Frustrated with shingles

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Alright guys well this post may be long but I wanted to tell my whole story from start to finish. I'm Katie in 28 years old and I currently run and etsy shop so I can spend some time with my husband because he is in the navy and it's just easier to be my own boss. My husband is deployed now so I have been super stressed. So.... Around December 18th I went to the doctor for some jaw discomfort. My dog had smacked me in the face and really tweaked my jaw out. So the nice doctor had prescribed me some pain meds which were the lowest dose of Norco. Those helped so much for my jaw pain and I was so excited that I was gonna be able to eat prime rib for Christmas dinner!!! On December 22nd my sister and I had watched a zombie movie which is our favorite genre of movie and we were walking around the house saying hopefully you don't catch the zombie. Well that evening I got a double ear ache. I couldn't hear anything. Which just happened to be the first zombie symptom ( I know I'm not turning into a zombie. It's just a really funny coincidence and I need all he laughter I can get right now) then I lost my voice and my throats was sore for like 3 hours. I was feeling really under the weather but I had no temp. The next day and the 23rd I woke up and my ears were throbbing so I figured I had a ear infection. I then took off my rob and I noticed a rash on the left side of my lower back. It didn't hurt and maybe because I was taking pain meds all ready but it was just there. I laughed it off and said I was getting the zombie and that was that. The 24 came and I was still taking the pain meds for my jaw but my ears were just killing me. I just knew it had to be a double ear infection but since it was the day before Christmas no doctors would be open and I didn't want to go to the emergency room for that. I always get them so I can deal with them. Christmas came and I wasn't even able to eat prime rib because I just didn't feel good and I didn't want to be around friends and family because I was afraid I was going to give them the cold or flu or whatever I had. The 26th was Monday and most doctors offices are still closed so I went on Tuesday the 27th. I wasn't able to see my normal doctor but they got me into there sister clinic. The doctor was very nice and I really want him to be my new primary doctor. He looks like Jake Gyllenhaal so that's a plus lol. Well he looked into my ears and I figured he was just gonna say well you have an ear infection and I was going to be on my way home. But he then told me your ears look fine. I was like SERIOUSLY! I then told him about this weird rash that was about the size of the bottom of a coke can. He looked at it and asked me a few questions like is it painful etc. He then said well I guess you have had chicken poxs as a kid because you have shingles. I was in shock because shingles is always advertised as a elderly problem. I never would have thought that I could get it at such a young age. And since it didn't hurt I really didn't think much of it. I just figured I would show him because I was there. He said I probably didn't feel the pain because of the pain meds I was taking. So I went to the doctor for an ear infection and came out with having shingles. Fun stuff. I was kinda scarred because I wasn't able to get on he antiviral meds because I waiters to long but I blame that on Christmas and it was just a rash with no pain. No big deal right. Well I was terrified because shingles gets the bad rep for being super painful, and you just feel like death. Since I live alone right now because my husband is deployed I didn't have anyone to take care of me I guess you could say. But the doctor did say with all of my symptoms that it was shingles and that's what they do. Great right. Well after hours of reasearch I got super scarred and I went to the emergency room because I wanted something so I wouldn't get post pain. They gave me a steroid. I forgot what it was called. I went and saw the cute doctor again and he said no do not take those. He even apologized for me having to go to the er. He refilled my pain med prescription for me and then put me on amitriptylin. With the pain meds I felt ok. It didn't take the pain all the way away but I was able to function enough to work on my etsy shop. Days went by and they blistered over and scanned and everything. On December 8th I had to take 2 of my pain meds because the pain was bad!!! I googled it to make sure it was ok to take 2 and since I was taking the smallest dose it was fine. Each day the rash started getting better but the pain was getting worse. As I take more pain meds it keeps the pain at bay but it's still there. So on January 13th I went and saw my normal doctor. When she came in she was like welcome to the shingles club 😑 I told her I'm sorry that I couldn't see her about it but she didn't have any openings. So we are discussing it and I tell her about the pain I'm in. I told her I only have a few of my pain meds left and it doesn't seem like it's getting any better. She said since the rash is almost gone that ibprofin should help. I asked her about the lidocaine patches and she said she doesn't prescribe them because there so expensive. So today is January 14th and I went to urgent care. I am trying not to take my pain meds because I want to save them for when I am just in horrible pain. The doctor looked at my rash and he came me some gabapentin and he said he would prescribe me the lidocaine patches but yes they are expensive. I go to the pharmacy and thankfully tricare covered most of it. They were suppose to be 280 bucks but I only had to pay 10. So the doctor said that when I take the gabapentin that the pain should go away immediately. I put a patch on which burned and didn't help much and then I took my first doesnto hopefully being pain free. I don't want to take pain meds because I know they are addicting so I was really hopeful of these new meds. Well it's 8 hours later and the patch didn't do much and the gabapentin did nothing!!! Ugh. So I broke down and I took a pain med. I went to bed and the pain woke me up. Lately I have only been sleeping 3-4 hours a night because the pain is so bad that it wakes me up. I'm exhausted and frustrated. I don't know what to do. Should I go to the er??? I mean it's just pain and I will survive but it's horrible and I'm in tears because I think the doctors are just looking at me like in a drug seeker. I ge tthat I'm young but this shingles is no freaking joke!!! I just want to feel better but nothing has helped except for the pain medicine. I want these new meds to work but after looking them up a lot of people say it's normal for gabapentin to not work like that. So guys that is my story of my shingles. I would never wish this upon anyone. I'm just miserable. I'm getting nauseous all the time now because of the pain and the lack of sleep. What would you do in my situation. I don't want to go to the er for them to just tell me to take ibprofin. Trust me I am taking it. Please any advice would be greatly appreciated. I don't want to live with this pain for the rest of my life with the doctors just telling me to take ibprofin. Obvisouly they haven't had shingles and don't understand the pain and depression that can come from it. Sorry for such a long story but I just need some advice. Thank you guys!!!

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  • Posted

    I don't think there's a magic cure for shingles.  Various things seem to help different people.  I'm in week nine and can say that the pain is better but definitely not gone.  I've tried a variety of ointments with lidocaine  and other products over the past two months.  Lyrica has helped me sleep at night.  Early on, I used Domeboro and it did soothe the pain.  I am hoping that within this month that shingles will be a thing of the past for me.  My worst patch is on my left hand and thumb.  It doesn't look bad at all now but it can hurt terribly.  I feel lucky that it didn't affect another area of my body.  As you know, it's awful!

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  • Posted

    You're not alone, know that. I joined "The Club" about two months ago and found this group, and they've been incredible.  I also had a delayed diagnosis, as we were traveling, and as you discovered, it's not only old people with humungous rashes! Don't worry about the long post, you should see my first one! But I'm going to cut to the chase on a few of your comments.

    Correct, steroids don't help. Gabapentin will, but you start at a low dose (check with your doctor) and work up over days or weeks. I had someone tell me that even that low dose would help with the pain, it did only slightly, so don't give up on it.Yes, at first it may not seem to help much, but it will. I started at 300 mg a day (normally it's higher, but I was concerned about side effects so my doctor agreed). I'm not on 2200 mgs a day, but had been on 2400 for several weeks. There's also some research that it can help prevent PHN, for a quick explanation, shingles which lasts MUCH longer than the weeks to a few months most of us have. You likely will have drowsiness and confusion, so be careful. I'm very lucky my hubby's semi-retired, so he does the driving. But you won't feel like doing much of anything for at least a few days. Accept that, do whatever it takes to be comfortable, hot or cold packs or showers, rest, sleep, stay in your jammies. You are SICK, so let you body heal.

    I also considered the pain patch.I found several problems with these, most of which was the expense. You can also get them OTC at 4% lidocoaine at a much lower cost FYI for others. It's also difficult to put on yourself if it's in a bad place. Mine were on my back.  I use the 4% lidocaine pain cream as the patches can NOT be used continuously, it's too much for the body, heed the warnings. Cream is absorbed differently, so it can be appllied 3 times to 4 times a day.

    I also use Tylenol every 4 hours, which helps and I'm already on a prescription NSAID, which helps me (think Aleve or Advil, but much higher). Some people think it helps, others not, but for me it does.

    Yes, I too had nausea for that first week, which I don't think is common, but does happen (sisters from a different mister??) I never could decide if the shingles causes depression, those of us who have had problems with depression are prone to shingles or it's such a LOUSY (I cleaned up my phrase there) situation that any one would get depressed!

    As far as your last few lines, as sympathetic as many people are, only someone who's had shingles can understand. There are variations in severity and parts of the body affected, some have itchiness, others (like me) never have it, you can be young or old, immune-compromised or not, and yes, you can get it again. If someone gets the anti-virals, they may have almost none of the pain and problems we do, so some people say, it's not that bad, but the person they knew got the antivirals. We're not in that group.

    Keep reading these forums, you'll learn a lot and find, as i said, there are others here to help you.

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  • Posted

    Dear Katiebug!

    I have recurrent Herpes Zoster-Shingles, so consider me a master at this disease. First, you are not over reacting at the pain. The pain is excruciating and agonizing. Every time I have a recurrence, I take oxycodone. In fact, I have an episode right now!

    The other meds they throw at you are for chronic pain, and for alleviating the Neurogenic pain. At this time you have acute pain and need strong Opioids. While the other meds can help in alleviating the burning pain, you need probably oxycodone and an anti-emetic for the nausea.

    Find a doctor who knows about the terrible pain of shingles, and advocate for yourself. Perhaps your sister can go with you for support.

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    • Posted

      Dear Katiebug,

      I am so sorry you have this, as I know how agonizing this is. I sometimes reply in sections as my internet is sketchy.

      I am a Nurse Practitioner in the States and have Herpes Zoster-Shingles every three to five weeks for the past twenty years in my right ear and twice in my right eye.

      Often, individuals start with symptoms such as headaches, fever, chills and sweating, aches and pains, fatigue, photophobia, malaise, and exhaustion.

      Physicians can be abysmally ignorant regarding this disease, the diagnosis, treatment, and management. Because of the overdoses in the US and UK, they have cut back on prescribing narcotics, to the detriment of patients like you and me.

      When you feel better, Katybug, please send me a link to your Etsy site. I believe in supporting our military and independent merchants. Also, especially, my patients 💞.

      My parents were in the Battle of the Bulge as doctor and nurse on a US Army hospital train. Please let me know how else I can help you..

      Best wishes

      Merry Juliana

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    • Posted

      Oh and since I'm not on a computer it is a pain to get my etsy shop link. But if you go to etsy and type in kawaiicreations143 my shop will pull up. It's still a huge work in progress as I'm still trying to get all new photos uploaded and fix the older photos I have. But since I have had shingles it's been hard to do much of anything. Thank you again merry. I really appreciate it

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    • Posted

      Katiebug,

      Believe me, I understand more than you know! I have a 20 year old furbaby, so I get it with caring for your fur family. Your sense of humor is delightful!

      Yours,

      Merry Juliana

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    • Posted

      Well tomorrow I head to the doctor again. I have been taking the gabapentin since the 14th and I have slept more then a dead person I think. My sister told me I was even sleep walking and talking which is scary because I could really hurt myself. Maybe it's because I'm in such a deep sleep but I'm getting way to much because of the medicine. I seriouslynsleep like 12 plus hours a night and then I have to take a nap in the day because of the gabapentin. I can't be sleeping that much because I do have to adult lol. I have my first craft show in 3 weeks and I haven't been able to make anything because all I do is sleep. It's stressing me out. How do I tell my doctor that. The low dose pain meds that he was giving me helped and they didn't make me sleepy. But I do know that there narcotics and some people just seek them out. I'm defiantly not one of those people but they helped so much and that's why I want them. I want to be able to work and go to my first craft show. I was so excited because they actually seemed me out and offered me a spot. It's super exciting but if I don't create anything I will not be able to go. Which would really suck. Considering I would only be taking the gabapentin at night since it does help me sleep do you think it would be ok to ask for the pain meds for just the day. Because I'm only on a low does of gaba. 300 my 3 times a day. It is scary that it makes me sleep walk and I warned my roommate already so he will lock his door so I don't like scare the crap out of him or what not. But I'm afraid I'm gonna hurt myself if do something stupid. I don't know. It's just frustrating. I'm over these shingles. They have over stayed there welcome. Time to leave lol.

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    • Posted

      Let your doctor help you make the decision. Shingles itself causes exhaustion, so that's part of it. You're in the early stages so I think it may get better. Could the pain meds also be making you drowsy? There is also another medication, Lyrica which acts in a similar way to Gab, they both deal with the nerve impulses and affect the brain. Talk to you doctor.

      I'm on a much higher dose of Gab, also had the fatigue and drowsiness, which did lessen eventually, but it's a very individualized condition so I'm not going to make any suggestions here. In my case, i'm in my third month of this, so I understand your frustation.

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    • Posted

      Katie,

      The gabapentin makes one sleepy, but the shingles causes fatigue and exhaustion, as well. The Opioids in high doses certainly can, but you are aware as they are usually short acting. Discuss this with the physician and tell him you can't function normally like this. Tell him you feel unsafe on this dose of gabapentin and were doing better with the Norco, at least in the beginning. Ask if you can use the gabapentin at night, and Norco in the day. Are you still on the amytryptylline?

      Good luck!

      Merry Juliana

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    • Posted

      Well I'm exhausted. I'm running on like 2 hours of sleep. I went to see the doc and he sad that we have basically tried everything so our next step would be to go to a specialist and get a shot straight into the nerves on my back..... scary. He said it takes a few weeks for the referral to process so he gave me some norco to bridge me over till then. He also lowered my dosage of the gabapentin from 300 down to 100mg. Hopefully that helps. I told him I would only be taking the norco in the morning so I can function during the day. I don't think he is to worried about it. But I'm terrified of needles..... in my back. I'm gonna cry!!!

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    • Posted

      Katie,

      The needles in your back, if they are what I am thinking, are a good thing. First, they numb the area around the area of the injection, then when the needle is inserted, it feels like pressure only, no pain...Your doctor is thinking outside the box...Smarter than many out there...He listened to you, so that is great news...

      The fatigue and exhaustion and insomnia drive people crazy, when you combine it with the pain. I am so sorry you are going through this. I know it is difficult when your husband is deployed. I am glad that he gave you some Norco.

      Best regards

      Merry Juliana

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    • Posted

      I am so nervous about the needle in my back thing. It's gonna take about a month for the referral to go through and then I can make an appointment. I'm just hoping that the pain will go away on it's own. I'm only on week 3 of shingles so there is still hope that I can go away!!! But I am glad that you knew what I was talking about. It's just a scary thing to go through. And my husband feels so bad because he can't be here with me but that's the military life and I wouldn't change it for the world. Only 4 more months till he is home safe and sound!!!

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    • Posted

      Katie,

      I've had the needle in my back and it worked wonders for the pain. It's called an epidural or a nerve block. It wasn't for the shingles, but for severe back pain. I have recommended this procedure to several individuals, but no one has ever had a physician recommend this. I think your doctor is great to think of this from the start.

      I am glad he listened to you, as well.

      Best wishes

      Merry Juliana

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    • Posted

      Well this is great news. Now does this like numb you so you don't feel like skin to skin contact or does it just make the nerve pain go away. I don't want to be numb so I can't feel anything haha. My doctor was also very hesitant on prescribing me more pain meds but I looked him in the eye and said I'm seriously loosing my mind and I just can't take it anymore. It's nice to know that he trusted me. He also said that the office he works at doesn't normally prescribe narcotice because most of the patients are on medi-cal. Not sure what he was insuinating but again I was very thankful that he understood that I wasn't messing around.

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    • Posted

      Dear Katie,

      This would be subject to the expertise of the physician administering the injection, but should only numb the area of the shingles. Pain management physicians are often anesthesiologists who have skilled training doing nerve blocks. Others are interventional radiologists. They use fluoroscopy to guide the needle into the space. They also have a huge amount of training. Where do you live?

      Best regards

      Merry Juliana

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    • Posted

      Katie, I'd ask more information from the doctor as far as what he's considering. "Needle to the back" is a layman's phrase, are they consideriing a nerve block? If so there are several different types or locations for that. Or is it an injection of a steroid? Those are not as effective for shingles. Is it acupuncture or dry needling, another procedure sometimes used with pain. There seem to be mixed results about how a nerve block would help with shingles. Also, is this this still an active case of shingles or PHN?  No matter what, you still have possibly a month to get through before that.

      I hope they're able to manage your pain. The first few weeks are extremely difficult. I'm sorry you can't take a higher dose of the Gab as it takes a while to effectively block the nerve pain, or at least make it more tolerable. What about Lyrica? Have you even asked your pharmacist? Mine had several suggestions which were helpful. Some my doctor followed, others we didn't, but at least I learned more about the condition and treatment.

      The anxious, crazy, "I can't take this anymore!" is overwhelming, but try and get through one hour, then a day, and there will be improvement.  As I wrote, I have it in my back and chest (minimal lesions but a lof ot pain) and use Lidocaine pain cream, extra-strength Tylenol, Gabapentin and a prescription anti-inflammatory which I've been on for years. The anti-inflammatory does seem to help me, but not everyone agrees.

      There may be certain times of the day when the pain is worse, for me it's about 5:00, as that's when the meds all need to be re-administered (two are every 4 hours, one every 6 hours, one every 12 hours). Understanding why it's worse may help. Also, nerve pain and recovery is not a straight path, there are good and bad days. Sometimes I know it's because I lifted or reached wrong, other times, it just happens. The depression is part of the not-knowing and frustration of this. Again, it happens. But we're here for you.

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    • Posted

      They would be doing nerve blocking injections. I'm coming up on 4 weeks of shingles. The rash isn't there anymore but you can still see the spots where it was at. I wouldn't say that they are scars yet but who knows. I've been trying to just use the lidocaine patches and Tylenol or ibprofin. But I only have to take half of a pain med with the ibprofin and it helps a lot. And I only take that in the morning. In the evening I will try to tough it out but if it gets to bad I take another dose which isn't that bad considering I'm only taking a full pill a day. Then at night I will take the gabapentin and take off the patch and go to bed. I seem to have a routine down now but I do have good days and I do have horrible days. Another thing I have noticed is that my shingles rash is right about my left but cheak on m lower back. Right next to my spine kinda. Every single morning I wake up and my lower back hurts so much. It feels like when I sleep I sleep with a pillow arching my back but I don't do that. I don't know if this is related to shingles but it take me about a hour to be able to sit up normally without my back hurting. That's one of the main reason the pain meds are helping because my lower back/spine hurt really bad in the morning. I literally feel like I'm 100 years old right now lol. But this to shall pass. I am still able to work on my clay creations and get ready for my craft show. I am not able to attend to one in February but they had invited me to go in May so I can have more time. Which is awesome because now I do not have to stress over it as much anymore. Shingles suck. Especially when you have to go threw it alone. At least I have my fur babies to help me out. My boxer rufio knows when I'm hurting and he will just come lay next to me and put his head on my lap and sit next to me till the meds kick in or till I feel better. He is my support system right now and I couldn't do it without him. Fur babies are awesome ?

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    • Posted

      Katiebug,

      The nerve block will be helpful. Where in California do you live? I used to live in San Diego!

      You are correct in saying this to shall pass.

      My dogs and cats have always been great comforts when I have been sick. Jupiter my twenty year old tabby cat is also a great earthquake early warning system. He used to jump on my on my sternum (where it hurts,) wake me up a couple of minutes before an earthquake, and then safely hide with his littermate. He did not wish to lose the person who feeds him! LOL....Our dog Mikie, a cross between a Collie and a Sheltie, knew when we were sick home from school. The days we were extending our stay a little more and no longer sick, she knew and didn't hang around anymore. I am surprised my mother never caught on, as she was a Registered Nurse...

      Fur babies are wonderful...I am glad you have yours and your sister...

      Merry Juliana

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    • Posted

      I live in San Diego!!! I've lived here my whole life. The weather is prettt crazy right now. I'm gonna miss it when we have to move in 2018. Maybe we know each other lol

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    • Posted

      There are excellent interventional radiologists who do nerve blocks in San Diego! My two nerve blocks helped me each for a year for severe unremitting back pain.

      When you mentioned your husband was deployed in the Navy, I thought you might be in San Diego. I lived there 17 years in La Jolla.

      I miss my friends there and the weather... I moved back East in December 2009.

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    • Posted

      Trust me the weather sucks right now. Flash flood warning, the freakin wind is crazy blowing everything down. I feel like a tornado is gonna come and take my house to OZ Hahahaha. But normally it's beautiful. But EXPENSIVE!!! we won't find out where we're moving for another year so let's hope it's somewhere nice like here. And the nerve shots last that long!?! Well that's great news. Hopefully it doesn't have to come to that but we shall see. I'm just about on week 4 so hopefully it will just go away to the point where it's completely gone or where I can handle it with no issues.

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