shingles is driving me mad!

Posted , 11 users are following.

This is by far the worst illness I have ever had.

My body feels like it is on fire. Like I have burns. The rash has gone and my back has a scar. My doctor has given me gabapentin which made me poorly. I now have Pregabalin. Both medicines make me feel poorly.

I am at my wits end. I am trying to continue my job but even the Pregabalin makes me unable to drive. Walking makes me feel like I am going to fall. I just need this excruciating pain to go away.

How long does this devil disease last for ??

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15 Replies

  • Posted

     I had shingles in late September 2017 and I still suffering with the after affects of PHN . Mine were on my face and scalp. I take neurontin  and sleep with a lidocaine patch. My neurologist said there’s no timeframe for when it should and everybody’s different .
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  • Posted

    Hi Carol. I had shingles last July /17 and suffered with pain, exhaustion, burning pain, numbing and misery. I said it was the worst thing I had ever suffered in my life. I still suffer with PHN. I was prescribed pregabalin and I too found it made me sleepy but with time your body gets used to it. I found I was getting better and I weaned myself off three times a day beginning with the afternoon dose, then after a week weaned off the morning dose until I was off it all. After being off a couple of weeks o began having the burning and numbing tingling pain again. I’m back on the lowest dose of 50 mg twice a day . It does help and worth the sleepiness rather than the pain. The most important thing you can do now is get lots of rest, no stress and eat healthy. I take 2000 Vit D3 which helps to build your immune system, Vit B 12 for energy and depression, multivitamin, Lysine.. xstrenth tylenol when needed for pain. Wishing you a speedy recovery 
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  • Posted

    I'm on 4 weeks and still have nerve pain and get really tired but I'm pushing myself now to the max and notice if I keep busy it doesn't bother me that much

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  • Posted

    Also try supplements they really do work
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  • Posted

    We empathize w you completely. You came to the right place. We re w you.did you get sntivirals. You must.

    stay home and rest..

    we hate to tel, you that you may have to deal w this for s long time and hope you don’t get PHN like many of us.

    i recommend opoidd , find a sympathetic doctor, because the pain is something that no one can understand .

    i don’t agree that you will become an addict . Use them when you are crying and screaming out in pain, you need the relief.

     

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  • Posted

    Dear Carol,

    I empathize with your pain and disdain for this horrible disease. But I promise you it will get better!!  It takes time.... lots of time! It took me 31/2 months to finally turn the corner. Since then I am slowly but consistently moving forward. There is light at the end of the tunnel.

    Meanwhile, this nerve pain you are experiencing is horrendous. I could not have made it without hydrocodone which doctors prescribed limited amount two times. I took the least amount possible, but had I not I would have never slept and never made it through THE worst pain of my life. I could not take the gabapentin. I also used the 5% Lidocaine patch for one week with some relief. However, they were very expensive even with insurance so I used OTC 4% Lidocaine gel which was just as good. I also used ice packs almost constantly to numb the pain.  I ended up with PHN and after 5 months the area where the rash was is still numb. But give me numb instead of pain any day! I can live with that. So, I’ve said all this to tell you there is hope! There is life after shingles!  Take time to heal, take time off from work if you can. Rest as much as you can and pray a lot!  

    May God touch you with His healing hands as He did me!

    Jeannie

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    • Posted

      Hi Jeannie. Thank you for your kind words. It's comforting to know there is some hope, light at the end of the tunnel.

      I am taking cocodomol, amertryptoline and Pregabalin now. I am just like a zombie, a zombie that's on fire. The pain won't go. But with my medication I am knocked out at night.

      Take care and thank you Jeannie.

      Stay well

      Carol x

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    • Posted

      Carol, thank you for your kind words. I would concur with Merry about the pain medication as I told you in my previous response. Bottom line is you have to take what works for YOU!  We are all different in our response to pain as well as our response to medication. For me, the amytrptylline would have been too much. I had taken it previously and just could not function in the daytime. It is one thing to be relieved of your pain and quite another to just be 

      “ knocked out”.  So, you may need to rediscuss your med list with your current doctor or even find another doctor. This is NERVE pain; quite a different pain than other types of pain and you should not have to suffer if your current meds are not working!  

      Sometimes you really have to assert yourself with certain doctors. If what you are taking is not relieving the pain, then it is futile to continue with this combination of meds. In my area of the country, my right as a patient is to obtain pain relief!  I could only do that with Hydrocodone. I took the least amount possible and alternated with Advil and Tylenol. Also used the 4% Lidocaine gel frequently, ice packs constantly, and I crocheted lying down!! That was my therapy that helped my brain refocus away from pain. 

      Also, for me I prayed and thanked God for relieving my pain right in the middle of the worst of it!  I cried, I moaned and groaned, I walked the floor, I begged and pleaded and Believed that 

      “ this too shall pass”!!

      So, be encouraged because it will!!

      I am back where I was on December 1, 2017! My fatigue is now gone and the only lingering effect is the numbness where the rash was. But that’s ok!

      I will be praying for you! Trust God to bring you through this because HE is your healer!  

      Jeannie❣️

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  • Posted

    Carol,

    I am sorry you are going through this.

    Sorry for the delay in responding, but my server felt the site was bad.

    Where is the pain?

    I would go to a pain specialist who knows different modalities in treating

    Neurogenic pain. The drugs you are on can be highly sedating for some, but there are nerve blocks, topical medications, plus combinations of medications that can be used.

    I get recurrent Herpes Zoster-Shingles in my ear. I am on

    1. Venlafaxine an SSRI daily

    2. Topiramate daily, an anticonvulsant similar to Gabapentin, but doesn't sedate me. Really helps

    3. Auroguard Otic Drops- contains Benzocaine to numb the nerve endings topically as needed really helps!!!!!

    4. Oxycodone as needed for an acute episode

    Depending on the location of the pain, a pain specialist can do nerve ablations, etc.

    The pain can last months or years. Usually, you need a cocktail of medications that work together. A pain specialist is a better bet.

    Best Wishes

    Merry Juliana

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  • Posted

    i have been getting these for 30 years and now with lots of research i am find part of my problem as i have gotten older is our bodies need omega 3...i am making sure i do 2tables spoons of flax seed and now i am working on my gut health...do some research this disease is always there the medicinc we have to take to get us through epesodes make us feel bad...i am also into putting essentials oil on the blisters and it works so good...look up diet...
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  • Posted

    FYI... it seems we are all different and trying to relieve the symptoms of this awful stuff but I found that Excedrin really does let out my nerve pain within about 25 minutes are usually take one Excedrin sometimes two or other times I just take one Excedrin and 1/2 of a Tylenol and it really seems to help me it’s the only over-the-counter thing that I have found that lets up my pain at all. Prior to this I had taken up to four ibuprofen at one time and it didn’t seem to help at all but it really did bother my stomach so I gave that up. God bless you and I pray that things get better for each of us I’m trying to just go one day at a time I’m on week number three and it has been tough but I’m trying really hard to be patient and wait it out. Most of the things that I have read say that we should wait at least two months after having this before we get the vaccine and some recommendations from Canada say to wait one year after having an outbreak of shingles.
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