviral tablets when they could have been doing their job.

      he referred me to the eye specialist and he gave me a second dose of antiviral 

      and the same in eye drops. Check up next week 

      my spots have cleared up now but left a few deep holes.

      what symptoms I have now are

      1. A constant headache

      2. Fatigue 

      3. Sore mouth

      4. Swelling of my left cheek

      5. Stye on my left lower eye lid and very red and sore

      6. Numbness all around my eye, temple, 

      7. A feeling something is crawling under my cheek and still very lumpy 

      8. Blurred vision in my left eye

      think that’s it.

      i haven’t felt such pain before. Felt like I had boiling water pour on my face,then gone over with a cheese grater. 

      Hope to god we never have to go through this again.

      i don’t know when I will get back to work, I think it was the stress of work that caused mine, over worked and under paid. 

      Hope you are having a better day today 

  • julie89512
    julie89512 yogi12221

    Posted

    Hi how are you doing are you feeling any better now

    Im 18 days now, and I still feel tired, my face is still swollen.

    my eye is red and sore. 

    Face is very tender and still Carnt feel my teeth and gums

    see the eye specialist again next week. 

    feeling utterly fed up. 

     

    • yogi12221
      yogi12221 julie89512

      Posted

      Hi Julie,

      OMG, no, I don't feel better and I am very sad to hear you don't either.  I looked at my paperwork and was diagnosed 2/20/18.  I felt awful about one week prior but didn't know what I had other than an infected tooth at the time which has now broken off at the gum line.  Will tend to that if I ever get better from the shingles.

      So I still have intense pain especially behind my right eye.  My right eye is not centered but constantly off to the right so I can't focus on anything close up.  I am numb in my face/eyelid/nose/forehead on the right side.  I thought this was decreasing but am not sure now.  I am still fatigued.  I have tried varying my diet (adding more veggies and fruits, eliminating grains, etc., and nothing seems to have any noticeable impact.

      The one thing that did seem to help a little was sleeping on my "bad" side and also wearing a fabric headband to kind of compress that side of my face/scalp.  

      I think this is just going to be a one day at a time type thing with a lengthy recovery.  I just hope for a full recovery for us all.  The pain can be so intense for me sometimes.  

      Keep posting and we can help each other through all of this.

    • julie89512
      julie89512 yogi12221

      Posted

      Hi Yogi.

      sorry just looking though this shingles sight and havnt had notification 

      that you’ve asked me a question.

      i had my second eye appointment and she said everything seems settled and want to see me in 2 months just to make sure there isn’t any flare up.

      i feel so tired still sleep all night and I’m up for 2 hours and need to go lay down again. And the itching is driving me nuts. I’m still off work been 4 weeks nearly since i first went to A&E. 

      How are you doing now, hope your on the mend 

      Sorry for not replying sooner. 

    • yogi12221
      yogi12221 julie89512

      Posted

      Oh my gosh, no worries, Julie.  I still can't quite figure out this message board either.  Not sure when replies come in or where they are.

      Glad to hear your eye is settled but sorry to hear that the rest of it is still going on for you.

      We'll get thru this together, somehow.

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