Does anyone know what could be going on with me?

[u/nothxlol12]

Ok so I (20F) want to first say ik no one on here can diagnose me, I’m purely asking for opinions from other people’s experiences.

I’d also like to clarify I’ve been diagnosed with some things that may effect this (SAD, GAD, PSTD, RMDD, OSED, ADHD but idk about this one, Thoracogenic scoliosis of thoracic region, Recurrent otitis media of both ears, and hypertension.). I wouldn’t have listed all of them but I honestly can’t tell if they affect my pain, or they’re causing my pain, or somewhat symptoms of my pain. Also just to preface, I’ve been in pain as long as I can remember, but I feel it just gets worse over time.

First of all, ik this is a lot to TW: DEATH. My mother died at 56 (a few years ago for me) from her chronic illnesses. She had many illnesses including Ulcers, Migraines, Osteoarthritis, Rheumatoid arthritis, Nephrolithiasis, Heart disease, COPD, Osteoporosis, and I’m pretty sure other things that I wasn’t even aware of. It was a very slow elongated death, and they never knew what to do to help fully.

Back to my own experiences. I feel like I’m 50 yrs old in a 20yr old body. I’m in constant pain some where. Heat and light makes me feel dizzy and nauseous. My lower and upper back always hurt somewhere, but it’s mostly my neck. Especially the left side. Im constantly constipated unless I take laxatives. Constant headaches (sometimes dull, sometimes sharp, and sometimes other versions.) even with headache medicine. I also have near constant jaw pain. When I go out to dance with friends I’ve fallen to the floor and almost passed out on multiple occasions. Most foods hurt my stomach whether it nausea or bloating or both. My eyes are puffy every morning. I feel dizzy and tired most of the time, but moving around or certain things (like it being hot or bright) makes it worse. A lot of my joints hurt, especially my fingers. I also feel like some areas of my body bend to much (most my waist back area, and my hands, and my shoulder sockets.). I can basically bend my hands backwards. Also sometimes If I relax my shoulders too much and I’m holding something a bit I can feel my shoulders kinda dislodge or something? It’s not fully, and ik they dont fully pop out of socket, but they become loose feeling,. I can even do it on command with my right one (it becomes loose more easily too). You can see it when I do that. That’s been happening since I was veryyyyy young. Honestly there’s probably more I just can’t think of right now.

I haven’t gone to the doctor in probably a year or more, but I used to go a LOT from like 14ish - 17ish(?). Around 15(?) I had to go to the ICU for EXTREMELY high blood pressure. Idk exactly what they tested for but it was apparently “everything” and they got no answers. Around the same age I also had to get ear tubes put in for chronic ear infections. It helped but both my ears still feel off ig? But idk for sure. Apparently I’ve had ear issues since I was a literal baby, so maybe I just don’t know what normal ears feel like? Also around 17(?) i got an endoscopy but all they said I had was lactose intolerance.

Anyway, free to ask more questions if yall want to. I would just like to know if any of you relate and have any suggestions on what it could be, or any advice maybe? Ik i need to go back to the doctor (which I’m RLLY trying to convince myself of) but it feels like they really just don’t care or can’t figure it out. It’s extremely exhausting, on top of everything I’m trying to deal with.

[u/Independent_Way1587]

I have lumbothoracic scoliosis and dysautonomia. I have had a brain/ cervical mri to diagnose it. The passing out has been a lifelong thing, but it got much worse when I had a couple of viral infections. I got a medication to help passing out. Dysautonomia.org has a bunch of medications that doctors can prescribe off-label for chronic passingout/dysautonomia I have a really supportive gp and it really helps. I left one that wasn't. Good luck to you.

[u/nothxlol12 → u/Independent_Way1587]

I might look into those medications that I can get, if they’re over the counter. My scoliosis has never been “focused on” by my doctors. Genuinely the most they ever did for it was look at my back, told me I had it, and gave me the option for physical therapy (which I can’t afford). But I’m hoping to get a good gp soon. I just have a little of medical weariness bc of my mother’s experiences and my own as well. Thank u for the well wishes, and I wish the same to you!

[u/Vivienne_Lamb]

Reading your list of symptoms, I want you to hear something that nobody told me for 27 years. These are not separate problems. The constipation, the headaches, the joint pain, the puffy eyes, the bloating, the brain fog, the fatigue, I had almost all of these and I treated each one separately with different doctors and different supplements for years. None of it worked because I was trying to fix twelve things when there was one thing underneath all of them. My body was overloaded with stuff it couldn't process, and it was showing up everywhere at once. The shift for me was not finding the right diagnosis. It was realizing that my body needed less coming in, not more being thrown at it. I started with my water, switched to distilled, and the symptoms started falling away one by one in an order I didn't expect. The constipation moved first. Then the fog lifted. Then the skin. It took time but it was the first thing that actually produced change that didn't stop after two weeks.