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
Katiebug619
Posted
Alright guys it's been just about 2 months since I had first gotten shingles. I finally got a pain management referral but by the time I got it they weren't really hurting anymore. I finally got used to taking the gabapentin and it wouldn't make me sleepy anymore so I figured I would be fine and I could go days without taking anything. I was so relieved that it was done and over with. WELL..... last week I had came down with the flu. Well I figured it was the flue because everyone in my house was basically sick. I was just super tired and alittle nauseated. No big deal. NyQuil to the rescue. The flu took its course and 6 days later I was back to my normal self. No let's fast forward to today. I just got over the flue a few days ago and this morning around 6 am I went to take the trash outside. Out of nowhere I get this very familiar pain. The same exact spot where I had my shingles previously started to hurt again. It was weird because I actually took my gabapentin last night. So I took 800mg of ibprofin and hoped for the best. Well 2 months ago when I got shingles it was around my period. Same exact issue now. I looked in the mirror and I can see tiny little bumps forming in the same spot!!! Is that even possible. Seeing as it's Saturday and I can't get to the doctor till at least Monday what the heck do I do. Maybe I'm just thinking to much into it and freaking out. Maybe I'm just seeing the tiny little bumps. Maybe the flu I had wasn't the flu and was the beginning symptoms of them coming back. I'm 28 years old and not only have I had shingles once but I might have them again In the same spot just 2 months after my first outbreak. Does it have anything to do with me starting my period. I'm already a difficult person to be around when Aunt Flo comes to town but to add shingles to the mix.... these times I'm thankful that my husband is deployed because I would hate for him to have to deal with me right now. So frustrated. Is this normal!?!?
babs99203 Katiebug619
Posted
I can only answer part of this but I'd say seek out a doctor as it is possible it's new shingles. I got one case on my back (almost invisible, so we didn't know, I just had back and chest pain) almost 3 weeks later it was on my breast (this was back in October and November). That's when I started the classic pain etc. of shingles. I'll always wonder if I should have had the anti-virals that second time. I sure which I had suggested it.
The other issue is stopping Gab cold-turkcy, you can NOT stop Gab quickly, you can have real problems, so I don't know if the "flu" was becase of that or if it was the shingles, as both can cause nausea. I hope Merry can respond to this. I never found out if get the anti-virals would have helped me, as we assumed it was part of the same out-break. But you also need to be within 72 hours, and I'm not sure when that would be.
Are you starting up on the Gab? You probably should, but again, ask a doctor as you need to titrate (slowly change the dose) back up.
babs99203
Posted
I also realized that my "tiny bumps" have never gone away, so is it possible this is the same thing you always had? Or is it definitely new? That's one of the hardest things about this danged illness, there are so many unknowns and you feel so helpless, right?
Merry19451 Katiebug619
Posted
It certainly sounds like recurrent Herpes Zoster-Shingles. Please go to an Urgent Care preferably today or tomorrow and get placed on antivirals and analgesics immediately! I forget where you live, but it is much better if you go today....I do remember you, sweet Katie, with the Etsy Shop!
I am the Nurse Practitioner with the recurrent Herpes Zoster-Shingles every three to five weeks in my right ear for twenty years. No, your recurrent episode is not normal, but the first priority is getting you on the antiviral immediately. Talk to you soon, Katiebug!
Merry Juliana
Katiebug619 Merry19451
Posted
Well it looks like it is shingles again. In the same spot.... I am a night owl so when I just woke up the rash is difently coming back and the pain hurts so much more then I did last time. I called my doctor and I am waiting for a call back since it's the after hours doctor. I am seriously gonna cry. How can they come back this soon especially in the same spot. Ugh I have a feeling I will be going to the er tonight because the pain is just horrible and I'm going to go crazy soon.
Merry19451 Katiebug619
Posted
I know how terrible these episodes are, but the best response to the illness is dealing with it quickly. Can your sister go with you to the ER? A positive action plan usually helps me get in control when I thought I had no control. This time you have the knowledge, you know what to expect, and you know what to do. . .
Best wishes...
Merry Juliana
Katiebug619 Merry19451
Posted
Well I just got back from the er. Fastest er visit of my life. The doctor asked if I was stressed and I said well today has sucked because I got shingles again and my car won't start so that's adding to the stress. Literally 15 minutes after I got to the er I was walking out with my medicine. They have me the anti viral and Tylenol with codeine. Then all of the pharmacy are closed!!! They say open 24 hours but they arnt. Tonight is gonna be a long night. Then I get home and my roommates dog chewed up the carpet. Such a bad day lol. But I will survive!!!!
Merry19451 Katiebug619
Posted
Sorry about your experience....
Did you get the medication today?
Merry Juliana
Shoe_Lady Katiebug619
Posted
Michelle
Merry19451 Shoe_Lady
Posted
Shoe Lady...
It is scientifically proven that Herpes Simplex flares occur more frequently during and pre/post menstrual cycle. I tried a literature search regarding Herpes Zoster-Shingles and menstruation, and nothing came up.. I would believe the anecdotal evidence of the individuals on this site, in conjunction with the Simplex flares.
Fondly
Merry Juliana
Shoe_Lady Merry19451
Posted
Well, there you go!! They probably have not included shingles in that literature because you can only get shingles once😜
Merry19451 Shoe_Lady
Posted
Michelle,
Shoe Lady,
Exactly, because none of us has documented recurrent Shingles and it is strictly a disease of post menopausal women.... Ha Ha Ha...While going through the "literature," I found papers of questionable statistical reliability, stating they doubted the higher incidence of recurring Herpes Zoster-Shingles due to the lack of testing with PCR, etc...The arrogance was astounding...(Not really)
Fondly
Merry Juliana
Meanwhile
In the woods...I've had back to back episodes and pyelonephritis...But I'm sure it is all in my head...
Katiebug619 Merry19451
Posted
It's bad enough we already have to deal with periods but to through shingles in with the mix just stinks. My shingles happen to be on my lower back and it intensifies my cramps so badly. But thankfully the anti viral and tinge Tylenol with Codeine is helping. Only 43 more pills to take!!!! Ugh haha
Merry19451 Katiebug619
Posted
I was wondering how you are doing...
At least the codeine should help the cramping...I am not trying to be flip...
Merry Juliana
Katiebug619 Merry19451
Posted
Merry how are you!! It feels like you are my shingles buddy lol. Well this month has been hectic to day the least. The shingle came and went away pretty fast thankfully and my psychiatrist did say that my ADHD could be a factor in why I have gotten them twice in 2 months. Well now it's 3 times because there back... same spot. Exactly 1 month later and again it's right when I'm about to start my period.... what gives with that. Ugh. Gotta call my doctor and make another appointment. I feel like I'm gonna end up in a medical book or something. I was reading that shingles can correlate with your menstrual because I guess your immune system is kinda out of whack. I don't know. It's just weird. I woke up this morning fine and then all of a sudden I feel that oh so familiar pain.... I go and look and I can see little tiny blisters coming back.... ugh!!!! As if having your period isn't bad enough!!!
Merry19451 Katiebug619
Posted
Herpes Zoster-Shingles certainly can be triggered by your menstrual cycle...Not great news for you! Here is a thought... You might be able to pre-empt the start of the shingles by asking your physician if you can start either Valcyclovir or Famciclovir a week before the first day of your next period. Another option to consider is to go on birth control pills in which you get your period only four times a year, if birth control pills are not contraindicated. Then, when you know you are going to have your period, start the Antivirals a week before your period....
I would seriously pursue those options.
Best regards
Loved hearing from you, although not about the bad news!❣
Merry Juliana
Katiebug619 Merry19451
Posted
So I went to the doctors and he was shocked that they had come back again. He said he has never heard of such a thing. I told him I was reading that some people will take acyclovir twice a day for reoccurring herpes or cold sores. Some people actually take them like that for shingles as well. He said he just wants to start me off on valtrex because the acyclovir worked but I hated having to take it 5 times a day and valtrex I only have to take 3 times a day. He also gave me a few pain meds because last time they only hurt for a few days. He also ordered some blood work to jut make sure that everything was fine. I had my blood work done about 5 months ago and everything was perfect so I doubt they will find anything there. I told my doctor I really don't want to end up in a medical book and we both just laughed. He said he was determined to figure out why this is happening because he is really interested in it. At least he is nice and knows that shingles suck and there painful. As for the birth control way. Unfortunetly I can't take that kind. I have to have a low dose birth control because if I don't then I get super dizzy. I'm actually just starting back on it in a few days. I tried to skip my period months back and it was horrible.... I skipped it but after a week of skipping it I had a 2 month long period 😑 Not worth it for me lol. But I might thankful there not as bad as the first time. I don't feel like a bus hit me. I just feel the pain where there at is all. And maybe alittle more tired then usual but nothing I can't handle for the most part. Here is to hoping hat they don't come back next month!!!! Gotta be optimistic!!! How are you doing??? Any reoccurrences with you?
Merry19451 Katiebug619
Posted
Katiebug,
Sorry my idea didn't work. I am glad your doctor is working with you! Acyclovir is difficult to take and not as effective.
I just had it every other week three times....Oh what fun! I don't have it now though and don't miss it one bit!
Merry Juliana
Katiebug619 Merry19451
Posted
Your idea was great. I wish I could skip my period for months at a time. That would be amazing lol. But hopefully since I am just starting my birth control in a few days maybe I won't get them anymore. I have been off them for about 5 months so maybe that's why I got them in the first place lol. And do you get them in the same spot every time or is it in a different spot.
Merry19451 Katiebug619
Posted
I get it in my right ear every three to five weeks for the past twenty years and twice in my right eye. Occasionally, every two weeks in my right ear when it is really bad, but when it is every five weeks, then the episode is more painful and longer.
Merry Juliana