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So scared.

Posted , 15 users are following.

linda-22
linda-22

I've been down with shingles for 13 weeks, I'm scared that's it's not ever going to go away I'm on medication that is not doing me any good at all the pain and the burning it's just too much I see my doctor in a week there has to sum relief, my pain is underarm, shoulder blade, and goes right to my breast, I can't tell you how much pain I'm in, And it's the beginning of summre and believe me it's hot , I'm trying to stay as cool as I can, so if there is any advise out there please share, thanks

1 like, 22 replies

22 Replies

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  • yogi12221
    yogi12221 linda-22

    Posted

    I know how you feel.  It will get better.  Sometimes it just takes a long time.  Others will be by to help you more than I can.  Just know that you are not alone.
  • Ochio1234
    Ochio1234 linda-22

    Posted

    I know how you feel dear. I was on nasty pain medications ... the opioids. I found a great neurologist and he has prescribed high dose Gabapentin. I take 800mg. three times a day. It really helps me with the pain. It is an old seizure medication which most people tolerate really well. It makes sense that a medication to control overactive nerves in a seizure would also calm overactive nerves for pain. I’m wishing you well. ❤️ Nancy
  • lisa65143
    lisa65143 linda-22

    Posted

    Get opoids, I know it sounds drastic

    try to gauge your pain.so you don’t need more and more. Take when neeeded.

    you need relief

    try medical Mary that’s good to.

    and also rest

    thats why you need pain relief 

    you can’t sleep when you’re in pain

    we are all suffering msny of us over 5 years like me

    wr are just very unlucky 

    • Ochio1234
      Ochio1234 lisa65143

      Posted

      IF you can find a doctor who will prescribe opioids. This crusade against opioids is outrageous. They’re trying to keep them away from addicts but what about people who really need them? This pain is over the top extreme! 
    • lisa65143
      lisa65143 Ochio1234

      Posted

      That’s true.

      if you live in a major metro area then see a top notch neurologist.

      you have to go to a knwledgeable sophitihicatef doctor who does not want too see us writhe in pain,

       

  • lisa65143
    lisa65143 linda-22

    Posted

    Also wear a hat and cover yrself

    the summer is bad for us

    dont make it worse

  • deborah72510
    deborah72510 linda-22

    Posted

    Mine is on my left side and identical spots. I had this since Jan 17, 2017 with no relief. I am on 800mg, 3 times a day of gabapentin.  Doctors tell me there is nothing else they can do.  It may go away or I could have it the rest of my life.  So, I feel your pain.
    • lorray64454
      lorray64454 deborah72510

      Posted

      Deborah I had to reach out to you because I feel so bad for you. How long have you had this? Did you say over a year? My heart goes out to you. I am truly so sorry you have been going through this for such a long time.

      I was diagnosed with Shingles but without the rash 5 weeks ago. I have terrible nerve pain along with burning and prickly pain.  I just wanted to tell you how sorry I am for what you are going through.  I pray you get relief and some help for this. Lorray 💕

  • Jeannie74
    Jeannie74 linda-22

    Posted

    Oh Linda..... how well I understand!  First of all let me tell you this..... 

    Don’t be scared!!!! You WILL get past this!!  I was down for 31/2 months!!

    I too felt like it would never go away, that neither life nor I would ever be the same again!  But, it is and I am too!

    The pain is unbearable at times and for me was not relieved except with hydrocodone. I took the least amount possible and saved the narcotic for bedtime if I possibly could.  I also took Advil and Tylenol during the day.

    Secondly, I used frozen compresses on the affected sights which brought much relief. These are gel packs which can be purchased at any drugstore and kept in freezer. If you can’t get those, then use ice in a plastic bag covered in a towel.

    Thirdly, I bought the over the counter 

    4% Lidocaine gel and used that frequently. It is a small bottle and doesn’t last long, but it does numb the area for a time.

    Fourthly,  I got in the shower frequently and found the very warm water soothing and I stayed as long as I could stand. This sounds like a contradiction given the ice packs. I cannot explain why it helped .... but for me it worked.

    Fifthly, I tried to rest as much as possible. I tried not to worry about what wasn’t getting done. My husband helped as much as he could since he has his own health issues and we are 75 &. 78. 

    I crocheted lying down and I prayed a lot! You will get better.... I promise!

    I hope these suggestions help you. I will be praying for you.

    Jeannie

    • linda-22
      linda-22 Jeannie74

      Posted

      bless you, really I will for sure act on your suggestions. again thank-you
  • joseph34465
    joseph34465 linda-22

    Posted

    Linda I had Shingles all most 2 years ago and I am still dealing with the post pain. Hope you don't get that. You have to deal with the pain but you may need something to deal with depression. I never thought that I would ever get better. But you will Doctors are just learning but they are getting better at dealing with the hole problem Good Luck

  • Woodys4926
    Woodys4926 linda-22

    Posted

    Try using L- Lysine 1000 mg and Echinacea 400 mg it really helped me and you can get it at the vitamin store or any health food store
  • r._f._09034
    r._f._09034 linda-22

    Posted

    Hi Linda. Sorry you are hurting, friend. Yes, shingles is a scary thing. First of all...you've come to the right place. There are many wonderful, loving people on this forum and like Yogi just told you, YOU ARE NOT ALONE. We hear you and we've all been where you are right now. Now, first things first...

    Sweetie, it sounds like you may be on the wrong meds. You need to go back and see your doctor or A doctor, asap.

    You wrote you see your doctor in a week. I would call your doctor back and tell them this is an emergent, because it is.

    Shingles is very painful but also can leave permanent damage to the nerves, if left untreated. If you've been taking antivirals for 13 weeks, with NO relief, then you are possibly on the wrong anti-viral.

    Also, pain WILL worsen your shingles and lengthen the time you have them. Unfortunately, over the counter meds are not going to help you much, so save your kidneys and liver the trouble. For shingles, you do need opioids. To protect yourself, do NOT self-medicate. My husband or another family member gives me the pain meds as needed. This was MY choice because it was the safe choice. Last thing you need is to face addiction after the shingles have healed.

    Have you had the new shingles vaccine "Shingrix", yet? If not, I strongly urge you to get the vaccine. Its a two-dose vaccine that was just approved this past January 2018. Ask for it by name. Your doctor will need to write you a prescription for it. It has a 97% success rate and also helps with PHN, the pain from nerve damage after the shingles are healed.

    Again, I am so very sorry you are hurting. Please see your doctor as soon as you can. Waiting another week, with you in this much pain, is going to make it worse and put you at higher risk for PHN.

    Take care and hope you feel better.

    ~Rhonda

  • lisa65143
    lisa65143 linda-22

    Posted

    Make sure you wear sun screen 

    a large hat

    covet yourself

    stay out of the sun

    i don’t like it very much anyway

    an umbrella 

    protect yr self

    the sun will hurt you believe me

  • Merry19451
    Merry19451 linda-22

    Posted

    Dear Linda,

    I am so sorry you are dealing with this.

    You have Post Herpetic Neuralgia PHN, by now. Your physician needs to place you on a cocktail of medications that help you.

    Please know it can be treated, but you must advocate for yourself, and it may require more than one medication.

    Topical Medications:

    Solarcaine with Aloe contains Lidocaine to numb the nerve endings, apply topically.

    Ointment or cream with Lidocaine, apply topically.

    Lyrica or Gabapentin, titration to maximize effects.

    Add Venlafaxine or Cymbalta, SNRIs also titrate up to maximize effects.

    Cold compresses and or ice packs can help soothe the area, as well.

    We all understand the amount of excruciating pain you are in. The amount of exertion you do increases the amount of pain. If you can rest and sleep, please do so. Your body has taken a huge hit with this disease, and you need to be kind to yourself.

    Getting better is a process. It doesn't happen overnight with this disease, ever.

    Best Regards

    Merry Juliana

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