u/OkMathematician2972

I can't sit in a chair(OI), so I usually sit on the floor. My go-to position is to put my legs close to my chest, curled up. If that's not possible, I sit cross-legged and lean back. But somehow it's both been a strain on my neck and back...😭

I also tried sitting reclined on the recliner or bed but it was somehow uncomfortable. It felt like my neck and back are unsupported and kinda hunched. (Especially when you are eating something the angle doesn't feel right)

Tl dr; So I would really love some new ideas to sit and stay upright for a while...

(More compression the better, though I already use compression garments)

I can't sit in a chair, so I usually sit on the floor. My go-to position is to put my legs close to my chest. If that's not possible, I sit cross-legged and lean back. But it's been a strain on my neck and back...

So I would really love some new ideas to sit and have some compression on my abdomen and legs... (I already use compression garments btw)

I also tried sitting reclined on the recliner or bed but it was somehow uncomfortable. It felt like my neck and back are unsupported and kinda hunched.

First of all, I'm not asking for any medical advice!! Of course, I'll discuss it with my doctor through the whole progress.

Sorry if I'm being a finger princess but my mental energy is rlly low and I just wanna hear you guys experiences.

My pots flare is about to get really bad(it happens this time of the year for 6 months), and I'm scared. Pots meds aren't helping(I've been through several med choices but sadly no). And I have to wait for a few months to meet a new pots doctor.

And I have really low physical and mental energy so I might have trouble doing basic stuff like eating... So I thought of maybe getting a little help from psych meds?

Is this possible? I heard stuff like low dose ablify from the cfs sub... I'm not even sure if low dose option is known or possible in where I live...

I tried wellbutrin from neurology but it was too strong so I had to stop after 2 days.

Tldr; Does anyone has resources that i can read about?

I would really love to know as much as I can before I visit psychiatry, because I've never been to one before and I've had some bad medical experiences from other departments. (the one who diagnosed me with ttt tried to send me to psychiatry coz I might have anxiety that I don't even know. Also afterwards, I learned pots dx is really unhelpful for doctors who are ignorant.)

Edit, I don't wanna function "normally". I just wanna keep my basic function like eating. But too much fake energy might make me crash physically and I really don't want that. I probably have no issues with my brain(anxiety, depression). But I'm worried the psychiatrist won't agree with me.

Sorry if the post title was a little too clickbaity. I'm not trying to make an argument. This is just a discussion.

First of all, I am very aware of what mecfs is. In fact, I've been pretty worried about it. I've been lingering around the cfs sub for quite a while now, and I did read a lot of the informative contents from the bateman horne center.

When a person on the pots sub mention sth like "crashing a day later" or "getting worse and worse", there are a lot of comments saying "that definitely sounds like mecfs".

I'm not saying that is bad or wrong. It definitely can be a common comorbidity, and it is important that people are well aware of the concept of pem.

But what I'm saying here is what if it's not? What if it isn't always pem? Just an ordinary autonomic crash happening the next day?

Just worsening orthostatic intolerance and just low energy and fatigue? What if it's just severe pots and autonomic nervous system out of whack?

Again, I'm not tryna argue anything. I just wanted to have a discussion because I myself is worried about mecfs.

My pots did get severe after covid infection. I sometimes don't crash the same day. It's been 4 years and it's poorly managed, the pots meds aren't helping at all, it seems a bit more like getting worse than getting better.

But, despite it all, I don't quite relate to mecfs. I sleep relatively well.(Sometimes I sleep a lot but I think I wake up "refreshed".) The pain seems more like a coat hanger pain due to bad blood flow, than the "flu like symptoms" (My upper back hurts). And I regularly did some really intense exercise for the first year or two(to make my pots go away), but I didn't get permanently worse. Sometimes I crash bad for months and it seems so bad that I worry about mecfs but I think it's just really bad orthostatic intolerance and nothing more...

Edit: Also my brain fog gets really bad but I think that's just bad blood flow too. Because it gets worse when it's upright and low barometric pressure.

Tldr; Does anyone else with really bad pots relate?

First time ever getting one and it's a folding powerchair. (Also I'm an ambulatory user btw.)

I'm trying to get used to it but so many new situations are kinda overwhelming...

Ex. Which way to get in and out of a elevator. Or what do I do when there are too many people? Tips for getting stuck in a crack?

Do you have any recommendations, like social media(yt, ig etc.), that kinda educates newbies as a experienced user? Or maybe like an account that shows a lot of using one(in public spaces)? So that I can kinda unconsciously learn?

I'm still searching but it's not easy! Any comments appreciated!:)

+Can't seem to go back straight even though it's a rearwheel drive?

Genuinely curious. Exercising is considered as key treatment for pots.

But people with pots is so diverse that every person's experience can be so different.

And posts asking only one side can tend to have a survivalship bias.

So I'm here asking both sides.

For those who exercise helped, what do you think your subtype is? And how long did it take to recover? How long did you have pots? How did your severity change? Was your pots triggered by a virus? Any commorbities?

For those who did not find exercise helpful, what do you think your subtype is? And why do you think exercise wasn't helpful? What's your severity?

I'll go first.

I didn't benefit from exercising (at least yet, it's been 4+ years). I consider myself not hyperadrenergic, but more like a compensatory kinda type.(Neuropathic or hypovolemic) My hr is not that high. I never feel faint. But I crash hard and long after upright postures. Mostly bed/housebound. Also other factors(like barometric pressure) are so strong for me that I wonder even if I did benefit from exercising, would it ever outweigh the triggers?

(Exercises I've tried:

-nonaerobic: I used to do sports targeting core and leg muscles for 1~2 years. It was kinda high intensity and I was forcing myself to do it while house/bedbound. Didn't really do anything so I quit and stayed in bed. I stayed much less active but time made me recover naturally and slowly(until I crashed for another reason)

-aerobic: tried CHOP when I was relatively feeling well, but I crashed huge suddenly after one exercise and never recovered.(Not permanently but other triggers overlapped after a few weeks after that, so it took more than half a year and still not feeling well.) I was thinking about trying ADAPT again but now I'm going reaaally extra extra careful and slow. Not making fixed exercise routines again. Never doing seated stationary bikes again.)