Mouth Sores?

I was fine today, up until I got home from school around 3. I sat down with my usual peanut butter and toast, getting ready to watch Sherlock and lo and behold my throat begins to hurt. Curious, I went into the bathroom and looked at my throat with my flashlight app. Sure enough, there, on the roof of my mouth, is a very large, clear blister/sore. That popped (gross ik) and I tried to spit all of the fluid out. I guess it did not matter because soon the entire roof of my mouth was covered in blisters. Worse, my mouth was on fire. It felt like someone had thrown a match into my mouth. So I called my dad crying and he was able to get me into see my pcp.

Once I was at my pcp, my temp was 100.9, I had a rash, that looks like many tiny dots, going down my back, chest, and stomach, and my mouth was still on fire. I was in tears when the nurse told me my temp was 100.9. I am petrified of any temp over 100 due to my horror story with DMC. To make matters worse, my phone died so I could not call my mom.

Anyway, there I am, crying, and suddenly the doctor walks in. I saw his face fall slightly when he took in my expression. He grew more and more concerned as he examined me. He did not know what to do because it did not look like a bacterial infection. He thought it was viral. Still, I was in a lot of pain. He offered up tylenol 3 and I turned it down because my mom doesnt like me on pain killers. However, I cannot take naprosyn due to my kidneys. Still, begrudgingly, I accepted the prescription for T3.

He decided to do a plethora of blood work and before he left I asked if he could run a UA since I tend to spill protein when I dont feel good. He checked my urine, and sure enough I was spilling 1+ (its been consistent now). He decided to send the urine out and sent me on my way.

Little did I know that he had ordered a blood culture. I am used to blood cultures due to DMC. I refer to them as "vampire shots" because the bottle they use to collect the blood looks like a shot glass. lol. Anyway, my arm went numb because they drew so much blood!

Luckily my rash has subsided somewhat. My temp went down to 99.2 and my throat is not nearly as red. My heart is still giving me issues when I stand up (I get dizzy and slightly light headed), Still, I am in a lot of pain despite having taken one tylenol 3. My mom and I wonder if this is not all just a lupus flare. It feels like someone just drained all my energy from my body. Im achey, and my head is killing me. It's a 180 from what I felt like this morning.

How can we go from feeling fine one minute, to being in tremendous pain the next? It seems like I can never get a break! Its only the second day of school and already the threat of a hospitalization/ER visit is on the horizon *shudders*. My doctor gave me strict orders that if any of my symptoms get worse I am to go to the ER. No ifs, ands, or buts.

I will keep you all updated on how things progress. Hopefully, I can avoid a trip to the hospital. Im not a fan of IV's.

I wish you all the best of health,

Teenlupus101

Big Hugs to you Teen. Since your doctor doesn't feel the mouth and throat pain are bacterial, viruses could include mono, or even herpes simplex (very common, most people have been exposed and either build an immunity or have outbreaks from time to time esp when stressed) Also, some people with lupus, I'm one, will get mouth, nose, and even ear sores. You may have just gotten your first dose of these.

I hope you can avoid the hospital, and please do keep us updated! You matter and are cared about very much. huge healing hugs,

Louise

I get odd mouth sores, rashes, and reactions to food all the time. Bad news is that it sucks to have a disease that doctors find completely unpredictable. The good news is that you have us and we know how it is to go though these issues. The change in body temp could be a flare. Just a flare. Sure, it could be more, but then again it could just be a flare. Which is simply part of all the crap we go through. Yes, it could be more, which is why you should keep an eye on it and let your body rest. It needs rest! Are you stressing? That will cause a flare! If you are stressed already about the new school year then this could be your body reacting to it. It’s hard to tell, which is why your doctor is concerned. Don’t worry more than you need to. Instead, keep an eye on it and make notes of what’s going on. Act like you are conducting a review of someone else. It can be scary. This idea is meant to try and make it a little less scary. We are here for you and want to hear about any updates. Meanwhile, try to focus on just being young. Okay? Xoxox

Hello Teenlupus101

Although I have never had severe mouth sores I can relate to feeling fine one second and feeling like crap the next. I was diagnosed when I was 24 and at 49 I'm still here. I don't like pain meds myself but sometimes they are needed. Just be careful with them. I know it can very hard sometimes because it's hard for other people to understand how we feel. You are a very strong young lady and you can do this I know because I can do it and I tend to be a bit of a weenier! I will say a prayer for you take are and keep us updated.

Piewacket

Hi there,

Sounds like your docs are on top of it. I wish the we (collectively) didn't have to go through this.

My mouth waxes and wanes. By that I mean sometimes I can eat real hot stuff and sometimes I can't even tolerate a fresh tomato and to the extreme I can't even toloerate water. I have permanent (so it seems) purple dots on my tongue. Comes with the territory.

One thing that has helped immensely has been yogurt every day. Or get RX pro-biotics if you can't tolerate dairy. Due to all the autoimmune meds (prednisone especially) and antibiotics on and off, we're prone to yeast infections. For me pro-biotics/yougurt (which I prefer) is 50% of the battle.

Hope you feel better soon.

You have to hold on.

glad you were able to get in to your PCP. I don't have much experience with the mouth sores, but it does sound like it could be viral or lupus. For some reason hand-foot-mouth disease is popping into my head. Praying you find some relief and recover quickly.