Hey guys! As promised on Instagram, I decided to write this blog post because during the very beginning of my time with shingles shingles, I found myself frantically searching the Internet for answers. I found a ton of information about people in their 50s, 60s and 70s with shingles but there’s not a ton out there about people in their 20s, 30s and 40s with shingles. So I wanted to write this in hopes of giving anyone out there who is searching for answers some information based on what happened to me. I’m not a doctor and you should always seek medical advice, but I can give you a day by day account of what happened to me.
Shingles in Your 30’s
Honestly I cannot believe I got shingles. I always thought this was something that affected elderly people. In fact, my dad has had shingles five times in his 60s. But something that I have found very interesting about the disease is that it’s so different for different people. For example, for my dad the first signs of shingles was muscle aches and fatigue. Where as mine was something completely different.
As you’ll see while reading my story, on day 8 I decided to share my experience on Instagram and I was absolutely shocked at the thousands of comments from people saying either they had it young or knew someone who had it young. So I think it’s a lot more common than people think.So here is what happened to me on a day by day timeline.
The day I first noticed was that I was feeling a little itchy on my forehead and scalp. However I chalked it up to something completely different. It just so happens that on that day I was cleaning out some stuff in our garage and I pulled a bag of pillows out, which should never have ended up in the garage we must have mistakenly put them in there, and when I open the bag it was filled with a bunch of little bugs! Some of which flew out of the bag and I contributed the itching to feeling gross from that. I remember that night we went to put the kids to bed I told Kevin that I felt like I had to go shower before I laid in bed with Riley because I just felt itchy “from the bugs”.
The next day I noticed some weird tingling in my forehead. At first I didn’t really pay much attention to it, so I just kind of thought it was across my entire forehead but then when I really started paying attention to where it was I quickly realized it was only on my left side. I even did an Instagram story asking my followers if they thought it could potentially be a complication from Botox. I was all worried because of my vanity that I had some sort of nerve damage in my face. As a day went on, the tingling got more intense. The best way I would describe it would be like a little electric shocks and I felt those electric shocks so much more when I would run my fingers over my forehead/eyebrow. I also noticed that if I rubbed my eyelid, it felt like I had a sunburn.
Around 3 PM on this day I decided to text my dermatologist. She is absolutely amazing and immediately FaceTimed me to help me diagnose what was going on. She quickly let me know that it wasn’t due to Botox and right away mentioned she thought it could be shingles. Shingles?! I was blown away at what she was saying. How could I possibly have shingles at 36 years old?
She told me she wasn’t 100% sure, but as a preventative measure she thought that we should start me on the antiviral medication, Valtrex. She basically said the benefit of starting the medication early is if it was shingles and we could catch it early, that it was greater than any potential downside of taking a medication I don’t need.
I here’s something you should know about me, I am not the type of person to take medication I don’t need. I’ll even hesitate before taking ibuprofen if I’ve been in pain. But my dermatologist told me that if it were her, she would start the medication just because shingles are no fun. Boy was she right.
My husband immediately went out to pick-up the prescription she called in to CVS and I took my very first pill around 4 PM on day 2 and then a second one at 8:30 PM – which I woke up to take. Yep, you read that right. I went to bed at 6 PM this day because I was so fatigued and exhausted. I woke up at 8:30 and took my second pill, even though technically you’re supposed to take them eight hours apart. She wanted me to try to get two doses in that day. Then get this, I slept until about 8AM the next morning. That’s 12 hours of sleep! Granted our house alarm did go off in the middle of the night which woke me up, but not for that long so I would say I got a good solid 11 hours asleep.
On day 3 (which is when I started writing this so I’ll likely switch to talking about in present tense) I woke up feeling really tired and had my first visible sign of shingles. I had a little red dot that looked like a pimple above my left eyebrow. It may have looked like a pimple, but boy it didn’t feel like one. If I even slightly touched it, it stung like crazy! At this point I was so bummed out that it was on my face. Like really, on my face for everybody to see? But now that I know how sensitive the blisters are, I feel lucky that it’s in a place where I don’t have to put clothing over it. By the end of the day, the 1 pimple dot turned into 2 on my forehead.
Even though I slept 11 hours the night before, I still took a 2.5 hour nap on day 3. I don’t know if I am really just that exhausted or if I’m just letting myself relax because I have shingles. After all, they say you get it because of stress if you get it when you’re young. So I was really trying to let myself relax.
Here are pics of Day 3 – End of day.
Last night I slept for 14 hours. Yes, 14 hours. I went to bed around 8 PM and slept until 10 AM the next day. I woke up briefly around 8 AM to quickly say goodbye to my kids before my husband took them to school, but then went right back to bed for another two hours. I am unsure if I’m sleeping so so much because I’m finally allowing myself to relax or if it’s because I stopped drinking coffee once I found out I have shingles, or if it’s just the shingles really taking me out. I’m sure it’s a combination of all three. But I find it hard to believe that shingles alone would cause me to sleep so so so much. So I also partially blame the coffee and just needing sleep and finally allowing myself to have it.
On day 4, I noticed more spots. The single pimple on my forehead had turned into four spots in a curved line going down my face. The first one was towards the top of my forehead the second one just a half inch or so above my eyebrow, the third one right below the inner part of my eyebrow and then the fourth one in the inner corner of my eye.
The eyelid one is most concerning. For that reason, I went to the ophthalmologist for an emergency appointment just because if shingles gets in your eye it can cause long-term vision problems. Here’s the thing, I had been noticing that the vision in my left eye had been getting worse over the past 10 days. I noticed the difference in my eye well before I knew about the shingles. Although I didn’t think too much about it because I had the same issue with my eye a year and a half ago.
Quick backstory, about a year and a half ago I noticed that my vision in my left eye rapidly deteriorated. I went from being able to see fine through my camera lens to one day trying to look through my camera lens and everything being completely blurry. I use my camera lens as a reference because I have to shut my right eye and only look with my left eye and that’s why I noticed it so drastically when it happened. I went to the doctor and got glasses and then two weeks later when they arrived and I put on the glasses, the prescription was way way way too strong. My eyes randomly improved within two weeks. That eye doctor chalked it up to being stress related and that my eyesight was likely related to deep fatigue from stress.
Funnily enough, shingles is brought on by stress when you get it when you’re young. So I went to the ophthalmologist to see if my eyesight was stress related, shingles related or both.
Woke up with a swollen eye. Oye.
Although, on the plus side, I will say that the uncomfortableness of it all is either leveling out or I’m just not noticing it as much. Another plus side is that I’m not nearly as exhausted as I was for the first four days. I’m sleeping maybe 10 hours a night opposed to 14 hours a night. Ha! Still a lot of sleep but not as much as before.
I also noted that the swelling started out worse in the morning and was a little less by the end of the day. Not much less, but slightly.
So far I’ve been miraculously hiding this on social media. I don’t know why I’m not ready to share yet, I guess I’m just worried it could get worse and and until the point where it starts getting better I don’t know that I’ll share.
More swelling this morning. My eye was definitely a bit crusty when I woke up. Also I woke up multiple times throughout the night and then finally at 5 AM for good due to pain. Not pain from the blisters, but such bad headache pain. I don’t know if it was from laying in bed for so long or what, but by the time I got out of bed around 6:45 AM, my back ached and so did other parts of my body.
I think at this point my biggest concern is that the blisters don’t really seem to get be getting bigger on my forehead or bursting. In fact, I don’t even see them filling with fluid so I’m a little worried that I’m going to be in this for the long-haul. Or maybe by chance I was misdiagnosed and this is something else. I’m sure it’s shingles, but part of me at this point feels there’s a chance it could be something else just because so many people including my dad, who has had shingles five times, seem to think that I should be getting better at this point. Or at least starting to have liquid filled blisters that burst and that doesn’t seem to be happening to me.
The headaches have gotten very severe today. They’ve always been severe in the sense that there is this super sharp stabbing pain that almost brings me to my knees. But what changed today, or really as the day went on, is they got progressively closer together. Before I’d have a sharp shooting pain maybe every half hour, but now I’m getting them every minute or so and it made it really hard to fall asleep. I find if I sleep on the side of my face that doesn’t have the blisters, the headaches aren’t as bad as if I try to sleep on the side with the blisters.
Slept 10 hours last night! I normally sleep about 8 1/2 or 9 hours since I have an angel of a husband that gets up with the kids, so 10 hours isn’t that big of a difference for me. So I definitely think the extreme exhaustion is well over. It really was only the first few days.
For the first time today I feel like I’m seeing improvements. The blisters on my forehead are no longer sensitive to touch and they feel very dry so I believe that means they’re crossing over. My eye also isn’t as swollen this morning as it’s been other mornings.
Although, I will say the nerve pain in my head seems to be getting worse. It doesn’t feel like it’s on my skin, it feels like it’s in my brain and it gives me these sharp sharp sharp headaches. I’m nervous because I finally shared on my Instagram today that I have shingles and I’ve gotten hundreds of DM’s, maybe even over 1000 DM’s, from people saying that the pain lingered for them for months after the visible signs of shingles went away. I’m really hoping that’s not the case for me.
More improvement today. I still woke up with a piercing headache, but visually my blisters seem to be clearing up. I’m super grateful for that because I really want to hug my son. I haven’t been able to hug him for over 8 days because he’s not vaccinated for the chickenpox vaccine. I don’t believe I’ve already said this, but shingles is essentially the chickenpox virus that has been lying dormant in your system since you had it as a child and is then reactivated.
Headaches continue to get worse and I’m having trouble sleeping now.
Some good news and not so good news. I’m happy to report that my blisters are really really clearing up today. They don’t hurt at all anymore to the touch and I wouldn’t be surprised if they’re completely gone within a couple days.
That said, the headaches continue to be intense. I wish I had better news for everybody reading this. If you did find me from a Google search in your first few days and were hoping that’s as bad as it’s going to get, unfortunately that didn’t seem to be the case for me. My appearance looks so much better, so for anybody looking at me they would think I was fine. but the pain in my head is intense. Sometimes it’s sharp and quick and only lasts a few seconds but then sometimes it’s sharp and lasts 20 to 30 seconds and it’s unbearable.
I’m no longer dealing with shingles so I just wanted to put a break in this to make it clear for anyone reading this that the pain I felt from this point forward isn’t really considered shingles pain anymore because my shingles blisters have all dried up. There may be some of my scalp that I can’t see, but I don’t know. So at this point my doctors are calling what I have postherpetic neuralgia. It’s funny, I definitely felt like I had some pain with the shingles but I didn’t quite understand why I was getting messages from people saying it was absolutely excruciating because it just wasn’t that way for me. Now I understand. The pain for me really started after the blisters were mostly gone. I’m so sorry for those of you reading this who are in the early stages who are hoping for relief later on. Know that not everybody gets postherpetic neuralgia. From what I read, I believe it’s around 20% of shingles patients. But if you do get it, it’s almost unbearable. I wish I had better news.
The nerve pain has been getting so bad that my doctor prescribed me some hydrocodone yesterday. It maybe helped a tiny bit, but not much. In fact I barely slept last night. I had to keep coming downstairs to change up my ice pack because I had to have an ice pack on my head all night long. So my doctor decided to put me on Gabapentin. Because the pain was getting so much better around day 7, I started scheduling things for this week and now I’m realizing that this might be my worst week.
Didn’t leave bed all day except to go to the doctor because the pain was so bad. The doctor put me on an intense Vicodin and gabapentin medication regimen to help manage pain. I also got a B12 shot and another shot. I honestly don’t remember the name of it I just know it was like “strong Advil” to work with the Vicodin.
Went to the eye doctor again this morning because my left eye is starting to get really painful. They checked my cornea and everything looks good, but given the pressure behind my eye and the fact that I’ve had huge fluctuations in my eyeglass prescription over the last month and really the last two years (that’s a whole other story I’ll blog about at some point.) both my eye doctor and my primary care physician feel I should get an MRI so they scheduled that for tomorrow evening.
I also did acupuncture this evening. I’ve read so many things about the benefits of doing it to help with pain. I have to say, during the treatment I felt like I was floating or something – and I felt minor relief which was amazing. But once the needles came out and I was home, I was right back to the same pain. But I’m gonna go everyday this week in hopes that it helps.
I have great news to report. I woke up with some relief this morning. Don’t get me wrong, I still have the sharp pains and it still sucks, but it sucks just a little bit less this morning. I’m so so so hopeful that the worst might be over and hopefully I’ll get a little better each day.
I also did acupuncture again today.
And lastly, I got an MRI this evening. My doctor just wanted me to get one to make sure that we’ve checked all boxes since I’ve had a lot of health issues lately and some vision issues over the last year, like I mentioned above. Thankfully it was all clear!!!
A lot of people have asked me if I was going to get the shingles vaccine. And then I’ve also heard from a bunch of people who are under 50 who said their doctor said they could not get it. Personally, my doctor told me that I can get it and she recommends that I get it about 8 to 10 weeks from now. She said that all of my antibodies fighting shingles are at high alert right now and then we’re basically going to give them a booster with the vaccine in 10 weeks. She did however tell me that because I’m not 50 or older my insurance will not cover it but she thinks it’s around $220. And after all the pain I went through that’s worth every single penny! So right now I’m scheduled to get one in October and I will let you guys know how it goes.
I might update more…
Here’s the thing, I am feeling SO much better now, but that doesn’t mean that it’s all over. I might come back here and add more to this blog if anything changes or there’s something notable that I learn. If you didn’t know much about shingles or are suffering with them as well, I hope that this helps you feel a little less alone and also gives you the perspective of someone much younger than what information is available online. Thank you so much for all your kind words and well wishes! It means so much.