Shingles pain

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Hi. I’ve been in intense pain since last week. I was diagnosed with shingles. The head and neck pain i think is the worst. It feels like someone has them in a vice and is just cranking down on them. By nighttime I’m crying uncontrollably. I’ve been to the er and they threw a couple pain pills at me sent me home. I’m 31 years old but am immunocompromised. I have many different auto immune diseases. I’m getting married this November. I just feel like I’m losing my mind. I don’t know what to do anymore. I hate the hospital but am almost at the point to where I’d go be admitted now. My body can’t process sounds at times because the pain is so bad so i just get so angry and upset. 

0 likes, 13 replies

13 Replies

  • Posted

    Dear Laurenmarie,

    As you are immunocompromised, could you please tell me the condition? I would see your specialist that treats your diseases causing you to be immunocompromised and ask the specialist for Opioids and Neurontin, if not contraindicated. The opioid I would ask for is Oxycodone. The Neurontin needs to be titrated up in dose.

    Also, I would use ice on the area, and a lidocaine cream topically.

    Do you have the shingles in your ear or eye?

    Hopefully, you are not working and resting in a dark room.

    Best Wishes

    Merry Juliana

    • Posted

      Hi thank you so much for the reply. I have shingles on my scalp, face , neck, and in my ear as well. The pain is just so terrible. Sorry to keep saying it but it does hurt so bad. I’m crying right now in pain. I’m hoping my dr will prescribe me medication on Friday so i can last the weekend without having to go to the hospital. 
  • Posted

    Hi Laurenmarie I am truly so sorry for all the pain you are going through. My heart goes out to you. It sounds awful what you are experiencing. I pray it leaves your body soon. Congratulations on your engagement but it must be so hard planning all that and filling the way you do. I wish I had the magic words to say and to make you feel better. I have terrible nerve pain on my right side of my back since the first part of May. It doesn’t seem to want to go away. I am on Lyrica but it isn’t helping too much. I do gel cold packs a lot and spray cool/heat spray but not a lot of relief. I will keep you in my thoughts and prayers that you start to feel better real soon. I’m so sorry you are going through so much. Warm wishes and take care of yourself, Lorray💕🙏

  • Posted

    Hay its ok.the more you tense up the worse it will be you poor thing.i got mine on the thigh 22 months ago im still suffering what is post herpetic neuralgia i think thats the spelling anyway .burning tingling ice cold patches im going to yoga vinyasa and a homeopath thats helped .you are in very early days and its a nasty thing it does your head in have you been given a antiviral drug.if not ask your gp.it helps to be on this forum to know your not alone so hang in there .being rundown and stressed and having other immine issues hasnt helped you .but try to focus on whats ahead and your gorgeous wedding
  • Posted

    Dear Laurenmarie,

    Sorry friend that you are going through this but you are in the right place for answers and support. Many good people, in this forum, who have walked the path you are on now. Despite the dramatic rise in shingles cases, it is unfortunate that there still remains a large amount of misinformation out there. Shingles is an all together different creature than most other ailments and depending in the location of the body and the person, it can be difficult to treat and also diagnose. If possible, save yourself the aggravation of an ER visit and get actively and closely treated by a private physician you trust and who REALLY listens to you. One who ALSO trusts you when you say you are in pain and needing help, that they believe you and act quickly on your behalf. Your frustration is understandable as we've all been there but take comfort that you are not losing your mind, friend. Constant pain will get to the best of us. There are many lifestyle changes you will have to make, living with shingles. One of these being to avoid stress when possible. Planning a wedding will surely make this difficult. With shingles, pain meds are an unfortunate reality. Use great caution with these and NEVER self-medicate. Safer to allow someone you trust to help your narcotic pain meds for you. It may also be necessary for you to have your doctor put you on a daily regimen of low dose antiviral to take on a regular basis instead of only during an outbreak, especially during the planning phase of your upcoming wedding. I took Acyclovir 1000 mg/3 times a day, everyday, for several years and did have some relief but was still getting shingles every few days. Taking the wise advice of someone here on this forum, i had my doctor also add the anti-viral Famcyclovir and had almost immediate improvement (Thank you Merry Juliana...you're awesome)

    Again, there is alot of misinformation out there about shingles and this will make finding a physician more difficult but they ARE out there. Many people are still under the impression that shingles is a "geriatric" illness that rarely strikes more than once. Both are false. This outdated misinformation is leading to many physicians treating this dreadful disease with little care or concern because they simply do not understand.

    You are probably already aware that there is a new shingles vaccine that was just approved this past January 2018. It is a two dose vaccine called "Shingrix". I would strongly advise you to take this vaccine when you are shingle free. Ask for it by name because it is very new. This vaccine has a 97% success rate, which is huge for ANY non-live vaccine. It DOES work and i am living proof of its success, after having suffered with over 140 shingles outbreaks, over the course of 8 long years. I took my second dose on June 2nd and i can truly say it gave me my life back. It is recommended for people age 50 and older. But request your doctor to write the prescription for you anyway. Remember this is a CDC recommendation only and not written in stone. Your chain pharmacies like CVS and Walgreens will likely not give you the vaccine if you are under age 50 but find yourself a privately owned pharmacy. Most of them will give you the vaccine if your doctor writes the prescription.

    I wish you the very best, friend and hope you find relief soon. Congratulations on your upcoming wedding. This should be a beautiful time for you and it still can be. See your doctor soon. If your doctor is not a good listener, find another doctor. There are many different symptoms that accompany the shingles virus that will need to be addressed specifically. Narcotic meds are an unfortunate reality in treating shingles, so remember...DO NOT self-medicate. Once you have take that first pain pill, consider yourself NO LONGER qualified to judge when you should take the next one. We have already lost two many good people to opioid addiction. Amitriptyline is successful in treating the pain associated with shingles because it treats nerve pain specifically. OTC meds like Tylenol and Ibuprofen give little to no relief for shingle pain, so spare your liver and kidneys the stress of filtering it. Lidocaine topical ointment on an active rash can bring quick but temporary relief. For some sufferers, cold compresses give relief to head and neck pain, but for others, like myself, warm and hot compresses give the best relief. A micrwaved sock, filled halfway with rice, makes a great hot compress Hoping you will be feeling better soon. Take care friend

    ~Rhonda

    • Posted

      Cold presses have been helping me a lot. I have them on pretty much all day long. I’m very very responsible with the meds as i don’t want to hurt myself at all. They definitely don’t even take all the pain away but make it so I’m not screaming. It’s just crazy. I feel like I’m going nuts. 
  • Posted

    Hi Laurenmarie21, I got shingles almost 2 years ago. I had it on my left side of my face and scalp. My left eyebrow got the fealing back and I have a spot on my scalp that still herts, but not like it did when I first got it. You need to get the vaccine as soon as you get over the Shingles and if you have any pain in your eye go to the optometrist ASAP. I'm not a doctor but I went to several doctors from GP to doctor for infectious diseases. Right now I'm seeing a neurologist and they don't know very much about the disease. There's not much you can do to releave the pain but wait it out. Don't try to work through it because rest is one of the best things for it. If you start getting depressed get some antidepressants to get you some relief. Just remember it will get better. Good luck

  • Posted

    Unfortunately this is part of the worst case of shingles. Shingles can literally tear a person down, take away ability to function and that totally messes with your head. My advice to you is to get yourself a good  neurologist and get all the medication you need and then go to bed until this passes. Once you get thru this, you can get then anything. Look into the vaccine shingrex. The insurance co covered mine even tho I was under 50. Get a plan in your head how to handle this virus. This is usually stress related. Try your best to get a handle on that. Get an antidepressant if you have to. Get yourself what you need to survive this. And rest. You must get rest. We can beat this together with knowledge from each other. I wish you the best of luck. I’m always here should you need support. 
    • Posted

      Thank you so much for the support and love. I need all the help i can get right now. 
  • Posted

    I had internal shingles a year and a half ago. I was healthy before I got shingles. 

    I know exactly what you are talking about. 

    My shingles gave me  concussion symptoms you might have them check you for concussion symptoms. 

    I have been on anti viral off and on

    I am going to a integrative medical specialist now.  

    They are helping me feel better. 

    The  Gabapentin can be making you feel crazy also. 

    I tried taking it a few times it made me feel nuts also. 

    They are expensive

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