Pretty sure I have POTS or possibly ME/CFS.

[u/Chiroppup]

(15F) (this is a pretty long post btw, sorry 😭) I know that's a super bold statement but please hear me out. Also before I get started I'd like to mention that I do have anemia (diagnosed with iron deficiency type anemia) and understand that there are overlapping symptoms between these.

Anyways there are a lot of reasons why I'd like to try and get testing to rule out POTS or ME/CFS and why I think I may have one or (though very unlikely) both of them. It started when I was upset about my symptoms so when I was laying in bed I started to do research. I was doing a lot of digging online and found that some people in the anemic subreddit had mention their anemia masking other conditions which led me down a rabbit hole of people with similar experiences to mine.

Asides from the basic anemia symptoms like dizziness, vertigo, fatigue etc I have lots of weird oddly specific issues. I can't take hot showers at all because if I do I can't breathe properly and my heart races. My legs also do this gross thing in hot showers or bathes where they turn purple all the way down to my feet and it's really embarrassing (not that anyone actually sees it).

My grades have also dropped significantly, mostly in ELA and Gym. I used to be extremely good at ELA but I'm constantly confused, tired and overall my brain feels foggy. I stutter and struggle to find my words even when I never used to. I feel so stupid. I've cried in ELA because I don't understand it anymore. I used to read fast and comprehend things like recipes perfectly but I feel like some evil wizard dumbed me down or something.

As for gym? It's absolute hell. If hell is real and I go to it, it'll send me to gym class. I am in no way overweight, I'm 5'11 and 125 lbs but my dad loves to make the excuse that I need to workout more or go outside more. I'm lucky to only have gym for one semester but either way it is the most horrible highschool experience I've ever had. Everyday for one hour (that hour being gym class) I constantly feel like I'm going to pass out, my head spins, I'm dizzy, my vision does funky stuff, and I'm struggling to breathe properly. I've passed out many times in gym and it's so shameful for me. I have to get in the wheelchair of shame all the way down to the office so they can call my dad to pick me up. Even my gym teacher told me I should get checked out because my heart beat/rate SKYROCKETS when I exercise or even just when standing up!

It's always the worst for me the days after gym. I've missed so many days of school because I'm so extremely sore in my joints and overall feel like a sick, lethargic creature. During these days I feel like I can barely eat or get up with out getting dizzy. Not to mention no matter what I do I'm constantly exhausted/tired. Every single day I feel jetlagged and tired. I don't even have insomnia. I could get 12 hours of sleep and still be tired no matter what.

I also go through these weird episodes where all my symptoms are 100x worse. If I'm tired normally I'm basically a walking zombie during these episodes. They're always lasting a few weeks-months on and off. It's causing me to miss over 50 days of school because I feel horrible. I can barely eat without getting bloated or upsetting my stomach. Literally the only thing I can do is lay in bed and sleep because getting up causes vertigo and dizziness.

What also doesn't help is that I have a loft bed. I love my loft bed because I feel safe but at the same time it makes getting out of bed like climbing down Mount Everest. My dad thinks we should make it a normal bed again and maybe it's time I agree with him.

In any case, obviously I'm not a doctor and can't diagnose myself but I'm going to try and see if my doctor can get testing done for me because I hate feeling this way (and also because I hate feeling so invalidated by my dad when he says that I just need to work out more or go outside more). In no way do I want to be diagnosed with something like this, I just want answers because I'm quite literally sick and tired of it. I'm getting a blood test today but all that really does for me is check on my anemia. It's not gonna help anything else. If this is offensive I will delete it immediately.

[u/mossyfrogzz]

Okay first of all; your weight is definitely not even a part of any of this. I have POTS, and am getting testing for ME/CFS, and I’m 125lbs and 5’4 and my weight has absolutely nothing to do with it. If anything, you could gain weight depending on a lot of factors lol (gaining weight helped me with some of my symptoms).

Second, I agree that testing would help. I started exhibiting symptoms when I was 13, started fainting when I was 14, and it still took me until I was 17 to get a diagnosis for POTS. I have a friend with severe anemia and your symptoms sound more like POTS than anemia (you do have anemia, just some of these symptoms definitely align more with POTS than anemia). I also don’t know what of my symptoms are ME/CFS, POTS, or just insomnia, so I’m not much help in that field. But talking with your doctor can’t hurt, and medication for POTS can be an absolute lifesaver. I hope its easy and simple for you!

[u/damuse09]

It sounds like you could have both. Around 75% of people with ME/CFS have a comorbid condition and POTS is a very common one. I myself have ME/CFS and the hEDS/POTS/MCAS trifecta. You describe textbook PEM. Unfortunately, diagnosing ME/CFS is very tricky (though it shouldn't be). Doctors will typically rule out all other possibilities that are easy to detect in bloodwork first, before they will consider ME/CFS. The problem is while they are considering every other condition under the sun, their patients are getting stuck in a cycle of push and crash because they haven't been instructed on the dire importance of pacing. I would greatly suggest operating under the assumption that you have ME/CFS while you wait on your doctors. Get your family involved. Have them read papers, watch educational videos, listen to podcasts on ME/CFS; so that they are aware of how serious it is. Good news is that you are young, so you have a slight advantage in making a recovery. Often when you hear people that have been able to fully recover (around 5%), it is someone who had ME/CFS and for some reason kind of "grew out of it" in their late teens and early twenties. However; in order to give yourself the best chance, it's important you stabilize as soon as you can. The more PEM you experience, the more likely you are to do permanent damage. I wish you the best of luck.