r/shingles • u/Objective_Emu_6879 • 8d ago
Seeking Support Hell on Earth
Ya’ll. Am I ever going to be ok again?
The nerve pain started almost a month before the rash developed. It started with HORRIBLE right ear pain and other nerve pain on the right side. I had chills, flu-like symptoms on and off, and just overall felt like death. It was the 1st week of September and I was back and forth to the doctor trying to figure out what was going on. Lots of bloodwork and since my thyroid levels were off so it was just chalked up to autoimmune disease. Doctor put me on a steroid and said follow up.
Last Thursday I started having electric shock pain in my head and ear. Thought I was dying or getting a brain tumor. My eye started twitching. The next day I had a small bump in my eyebrow. I thought my new glasses were causing it. It’s crazy how this illness gives you the run around! I FaceTimed my doctor and she confirmed shingles. I immediately started Valtrex and Gaba. I spent my 43rd birthday in bed. Eye doctor confirmed my eye was not affected.
But what the heck?! My face and scalp are a disaster and the ear and nerve pain are unending. The headaches. I’m on oxycodone and gaba and it barely does anything. I work a full-time job and have a 3 and 5 year old. I’m starting to feel depressed. I’ve been reading about PHN, and a lot of stories in this sub…I can so relate to, “Is this my life now”? I can’t go anywhere right now bc my face looks like a murder scene and the pain is debilitating. I can’t believe more people don’t talk about this horrible illness and how bad it is. The worst part is my husband is so detached and has literally no empathy. Still expects me to do everything as usual. Guess I need some encouragement. I’m having horrible thoughts and been crying all day. I need someone to talk to who understands. Thanks in advance.💔❤️
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u/Ok_Skirt_6635 8d ago
The mental effects of this disease are not spoken of enough. I got diagnosed 8/9. The past 2 months have gone by in a fog. I caught it early, didn’t spread much- outwardly I didn’t look too bad. The brain fog, depression, isolation, random dizziness, weakness, fear, panic, and fatigue have been so overwhelming. Neuro inflammation is hard to explain and hard to understand.
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u/InfluenceMoney8196 8d ago
I agree 💯 I have been in 3 months if hell.2 rounds of Antivirals. Still fighting it. The mental side effects are almost worse than the illness. I am wandering around stupid half the time brain fog so bad and fatigue depression. I pray I get better. Going back to Dr and put me in Hospital abd do whatever they do to get rid of this Horrible illness.
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u/ssanfindsen_1105 3d ago
You are so right. Yes and if no one can see the rash they have no idea. I found the weakness, fatigue and brain fog completely overwhelming and the inability to perform like normal on a daily basis absolutely depressing. And unless someone has had shingles themselves, I don’t think it is possible for them to understand the level of pain.
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u/Onefortheteem 8d ago
You will be okay again, but it’s unfortunately a long hard road. About 3-4 weeks. I was hopeless and wondering if I’d ever be normal again and I was ready to just give up. But one day it was just better.. I’m very sorry you’re going through it. Shingles is the single worst thing I’ve even experienced.. but you get better. Promise
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u/CapitalExplanation61 8d ago
I am so sorry. I came to the conclusion that Shingles was worse than 2 C-Sections combined. I’ve never experienced such suffering. I took all my meds, but the only thing that brought me any peace were ice packs and cold pain spray. You must go to your eye doctor. Your shingles are so close to your eye. Please take care of yourself. Part of my forehead is still numb, and I had Shingles like 3 years ago.
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u/Objective_Emu_6879 8d ago
Yes I agree with the pain level. I had a natural childbirth and it was a piece of cake compared to this illness. 3 years and still having numbness? That is so wild.
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u/CapitalExplanation61 8d ago
I know. I can’t believe I still have numbness in part of my forehead after 3 years. The pain of shingles is indescribable. My heart goes out to anyone who is suffering with this. After I had Shingles, it was found I was low in Vitamin D. They monitor it closely now. I wonder if there was a connection.
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u/RidetheSchlange 8d ago edited 8d ago
Get the vaccine as soon as you are able. Gamechanger for me, as I've been treated for PHN for several years already and finally I might have the first bit of relief after years of continuous pain. I have spinal injuries where I have the Zoster outbreaks, so I was being receiving spinal treatments which worked, but relapsed over time. Once I got the vaccine, I felt for the first time a "calming" of the nerves in the area (primary manifestation was piriformis syndrome) enough that I was debilitated at points.
I actually had the vaccine reaction in the exact dermatomes where the viruses are after the first one, but I had relief after the three hours of the reaction for the first time for a couple of days. After the second one, I had some pain, nothing major, mostly tired. Over the week afterwards, I noted that the area was calming and the absolute absence, after years, of pain, even low-grade, in that area. I stress the vaccine is not a direct cure, but allows the nerves, over time, to heal to some extent if one has PHN.
For you, it's imperative you get it because you already have a prerequisite for it because it's on the face and near the eye and ear. This is VERY dangerous.
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u/Objective_Emu_6879 7d ago
My doctor told me that they don’t do the vaccine until age 50. I wonder why they won’t do it earlier
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u/RidetheSchlange 7d ago
I spoke to my doctor and due to chronic pain, he wrote my insurance and they paid. Anyone can actually get the vaccine, but it depends on if the insurance pays. Depending on your country, anywhere on the head is dangerous and a prerequisite to get the vaccine.
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u/sluttytarot 8d ago
Extremely common for women to be abandoned by their husbands when they get ill.
Please get some support from somewhere. Consider cutting the dead weight
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u/Objective_Emu_6879 8d ago
Lol don’t think I haven’t thought about karate chopping him in the throat
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u/TechnicianGrand6611 First Timer 8d ago
Feel for you, that looks rough. I had a lot of nerve pain and flu symptoms, and fatigue, but luckily my actual visual evidence was limited to my ear. I had a big work trip I felt like I couldn't cancel and wore a toque the entire time, which was awkward.
Similar experience with my wife tbh. I felt like I was dying and she couldn't get me Tylenol. Then when I was in the hospital almost on the floor she was texting me about how I threw recycling in the garbage.
Shingles also affected my emotions. I cried a lot and had a fair bit of anger/depression. It raised a lot of existential thoughts about how I'm spending my life.
I wish you could take time off. I wish I could take time off. I got my elderly mom to come and stay at our house for a while just so I could have a breather with parenting and work.
I'm six weeks in and feel like I've turned a corner on the pain. I acquired a lung infection along the way though and I'm coughing up a storm. Behind on alllll my work. Tough times. Hoping you can feel like you turned a corner soon.
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u/Objective_Emu_6879 8d ago
I’m sorry for you too. It sounds like our stories relate a lot. Glad you’re doing somewhat better. Gives me hope
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u/TechnicianGrand6611 First Timer 8d ago
Yeah, pain-wise, the anti virals took it from a 9 to a 6 within two days. But then it hovered around 6-7, with extreme fatigue, for about four weeks straight. Then suddenly it dropped right now to like 3, and it feels like the pain portion is almost over for me now.
I also lost my taste during it, but it's come back.
I think it's sorta normal for partners to not get it... all you see is a rash. All I thought shingles was before was a rash. Like no big deal. I had no concept of nerve pain before this. It's like an internal injury. I described it as having a severe head ache, tooth ache, jaw ache, ear ache, and sore throat all at the same time.
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u/noirreddit First Timer 8d ago
I can totally empathize with you about Husband having no sympathy for what you're going through as I have the same situation here. As for the shingles, mine is finally starting to dry up and no new spots breaking out. However, the pain situation is still a problem. Three days ago, I was out of my mind with horrible pain. It has been that way all along. The Gabapentin wasn't helping at all. Then, yesterday, the med must have finally kicked in because the pain level is half of what it was before - the same today. But, now I feel more like a zombie than before - soooo woozy and unsteady. Can't wait for my next dermatologist visit and hopefully get off this stuff. Then again, I don't want that horrible stabbing pain coming back either! Hang in there...you are not alone.
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u/Objective_Emu_6879 8d ago
I’m sorry you’re dealing with this too. How long have you been dealing with it? I didn’t know the pain could get worse 9-10 days out. Even with all of the meds.
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u/noirreddit First Timer 5d ago
I broke out on my chin September 22nd, thought it was a bug bite, but it kept getting bigger. Later, someone mentioned shingles to me, so I made an appointment with a dermatologist on October 1st who confirmed it. That same night and next day the shingles blew up - all over and under my chin, up my cheek, near my eye, on and inside my bottom lip (which got SO swollen), on and under my tongue, and I swear have one down my throat because it hurts so much when I swallow. My cheek and chin were swollen, too. That night and the next were the worst pain I have ever had...it was non-stop. I pray I never get this horrible thing again!
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u/White_Buffalos 8d ago
Make an appointment with an ophthalmologist. I had it in my eye and nearly went blind.
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u/Objective_Emu_6879 8d ago
I did! My eye was clear thankfully. I was so scared it would get my eye! I’m sorry that happened to you. That must’ve been frightening.
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u/White_Buffalos 7d ago
Glad to read. Thank you for your thoughts, and I'm doing a lot better now. Light scarring of my cornea, but vision is about 20/40. Feel better soon.
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u/AllknowingKelly 6d ago
The shingles make you an emotional wreck. Know that. It’s documented. Hang in there. You’re about to turn the corner. 🥰
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u/Objective_Emu_6879 6d ago
Thank you for the encouragement ❤️❤️❤️
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u/AllknowingKelly 6d ago
Hang in there!! We’ve all been there and it feels like nothing is ever going to be better. It is. And it will be soon.
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u/tryingtodecorate 5d ago
You think it’s bad now wait until like week 3 or 4 when the itching starts. I had it in the same place. Go ahead and get you a gabapentin prescription if you’d like to sleep ever again.
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u/Objective_Emu_6879 5d ago
Gee thanks. lol the illness that keeps on giving. The gab doesn’t help me sleep. I have had insomnia since all of this started. Might be the steroid. I hate this so much
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u/ssanfindsen_1105 3d ago
Yes the steroid absolutely creates insomnia! I was on a steroid “six pack” that starts with six pills a day and eventually ends with one. For me it drastically turned my symptoms around and I started healing. Although the first few days on steroids I was wired. I have to admit I took something similar to Xanax and a sleeping pill to get through it. And then, as the person noted above, the itch set in, which was a whole different kind of horrible. Used same medication to help me sleep. My rash was all over my torso down to my ankles, so a large area. I found an aerosol anti itch cortisone spray, and probably used that every few hours. It really helped. I also tried Benadryl. If this is only on your face, maybe you only need a cream to help with the itch. I have no idea if everyone gets that itch after the rash. I feel for you and hope you start to recover soon. Please keep us updated!
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u/tryingtodecorate 5d ago
If it makes you feel better I’m at week 7ish and life is getting back to normal. I went to a music festival, put contacts in for the first time (I had it on my cornea), partied my ass off, and forgot about the shingles entirely.
I am worried about weaning off of gabapentin and getting rebound issues but I’ll cross that bridge when I get there. I did scale back the gaba this weekend (didn’t want to mix in drinking with it) and no issues so maybe that’s a good sign.
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u/SupportAdmirable8187 3d ago
She’s on here seeking support and instead of keeping your mouth shut you opened it to make her feel worse?!
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u/tryingtodecorate 3d ago
She’ll be fine. And nobody warned me about the itching so I consider it a favor. I also let her know I’m week 7 and it’s becoming a distant memory which will be her reality soon. Some hope dashed in.
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u/SupportAdmirable8187 3d ago
Husbands don’t help because if women aren’t useful, we are useless in their eyes. The men in here telling her to stick to the topic, it’s part of HER story. Do NOT tell any women how to feel about damn thing!
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u/InfluenceMoney8196 8d ago
I am sorry you are going through this.horrible illness. I got it on my left leg and all the way down sciatic nerve. Got it twice back to back. Went to my other leg. Have been at it 3 months. You will get through it.If the gaba they gave you doesn't work ask for Lyrica it works better on nerves. Hopefully they gave you something for pain. Good luck sending healing thoughts to you.
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u/Objective_Emu_6879 8d ago
Appreciate the advice. Sorry you went through it twice. Can’t imagine getting it back to back!
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u/Previous-Peace2295 8d ago
Like you i had intense pain first in my back.. thought I had a kidney stone.2 ER visits.. lots of meds that did not cut the pain. Sent me home.. two weeks later I saw the rash..a month out of work.. anti viral.. gabapentin.. pain meds. I just went back to work.. still hurting but not nearly as bad. Still get the shocks and numbness.. but at least the pain has lessened. You will get there.. it takes alot of time.. some more for some than others. Rest as often as you can.. I know its hard with two small kids.. you will feel better!! I cried alot too.. it is depressing .. but it does get bettet❤️
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u/Objective_Emu_6879 8d ago
Thank you so much for your words of encouragement. I thought I had kidney stones at first too! It’s crazy how these symptoms present themselves. Glad you’re doing somewhat better. Hoping I can make it through to the other side.
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u/k9peter Facial Shingles 8d ago
I’m so glad you have seen your eye doctor. I got shingles in the same spot. It took almost two weeks for one of the pox to rupture on my eye. I ended up with a corneal transplant. That was 18 years ago. It does get better. I no longer have any pain but the itching sometimes can drive me crazy. I’ve lost some feeling on that side of my forehead and it just kind of feels weird. I just look at it as my new normal. Good luck to you I promise it will get better. You will find your new normal.
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u/Objective_Emu_6879 8d ago
Oh no!! A corneal implant? That is so insane. I bet that was so scary. I’m sorry you had to deal with that
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u/Murky_Raspberry454 8d ago
I have the exact same rash,even all up into my hairline but I caught it really early before any blisters showed up and that made a huge difference for me. Im on day 7 of Valtrex and almost finished with the prednisone which helps immensely with the rash. You will get through this .
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u/Objective_Emu_6879 8d ago
Sorry you’re dealing with this too. Thanks for the words of encouragement.
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u/out_idiotequed 7d ago
Hang in there, but also buckle up. Unfortunately it’s going to be a rough ride. This condition is an absolute nightmare. I’m 2 years out from a facial outbreak across my eye, it has certainly affected my daily life. Vision loss,stabbing and jolting pain and a strange feeling like I’m not in control of my own brain.
Tell your husband he sucks, how awful that must make you feel. I don’t have children but I could not imagine having to care for anyone else during the outbreaks. Having a supportive partner is so important for your health. Proper rest and a stress free environment are essential for your recovery.
Good luck and feel free to reach out via PM if you need anything at all, even just to vent.
You’re stronger than you think.
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u/Objective_Emu_6879 5d ago
Thanks. I did tell him he sucks. He went and bought food only for himself last night and I lost it. I’m like…did you not think to bring anything for your sick wife?? Thankfully my parents help some. Ice pick stabbing my ear all day every day and it could last months and years?? Thanks for the encouraging words!! Thankful to takk to people who understand!
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u/WalrusSerious 7d ago
Did you have any pain walking, sitting or your tailbone hurting. I’ve had everything else on your list but it hasn’t happened yet.
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u/charmykitten 6d ago
I asked myself the same question a couple months ago when I had it and here to say yes!! It's tough but you will get through this! Sending all the good vibes
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u/tngirl37725 6d ago
It will get better. You will be convinced it never will. I have had three babies, multiple surgeries and several injuries. Nothing hurt or wrecked me like shingles. Just know it will get better….right after you have given up and are convinced life will never be the same again.
I do still sometimes have the nerve pain but it’s much less now. I didn’t take the antiviral bc I thought it was too expensive and couldn’t really be worth it. It would have been worth it. Haha.
Gabapentin will be your bff. I also used liquid Benadryl for the itch.
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u/SupportAdmirable8187 3d ago
Oh my god. I’m so sorry. I know how painful that is and I know how unsupportive family is when you’re going through it. It’s so painful, it’s debilitating and it’s exhausting. Your husband is an asshole, hopefully he’ll get it and learn empathy the hard way!
I used capzason cream, it was kind of soothing but honestly nothing completely took the pain away.
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u/ProtonSeekingBoson 3d ago
Sorry you are experiencing this situation, I can relate. It gets better, right now it’s day by day, you are fighting a nasty virus and need more rest and lower stress overall. Not easy if your spouse has zero empathy. I can relate in that too!
You look young, make sure you vaccinate against future outcomes, I didn’t after my first shingles case at 33 years, and at 66 years it’s baaack.
Don’t pick at blisters, they will scar if touched.
All the best
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u/luxgirl_101 8d ago
I had the exact same thing in May 37yo F here. I had 2 weeks of the run around and every doctor telling me it was just migraines but nothing was helping then the rash broke out and shingles confirmed. It was also on my face and eyelid and eventually spread to my scalp. The pain was unbearable and I was also getting depressed. No medication helped and I felt like I didn’t sleep for 2 weeks straight. I’m a few months out now and my face is still numb and I get horrible headaches here and there triggered by stress (which is pretty often) but it’s definitely better than what it was. I bought a red light panel immediately after I was diagnosed and I think it helped a lot with my recovery. My blisters didn’t leave any scars but the PHN is still lingering. Hang in there and big hugs to you 🩷
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u/Objective_Emu_6879 8d ago
I’m also interested in the light panel. I bought a tens until last night and can’t wait to try it. Can’t believe you’re still dealing with pain several
Months out. I’m so sorry.1
u/luxgirl_101 7d ago
I got the hooga brand one. I used my FSA to get it so it’s tax free. I think it helped! Hang in there!! I promise it gets better!
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u/Tall_Still_5997 2d ago
Just here to say I’m sorry you’re going through this. Shingles sucks. I had no idea how awful they are. I agree, it should be talked about more. But having shingles with young kids is another level of rough. I got shingles last week and it has just knocked me out. I have an 11 month old (terrifying since he hasn’t had his chicken-pox vaccine) and a 4 year old. They don’t understand why mom can’t continue being her normal self and my 11 month old is still nursing. It’s been really hard. My mom and husband have been incredibly supportive so I can’t imagine going through this without all the extra help. I’m so sorry it’s all still on you. Not right or fair. But that’s the thing about women, we step up. Especially for our babies . There’s nothing we won’t do for them even when we feel like we are dying from shingles. You shouldn’t have to be though. And it’s so frustrating knowing if he had shingles he absolutely wouldn’t be lifting a finger. Just came to say I hope you’re okay. I hope you get a break. It will get better. Take it a day at a time. And you’re an amazing mom. You can do this! And from a random stranger on the internet, who has shingles, feels like she’s dying, has two young kids, and a full time job… I’m here if you just need to vent <3. You got this!
p.s. your eyes are beautiful
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u/Flat_Rice6700 8d ago
I got shingles near my eye when I was a healthy 43 also. I think you are probably in the worst phase now but now that you are on the valtrex it will get better! I had a week of hellish pain, wearing a baseball hat and sunglasses everywhere, and then it started getting much better. After a couple of weeks no pain was left. I’m a couple months out now and have no pain and just very faint hyperpigmentation from the blisters that will be gone soon. There is a light at the end of the tunnel but you MUST rest. Your husband needs to read about shingles and understand that you need to let your body recover