u/Slight_Wind9283

My primary believes I have pots. She sent me to a rhumotologist to rule out an autoimmune disease. They diagnosed me with fibromyalgia. I asked why they weren’t considering eds or another connective tissue disorder, and she told me that since it’s been over five years since I started showing symptoms, it’s unlikely that it wouldn’t have been diagnosed by now. Also because I couldn’t touch the floor, my muscles have always been really tight so I’m not flexible.

I’m so confused because ever since my first symptom that I’ve noticed (chronic exhaustion), I’ve been going to multiple doctors trying to get a diagnosis. I’m wondering if I should find a new doctor, or if she’s right and something in my bloodwork would’ve said something by now. (Ana and everything is normal). Would it be getting worse within five years? Why does this disqualify me for a diagnosis? I’m wondering if this has ever happened to anybody else. The reason I suspected eds is because my aunt has it.

I just downloaded it. I’m not diagnosed but I’m scheduled to do a tilt table test. The app keeps alerting me to a 35-39 beat change EVERY TIME I stand up. I’m thinking of deleting it, takes up too much battery. Is this useful information for my doctor, though?

I have been struggling for a while now. My doctor wasn’t taking me seriously, and I had to keep begging for tests, so I switched doctors. The new doctor suspects pots.

I explained to her all of my symptoms: how my heart feels weird a couple of times everyday (I start feeling the beats, and they feel hard), my chronic fatigue / brain fog / exhaustion (that isn’t helped too much by Adderall, idk when the last time I felt well-rested was. Sleep study was normal), the muscle pains that I have, how weak my body is (like how I have to sit down in the shower because it just becomes too much), chest pains, migraines, extreme dizziness when I stand up or turn too fast, and how difficult it is for me to be in anything but perfect room temperature (she diagnosed me with Reynolds syndrome after I showed her a few pictures).

She had me wear a holter monitor for a week. I pressed the button about 10-15 times a day. But everything came back normal. Just like my blood results. She tested everything, including ANA.

I am diagnosed with major depressive disorder, adhd inattentive, generalized anxiety disorder, and panic disorder. The doctor asked me if I wanted to go ahead and schedule for the next tests: an echo and tilt table. I’m so scared that I’m going to waste so much time and money (US) on nothing. I don’t know which symptoms are in my head and which are real.

My symptoms aren’t debilitating. I feel like the more I explore this subreddit, the less I feel like this suits me. But I’m struggling through life and I don’t want to keep going through it if it remains this hard. I’m not worried about the tests themselves, but I just know they’re going to come back normal, because they always do. But there has to be something wrong. Life shouldn’t be this hard, right?

I guess I’m just looking for anyone else who feels the same, or went through this before getting diagnosed. I’m not even sure I’ll believe the diagnosis if I even get one— maybe they’ll just tell me I have it because they get tired of looking. I just don’t know what to do.

I’ve been having sympoms for years, and my doctor wouldn’t listen. When I told him about my issues, he’d say it’s anxiety or that I’m too young to be even complaining about these symptoms.

He’d say that everybody gets dizzy when they stand up. That I need to work out and gain more weight, drink more water. He said the feeling of heart palps was in my head, it’s just anxiety. I began thinking that it was all in my head, especially when the bloodwork that I begged for came back normal.

So, I found a different doctor. She brought up the idea that I might have pots. After researching, I’m scared this might be my dx. I know I’m going to get a lot of people pissed off when I say this, but I’m not trying to invalidate anybody. It’s just that pots seems like a dx that doctors give you when they see something’s not right, but they can’t figure it out.

I got diagnosed with idiopathic hypersomnia after a sleep study. I’m constantly exhausted and no amount of sleep helps with that. After years of trying to get a dx, I was told I have IH and they can’t do anything about it. Being diagnosed was my goal, I was excited that I finally had an adnormal test result on paper to validate how I was feeling, but in the end, it meant nothing. They can’t do anything about it.

I feel like this is a losing battle and I’m never going to feel better. I’m just… tired.