u/Starrie__Nights

Hi,

I'm 16(F) and for the past 3+ years, I've had chronic daily mouth ulcers. 8 months earlier, I lost my ability to play my clarinet and saxophone because anytime I ate or put anything in my mouth in general, I'd bleed - I had to decide between playing and eating. I was in two bands and was living off of smoothies for about 3 months.

It's gotten bad enough I've been going to Shands off and on; I've bounced between 2 different specialists and am off to another pair, and here locally, I only see a dermatologist. My dentist even recognizes me as an extreme oddity. That aside, I feel no doctor I've met with takes me seriously other than my dermatologist; I really need some help. I'm stressing over so many different possibilities and I'm so scared that this might end up so much worse.

It started out when I was younger; I remember at least having canker sores when I was about 8; it was the first time I had ever gotten strep and now I'm super prone to it; after every bout my flares get worse. They popped up every once in a while back then, but over the years, they've gotten persistently worse. I really couldn't tell you when exactly I started having them daily; it's all a huge blur and I never documented it, but I even think it's been closer to 5 years. I wish I could've documented them back then, but my doctors all told me it was normal for a hormonal girl to have canker sores and wrote it off. I'm not trying to throw anyone under the bus, but I know my history is longer than 3 years. I also experience all 3 types of Apothe Ulcers -herpetiform, minor, major. They also appear in my throat and have permanently altered my voice to sound more raspy (I got a scope done though and they said they didn't see any scarring, but my throat looked irritated; I've seen them in the back of my throat before though and have had that same sensation further down.)

I want to take a moment to talk about some other symptoms of mine, other than the extreme mouth ulcers I can get.

I've been experiencing joint pain in the shoulders, hips, knees, ankles, wrists and fingers for YEARS. I started having issues when I was about 9. For some context (not sure if it means anything, as I would've likely been over it by now), I was a competitive swimmer (6-8) as well as a musician (12-present [play flute & etc.]), so maybe that could explain some of it in the wrists and fingers, but my wrists started way before I ever got into music. My shoulders are the worst in comparison to the others. I remember taking a state standardized writing test when I was 11 and crying because there was such a BAD pain in my shoulder out of no where and I was panicking. My shoulders always hurt a little and hurt more with movement since I was 9, and I remember seeing an Orthopedist when I was about 12 for it once. They saw nothing wrong with my shoulder and referred me to rheumatology at Shands, but we never went.

I've had some GI issues for a while now - not necessarily stomach pain, but in my intestines. I have diarrhea about 1-2x days a week, sometimes more and similar with being constipated. Sometimes I feel something "drop" in my intestine and it's painful- it doesn't matter if I have diarrhea or am constipated, it'll happen for both although it's not as common as it was. Not sure if this would fit the category here either, but I also wake up nearly daily with an extreme sore throat - it doesn't matter if I have postnasal drip or not, I will usually have a sore throat (like I have right now). Sometimes it's mild, but right now and often, it's very sore.

I also have been having a dry tongue; I mentioned this to my dentist I saw Tuesday and she immediately downplayed it saying the rest of my mouth looks wet - that's not the point. It's only my tongue that's dry and it's super irritating. Anything I eat/drink leaves a BAD aftertaste in my mouth and I think it started about 6 months ago. Ontop of that, I don't think my tastebuds are growing back properly; I've lost a lot of my taste over the past few years.

Another weird thing related to "dryness" - I have issues crying out of my left eye and have for years. I remember back when I was 9, I had a hard time crying from it unless I was bawling my eyes out. Sometimes, after blinking, my vision also goes blurry, and this can be in either eye or both; it can last from 30s-20min. I also don't sweat unless I'm on my period.

My symptoms cross over multiple areas and I'm an oddity due to my normal bloodwork - everything has come back normal, including the Ig family, vitamins, viral; everything is normal. I feel like no doctor I've been seeing is taking this matter seriously, even though it's clearly affecting my quality of life. The only thing my ulcers have been responsive to is colchicine and I just started about 3-4 weeks ago. I noticed they're smaller than normal and I had a day where I didn't have any - that was the best day I've had in my life.

I'd also like to briefly skim over family history - my paternal uncle died when I was about 9, so I can't ask him personally, but according to everyone, his story is the only one that matches mine. Growing up, he was on a lot of antibiotics for strep and other things. I just question what really was going on - my grandpa has psychosis and told me that before he died he was diagnosed with some kind of disease, but I can't really tell you if that's true or not. His death was very traumatic (he was hit by a train around christmas) and my family cannot decide between murder, suicide or accident because all evidence points in either direction. That aside though, he did have a very similar history to me.

My parents both have had a history of canker sores - my dad gets them all the time (not as much as I do though). His can range between herpetiform and minor ulcers typically, although sometimes he has a major ulcer. His other siblings all have a history with them as well, but the extent, I'm not so sure. My paternal grandfather also has a history of them (he told me to put rubbing alcohol on them multiple times, but I don't take his advice for obvious reasons). He gets minor ones, and his wife also can get them (rarely).

My dad, on an unrelated note, has an occasional episode where he feels like he's going to pass out or have a stroke (it's really scary). Doctors can't do anything for him because he's a stickler about going to the doctor. He's a 42 y/o mechanic though, so maybe that could cause something weird. I just know I should mention that.

My question is, what does this sound the most like? Please, if you have a moment to give a potential answer, I'd really like to know. I'm tired of going to doctors offices (specifically Shands) just to be introduced and be let down. What are the next steps? I'm scheduled for oral medicine and rheumatology but I have no idea when there appointments are. I'm open to more questions if those are needed, I'm just in dire need of help. I'm losing the ability to like my life.

Thank you so much for taking time into reading this and I hope you all have an amazing day!

Ive been having canker sores nonstop for 3 years and have recently been going to shands because no one will locally see me since I am a 16 year old minor. I haven't gone a day without one in my mouth or my throat at all for these past 3 years and it's slowly making me lose myself.

This week, I had a really bad flare (which to a degree, I am thankful for that, as I have an appointment with shands in 8 hours). I cant sleep. I cant live like this anymore. It hurts to drink fucking water.

I'm likely getting a couple biopsies later today at shands, as well as a bunch of bloodwork (pray for me; last time I got bloodwork, I passed out, and was really close to passing out with my biopsy).

Its slowly taking away my quality of life. This week, I only ate on average once a day and went 2 without food entirely. I hate living like this and I just want a doctor to tell me what's wrong with me. Ive been in and out of these offices so many times and no one can tell me shit. It's gotten so bad and degenerative, I've seriously considered learning sign language to avoid moving my mouth when speaking.

I just want someone to talk to about it or about other things - I have virtually no one to talk to. I just want to feel like Im not losing my mind for a second. I can give advice for canker sores, I'm like a walking encyclopedia on tips for these hellspawn, even though thus far nothing's worked for me lol.

Ask me anything.

Hey yall. I'm a 16 y/o girl looking to get some answers. I just got a biopsy but I really don't like surprises and am super nervous they're going to come back with nothing, per usual.

So for the past 3 years straight, I've been having constant canker sores (never a day break without them; I ALWAYS have them) and was wondering if my symptoms align with anyone else's and maybe i have early stage chrons or something...?

My canker sores range from minor to major (they can reach a cm in diameter sometimes) and they are VERY painful. I get them all over my mouth (roof, tongue, tonsils, lips, gums, everywhere). I have no known triggers and have tried various cancelation diets - none seem to work. I also have normal bloodwork so far (all common vitamins, viruses and even autoimmune came back with nothing). No medication I'm on works either; I'm on every possible med they can give me for just canker sores; the only relief I get is lidocaine, and that I've even grown a resistance to.

Alongside my canker sores, I also have gingivitis (despite having pretty good dental hygiene), as well as extreme tooth sensitivity to hot and cold. I also have a sore throat nearly every morning when I first wake up. For a while I was convinced I had cankers in my throat, but we got a scope done and she said it looked like there might be scar tissue, but she wasnt entirely sure (I know for a fact I've had them in my throat before)

I typically switch between having diarrhea and being constipated (all tests done on stool also came back normal). Alongside that, at least once a day, i swear I can feel my stool moving throughout my intestines and it can sometimes be SO painful; it's usually crampy, but as sometimes really sharp.

On a strange, almost unrelated note, I have two other symptoms : weak shoulders and have gotten more and more fatigued as the months go on.

I did just get a biopsy, so I guess I'll wait and see within the week if it even is showing up autoimmune in my tissue, but since my medical expedition (even though its best to hear from a professional) I always thought it lined up with chrons disease the best... has anyone else experienced these symptoms? All symptoms seem degenerative and get worse with time, except for weak shoulders (joints in general); that existed before canker sores and has remained pretty stagnant throughout.

Any insight would be super helpful as to what it could be otherwise, thanks so much!

Hey yall. I'm a 16 y/o girl looking to get some answers. I just got a biopsy but I really don't like surprises and am super nervous they're going to come back with nothing, per usual.

So for the past 3 years straight, I've been having constant canker sores (never a day break without them; I ALWAYS have them) and was wondering if my symptoms align with anyone else's and maybe i have early stage chrons or something...?

My canker sores range from minor to major (they can reach a cm in diameter sometimes) and they are VERY painful. I get them all over my mouth (roof, tongue, tonsils, lips, gums, everywhere). I have no known triggers and have tried various cancelation diets - none seem to work. I also have normal bloodwork so far (all common vitamins, viruses and even autoimmune came back with nothing). No medication I'm on works either; I'm on every possible med they can give me for just canker sores; the only relief I get is lidocaine, and that I've even grown a resistance to.

Alongside my canker sores, I also have gingivitis (despite having pretty good dental hygiene), as well as extreme tooth sensitivity to hot and cold. I also have a sore throat nearly every morning when I first wake up. For a while I was convinced I had cankers in my throat, but we got a scope done and she said it looked like there might be scar tissue, but she wasnt entirely sure (I know for a fact I've had them in my throat before)

I typically switch between having diarrhea and being constipated (all tests done on stool also came back normal). Alongside that, at least once a day, i swear I can feel my stool moving throughout my intestines and it can sometimes be SO painful; it's usually crampy, but as sometimes really sharp.

On a strange, almost unrelated note, I have two other symptoms : weak shoulders and have gotten more and more fatigued as the months go on.

I did just get a biopsy, so I guess I'll wait and see within the week if it even is showing up autoimmune in my tissue, but since my medical expedition (even though its best to hear from a professional) I always thought it lined up with chrons disease the best... has anyone else experienced these symptoms? All symptoms seem degenerative and get worse with time, except for weak shoulders (joints in general); that existed before canker sores and has remained pretty stagnant throughout.

Any insight would be super helpful as to what it could be otherwise, thanks so much!

Hey! My names Star and I recently picked up the flute from clarinet and tenor sax (i had to quit those due to an ongoing medical issue). I have a cupid's bow lip which makes it wonky to play - do you have any suggestions? I'd love any advice or tips on how to improve. A link below is my Instagram and I'd love any advice and support! Thanks so much!

https://www.instagram.com/jazz.tries.flute?igsh=MXFpd3V0ZjN1bnJ6bw==

Hey guys,

So I've been dealing with cankers for the past 3 years, everyday, no break within the 3 years and I'm scheduled for my first biopsy on Monday. All of my tests thus far have all come back fine... I just need reassurance. I'm super nervous itll come back and be something bad, like chrons disease or oral cancer, but I'm also worried that they dont find anything and I have to continue on like this for the rest of my life. I had to give up my only hobby and I'm having a hard time actually talking and eating... its been rough. I'm super nervous and I guess I just need reassurance about maybe the process and the statistics behind them (my doctor said normally they're redherrings). Anyone here had one done...? I'm again, really nervous and terrified about it, because all my bloodwork has come back with no issues (minus one, but at the time I had bronchitis, so its been invalidated - IgA). Please let me know any experiences; it might help ease my nerves.

Hey!

I just got finished babysitting two toddlers at my mom's polo game. Both are perfect and very sweet, and an easy watch. The only issue however is that one of the two has really bad eczema. I just realized today (her mom later confirmed it when I asked) that she was suffering from it, its my second time watching the both of them. She's only 1½ years old, so they can't do patch testing on her to try and get to the bottom of it. Its unfortunately everywhere and she had a bit of an itching fit today and there wasn't much I could do to help her. She had some medicated cream her mom brought with her and I used it once (it helped for about 30 minutes), but she never told me to use it or anything (she thanked me for using it though, so i guess there's that as an option next time). She has rashes all over her little body and wouldn't stop itching at them... I almost cried when I was trying to get her to stop itching; it was so hard to watch (i also grew up with chronic pain in the mouth, so i really do empathize with her... it broke my heart 😭💔)

Does anyone have any tips on what I might do to distract/help her with the pain? She likes Mrs. Rachel, and that seemed to work and prevented her from scratching, but is there any tips on what I could do? And in the future, not just for her, but I work with toddlers at my church and some of them likely have a similar situation; what could I do to distract them from chronic pain?

Thank you so much for any tips! They're all really appreciated.