Frustrated with shingles
Posted , 9 users are following.
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!!!
2 likes, 59 replies
Merry19451 Katiebug619
Posted
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.
Katiebug619 Merry19451
Posted
Hey merry!!! Thank you guys for responding. I woke up to so many responses I was almost in tears because you guys actually understand. The gabapentin I'm on is 300mg 3 times a day. I took 2 yesterday. The first time I took one I passed out for a few hours but then I woke back up in pain. I managed to take another around 5 am and I didn't wake up till 4 pm. So I got a lot of sleep. Probably because I haven't been sleeping much since I have got them. The gabapentin made me so nauseous and dizzy. I already suffer from vertigo so luckily I have a ton of nausea meds. It also gave me the worst dry mouth ever!!! I don't think I can take any in the day so I will just have to stick to taking them before I go to bed. I need to somewhat be able to function because I have 2 fur babies to take care of and I can't just sleep 24/7. So when I woke up today I immediately took a nausea and pain pill because I wasn't feeling to great. The pain was horrible and I was super dizzy which was probable what was causing the nausea. I'm still super tired but I knew I had to try and function. I am gonna call my cute ( he was the one who has mostly been taking care of my shingles) doctor tomorrow and see if he can get me in asap. But this pain sucks and since the rash is almost gone and all that are left look like scars I don't think they believe that it actually hurts. And it's also not so much the pain that gets to me. I mean yes the pain sucks but it's a domino affect. If I wasn't in pain I wouldn't be depressed because I just feel like crap. The pain causes me to be nauseas and tired and irritable. And I can't sleep when I am in pain. And just to let everyone know I'm normally a very happy person so when I say depressed I mean tha I am basically frustrated to all hell and I'm sad that I have to go through this. Like I said I am a very happy person and I love life. I guess this is just a big hiccup in my life. My husband said he wishes he could be here to take care of me and I told him he is lucky he isn't here because he would probably divorce me hahahah. I just get a little cranky when I hurt is all. Thank you for replying. It really makes me feel like I'm not alone in this.
babs99203 Katiebug619
Posted
It doesn't say it, but take the gab with your meal, not on an empty stomach. I learned that the hard way. Read the info on the gab, dizziness is a side effect, but if you can stick with it. Pain meds can cause nasty side effects too. Personally, I can't take them.
Yes, beyond the pain, the feeling helpless creates a bad spiral. All your going thru is tied in with this danger virus, but it will get better, just not as fast as you'd like.
tara73708 Katiebug619
Posted
Merry19451 tara73708
Posted
Sorry for your suffering. Most physicians are abysmally ignorant regarding Herpes Zoster-Shingles. The Herpes Zoster-Shingles virus is circulating in your body causing the pain underneath your rash, but also the diffuse widespread body pain. You also can have other symptoms such as headache, fever, chills and sweating, malaise, exhaustion, and fatigue, and photophobia. Please know that the exhaustion and fatigue and malaise can continue for weeks and months after the rash is long gone.
Hopefully, he placed you on antivirals and analgesics immediately. You need to rest and sleep.
I am a Nurse Practitioner in the US and have had Herpes Zoster-Shingles every three to five weeks for the past twenty years and twice in my right eye. Please let me know how I can help you.
Best wishes
Merry Juliana
Goodwater_Betty tara73708
Posted
I haven't heard of the pain being everywhere either so I'm glad they are checking out other things. It does seem like the medical community is not very tuned in to how horrible the pain can be. I am now in week eleven but am much better than I was in weeks two through four. My pain is pretty much localized to my left hand--a very bad spot on the palm which has healed over but is extremely sensitive to the touch and my thumb. The other fingers have never been involved at all but I did have some bad spots all up my arm all the way to my shoulder. These have now gone away for the most part although I can see where some of them once were. Thankfully, I can now sleep at night so if you do have shingles I believe I can offer hope that it's not going to be unbearable forever. I hope yiur doctor can figure out what is going on to cause so much pain all over your body. Hopefully, you have some medications for pain and maybe a lydocaine based ointment as well.
tara73708 Merry19451
Posted
The e.r. placed me on the viral and gave me 20 oxycodones. My primary just sent me on my way, so frustrating. I am in pain and very emotional. I really appreciate this forum! I appreciate knowing that I am not crazy! Thank you!
Shoe_Lady tara73708
Posted
Merry19451 tara73708
Posted
This DNA virus has literally attacked your central nervous system is your brain and spinal cord, and often individuals become anxious, emotional, and depressed, and even more so when physicians marginalize them. You are understood here. We have been down this road many times and know what you are going through. You are Not crazy...Just sick!!!!
Hugs
Merry Juliana
babs99203 tara73708
Posted
I hate to say "welcome" as you really wish you weren't here right? But we've all been or ARE there (as my case right now) so you'll find support and answers here. There are many uninformed medical professionals out there, so it's good they offered the anti-virals. They will help, another drug often used is Gabapentin (Neurontin) or Lyrica. It acts on the nerves and helps to block the pain signals.
My shingles were both on my back and my front, near the breast, but were barely noticeable. However, the pain was very intense. I also had pain on the opposite side of my back, like a mirror image at times, or lower than the nerves. The concept is generally that the pain follow the nerve, either down or around, but it's supposed to be on one side. Personally, I found using OTC Lidocaine pain cream on the most affected nerve is helpful and Tylenol every 4 hours in addition to the Gabapentin. Do whatever it takes to feel a little relief. It WILL get better in a few days, and if you rest, and hopefully sleep, that helps a lot too. Is there one particular place the pain is worse? Or where is the rash?
My two cents are, you have a virus in specific nerves that will be the most affected (which most doctors know), but you're also just plain sick! It's easy to focus on the rash or main areas and forget that all of you is uncomfortable. We believe you and we're here for you.
tara73708 babs99203
Posted
My rash is on the right side of my back and is not very big. When the pain started it was cramping in my legs I couldn't hold myself up, then it moved up into my whole upper body up into my neck. Now the pain just takes turns every where at some points even my teeth hurt. Lots of headaches! I do have lidocaine! Thank you for the suggestion! I am so glad I decided to look for a forum. I usually am a happy go lucky person and try not to complain. It is so nice to have people reach out, show compassion,and share their own stories. Really has made my spirit feel better!
babs99203 tara73708
Posted
I'll defer to others about the anatomy of nerves, but maybe this is following a major one. A friend had it in his sciatic nerve,so it went from his back, down the leg to his foot. It generally helped me to learn as ,I had as I could about shingles. At times it's discouraging, but it helped me come to terms with what I was facing. It can be an in invisible condition, and we're used to illnesses or injuries healing in a few days. That doesn't happen with this, but it WILL get better. Keep reading here, it helps.
babs99203
Posted
Oops! I was trying to say, "helped me to learn as much as I could".
Katiebug619 tara73708
Posted
Hey Tara!!!! I'm sorry that you have these horrible shingles. I'm on week 4 now and the pain is finally subsiding. I hate it when doctors think that your not really in pain because your not finically in tears or on the floor crying. If that was the case then all of us would be in the hospital. The pain is bad but we have to put on a good face and try and get through it. Pain meds just make things easier. When I went to my doctor he told me this is the last time he was giving me pain meds for this. I was kinda p*ssed that he said that because he had only prescribed it to me 2 weeks earlier. It wasn't like this was my 5th prescription for pain meds. And I'm on the lowest dose of them to so I got kinda offended by how he had said it because what if the pain is still excruitatung in a few weeks ya know. It thankfully the lower dose of gabapentin 100mg is helping. It's still making me sleep like sleeping beauty but I am able to function more then I was when I was on 300 mg. Also the prescription grade lidocaine patches are amazing. I tried the store bought ones and even though they are only 1 percent lower then the prescription ones they seem to work so much better. FYI the prescription ones are around 280 bucks. I have tricare for my health insurance so I only had to pay 10 bucks. Just see if your doctor will write you the script and then you can take it to the pharmacy and see how much it will cost. I'm very thankful mine did that for me because I would of gone crazy by now. It doesn't take away all of the pain but for me it took away the burning feeling. Also do not put any cream or patches on the rash when it is still "active". It has to be basically gone before you can apply it or else it will irritate the rash. Don't want to make it worse then it has to be lol. Hopefully you were able to get on the medication in the first few days and you won't have to have the pain afterwards. Mine if finally starting to go away after 4 weeks. Hopefully it will be completely gone in a few more!!! I hope you feel better soon. Things will get better!!!! These ladies here really helped me out through the rough time with my shingles.
babs99203 Katiebug619
Posted
Good news that it's getting better. I'm sorry the Gab didn't help you more. If he is dropping you from the pain meds, what about Lyrica? It works better for some people than Gab. We considered it, but as I was on a really high dose of Gab 800 mg 3 X a day, it would take a while to switch over, yours would be much easier. It is possible (sorry to tell you) that this could still be multiple weeks or months worth of treatment so if you can get something else to help, that would be terrific. HOWEVER, each case is different but, keep it in mind.
How long do you wear the patches and does the relief last after they're off? We have a very high deductible, so I opted for the OTC patches, but as you can only wear them for a limited time, the pain would come back. I just use the cream.
Katiebug619 babs99203
Posted
I think the gabapentin is helping. He said that in a few weeks to switch back to the 300 mg because I should be used to the 100mg. And for the patches you wear them for 12 hours and then off for 12 hours. It kinda burns alittle when first applied but then about 20 minutes later all of my burning sensation is gone. It still feels like I have a. Dry deep ache but I can deal with that. Once I take the patches off I am completely numb for a few hours. I always have a red square where the patche was but it goes away in about a half hour. I wish they didn't have to be so expensive so everyone could use them 😡 Oh and these patches really stick on. The otc counter ones would fall off in a hour or so for me. I typically try and put my patch on 12 hours before I go to bed. So that way I can take it off right before bed time and it's easier for me to fall asleep. Sometimes I forget and I put it on right when I wake up but I'm still numb for the most part when I go to bed.