Anyone Else Finds Sitting The Most Uncomfortable Posture?

[Goschi]

Being Supine is of course the best position. I can also walk for some time/distance (recently extended, due to midodrine I guess), I can stand for a while, countermanouevers help (midodrine too!), but when I should be sitting for longer than 10 minutes, I feel like dying.

Especially, if I have to do some "tasks" sitting (reading, writing, eating, talking to somebody).

Anyone else experience this strange "ranking" of tolerating postures...?

[Foggy01]

Yup youre not alone. Whatever happens it feels worse than if i was exercising. Youre the first I've heard say it though.

[Goschi]

Hi, Foggy! Thanks for your reply! Of course I am very sorry that you also feel like that - but you may understand that it's also a kind of relief for me to see that I am not alone with this...

Did you find any explanation for this paradoxon? And even more important - could you find something that helps you feeling better when sitting?

[lejones1]

I'm ok with sitting as long as I can put my legs up (crossed, knees to chest, propped up, anything!), but if I have to sit "properly" it's pretty bad. Not sure if it's worse than standing still, but they're probably about the same.

Anyway, I don't know why but I would think it may have to do with flexing your leg muscles. You know when we have tilt table tests how they don't put us straight up at 90 degrees, more like 70? It's so we're not fully supporting our weight and flexing our legs. Just having to stand on your legs uses muscles and helps return blood to your heart. It's almost like a counter maneuver. When you're sitting, your legs are just totally lax. I have noticed that blood pools in my feet really quickly from "normal" sitting vs standing.

[Becia]

I'm decent with sitting as long as I can prop my feet up or have them not hanging down for too long. On church days, when I find myself with them needing to be down more than up, I make sure I have my compression stockings on to help, but I prefer to have them kicked up somehow.

[Goschi]

Sitting with my legs/feet up is definitely better than having feet down on the ground, that's true. However, even in the legs-up-position I can't tolerate sitting for longer times. I will get very jittery quite soon and start to feel weak. When in a steady movement (as f.e. when walking) I don't feel so jittery!

It's really a pity, I am longing so much for sitting somewhere quietly and simply relaxing...

[Libby]

It might not be my most uncomfortable position, but it definitely can be close to it. I can slouch for hours (and frequently do at work) but the moment I try to straighten my spine, it feels like my BP bottoms out. My hearing gets muffled, my lips feel cold, and I start having small waves of nausea roll through my stomach.

I'm super paranoid about ending up with a permanent hump on my back, so I'll tough it out as much as I can - but it's definitely a problem.

[Goschi]

the moment I try to straighten my spine, it feels like my BP bottoms out. My hearing gets muffled, my lips feel cold, and I start having small waves of nausea roll through my stomach.

Wow. That is exactely what I experience, word by word I would describe it the same way...

[blueskies]

I find sitting with my feet down is nearly as bad as standing up. It takes longer to have this negative effect but when the effects start to happen they are horrible. Not so long ago I realized that everything

When I'm sitting with my feet down I unconsciously tense/curl up my toes. I think it's my bodies way of trying to flex feet and leg muscles so it can keep the blood pumping -although not very effectively, given how I feel after a while. I no longer catch buses because there is no way I can sit with my feet down in such confined leg area. I start to fee L familiar symptoms and when it's time to get off the bus I struggle to stand up and stepping off the bus often means I'm trying very hard to keep balanced and I experience that sick heart pounding unbalanced feeling. In a car I can stretch out my legs and move my feet and don't have that problem.

I look at really elderly people waiting in chairs like this, or standing in line at a supermarket or somewhere, and am amazed at their fortitude. But I'm also really pissed off that this world is generally designed for the young and healthy in a world with an aging population. You are doubly damnned if you are disabled in some way. My heart goes out to the people in their teens and twenties who get to have to deal with this crap way too early in life.

Blue

[edriscoll]

Absolutely! I am so relieved to read all of this - thank you so much Goschi for bringing up this topic. My husband is constantly asking me why I don't just "sit and relax" - but I feel so bad when I am sitting for any period of time. As with everybody else, if I have my legs up or I slouch I can get a little relief but mostly I just want to get up and move! It is so frustrating. If I try and sit for any period of time, I want to get up and move. But when I get up to move, I have to wait and move slowly or I have an "episode". But I can't sit still either or I have an episode. And in between, I am so exhausted all the time that I am falling asleep as well - but can't lay flat down either or I stop breathing. So I am constantly - sitting, slouching,sleeping, standing, walking, sitting, slouching, sleeping, standing, walking,....... on and on... This disease is SO crazy! It makes me tired just thinking about it. lol

There was a great article written by a reporter working for the newspaper I worked for before I became ill with dysautonomia. Here is the link to the article:

http://www.sentinelsource.com/news/local/nelson-woman-with-rare-disease-to-raise-awareness/article_f0e985e5-7c1e-594b-80ec-1c6aa6509ba0.html

[Goschi]

Hi edriscoll,

I am really sorry to hear that you experience this vicious circle too. I couldn't describe it in better words...

I guess, the permanent fight or flight mode (high NE, high sympathetic activity) is mostly responsible for this ongoing restlessness. Our bodies getting weak from it adds even more feeling of malaise.

Could you find some medications that provide relief? I am still searching.

Thanks for the link to the article. Very scary indeed...

Best wishes!!!

[smish]

I find going out to restaurants and the cinema particularly hard and I think it's because they're pretty much the only places I have to sit very upright with legs down for a long period of time. I also find hard chairs in restaurants seem to make things worse. I used to think I was feeling panicky in restaurants but now I think it's just because my heart races and I start to find everything overwhelming.

[Goschi]

Hi, smish!

I can relate very much to your experience! Before I got my pots diagnosis I got the obligatory diagnosis of "anxiety disorder", because I told my physician that I get strange attacks of uncomfortable bodily symptoms when I need to sit somewhere for a longer time. Oh, if I just knew about the truth...

Btw, using a wheelchair is out of the question for me for this very reason.

[looneymom]

They do make wheelchairs that recline. Tyler does not have this type right now. If Tyler sits up with legs down, his body might be able to tolerate it 10 to 15 minutes. His legs and feet turn bright red or purple. If he lets his arms hang straight down, the same thing happens. I have also seen this happen when his arms are in a natural sitting position and I have to encourage him to move them around to get the circulation going. This is a problem with POTS.

Are you still in the hospital?

[Goschi]

Hi, Rachel - yes I am still in the hospital, but will go home on saturday. Atm I am quite disappointed by the diagnostic/therapeutic results so far, but I will post about that in thread about my hospital stay!

I wish you and your Tyler all the best for the plasma exchange!! You really deserve to see improvements after the intense struggle and I keep my fingers crossed for you!

[shan1212]

Yeah, sitting is the worst. I feel like I have first gear (lying down) and fifth gear (zipping around doing stuff), but the middle gears are just awful. This is why I am always so behind on the laundry -- too difficult to find a good position for the folding. Standing almost seems better, but sometimes that's just too much. But if I'm sitting, I can't reach all the piles, and I seem to get bogged down by gravity bit by bit.

Back when I was teaching (pre-diagnosis), I used to sit crossed-legged in my desk chair. I still sit that way whenever possible. Last night we had dinner guests while I was feeling POTSy, so I tucked one leg under me and propped the other on my husband's chair. I was better off when we were standing earlier in the evening, though by the end of the evening, standing was beyond me.

[blueskies]

I find going out to restaurants and the cinema particularly hard and I think it's because they're pretty much the only places I have to sit very upright with legs down for a long period of time. I also find hard chairs in restaurants seem to make things worse. I used to think I was feeling panicky in restaurants but now I think it's just because my heart races and I start to find everything overwhelming.

Hi Smish,

That was/can be my experience exactly .I had given up with eating out. But a couple of weeks ago I tried again. Expecting the same result. I didn't experience the 'anxiety' stuff, though. After 10 to 15 minutes of being quite bright and participating in conversation I started to yawn, go brain foggy, and know I looked like I was sleepy and probably bored. I was falling asleep but I wasn't bored. I wasn't bored. I really wanted to be there because it was youngest adult son's birthday lunch and he's been very depressed lately. I'm extremely worried about him. He noticed and said 'mum looks tired.' I just said I had not gotten enough sleep the night before, ( which is always true), but that I was enjoying myself. No point in trying to explain POTS stuff to them. But I felt I had failed my son, during what is a critical time for him, even though I couldn't help it. Guilt and POTS - that old combination.

Blue

[smish]

I think it's very hard for people to understand unless they have read enough about it. I'm still waiting to get a diagnosis of POTS (next cardiology appointment is in September) but from doing my own tests I'm pretty certain it explains everything. This morning my heart rate laying down in bed was 67 - up to 92 on sitting up - and 118 standing. That's on a day where I feel pretty "normal", although I think I've just got used to having a racing heart all the time so unless it's 140+ I don't really notice it.

I feel that when I tell people restaurants are difficult for me, they don't really get it. I think my family and boyfriend still kinda think it's just anxiety because they don't understand how sitting can make you feel so bad. While we were on vacation this year and going out for meals every night it was very uncomfortable. One of those nights I just excused myself and went to sit in the car with my feet up because everything felt way too loud and uncomfortable for me. I've always found that I naturally want to sit with my feet up beside me, and that crouching down feels much more comfortable than standing. Anyone else get that?

[blueskies]

Yeah, the feet up is how I always try to sit. For POTS and ERYTHROMELAGIA -reasons. I have read that crouching helps some people but it's not a good position for me. Even years before obvious POTS SYMPTOMS manifested, i found that trying to stand up after crouching would lead to rapid heart rate on standing and feeling faint. I was very fit, worked out regularly, so that was not the reason. I knew it was weird at the time. It used to happen in bookstores especially, when I'd want to look at the books on the lower shelves. I started to sit on my bum to peruse those books.

When I was able to do those big supermarket shops I'd just sort of grab at what ever I needed when they were on the lower shelves. I sort of tried to bend sideways. On the occasions my husband was with me he would get irritated when I would grab an item but cause another to fall to the floor. He has never understood that I found it hard to bend down fully and then stand upright just to get the item I needed. He preferred to think that I'd suddenly developed a careless attitude. Most of my super marketing is now done over the net.

Blue

[smish]

Yeah, the feet up is how I always try to sit. For POTS and ERYTHROMELAGIA -reasons. I have read that crouching helps some people but it's not a good position for me. Even years before obvious POTS SYMPTOMS manifested, i found that trying to stand up after crouching would lead to rapid heart rate on standing and feeling faint. I was very fit, worked out regularly, so that was not the reason. I knew it was weird at the time. It used to happen in bookstores especially, when I'd want to look at the books on the lower shelves. I started to sit on my bum to peruse those books.

When I was able to do those big supermarket shops I'd just sort of grab at what ever I needed when they were on the lower shelves. I sort of tried to bend sideways. On the occasions my husband was with me he would get irritated when I would grab an item but cause another to fall to the floor. He has never understood that I found it hard to bend down fully and then stand upright just to get the item I needed. He preferred to think that I'd suddenly developed a careless attitude. Most of my super marketing is now done over the net.

Blue

I'd agree with feeling bad standing up after crouching - those shops where they stack all the jeans on low shelves in piles are the worst! Haha. But if I'm just hanging round for a while waiting for something, I'd prefer to be crouched rather than standing still. I used to do yoga classes before I got really ill and I always loved it when we moved on to crouching or sitting positions after being stood up so long. Always thought I was finding it way harder than everyone else and now I know why!

I do really wish people knew more about it - I have similar problems with my partner thinking I'm a bit lazy, or not understanding why I'm so puffed out from reaching up for a few seconds to open a high window. People don't see the effect it has 24/7 and most of the time I don't even bother to mention it to them now.

Thank god for internet shopping hey!

[blueskies]

Oh Smish,

My mother and I used to go to yoga classes together about 14 years ago. I was fit, had more endurance than her generally, but she could do standing poses that I just could not maintain. The whole class of older women, I was the youngest at age 44 by far, could all do the standing and bending stuff better than me. When it came to sit or lie down I could rock those poses. Now I know why, like you.

I just click the buttons for the items I need from the supermarket, and now I can make little notes to the people doing my shopping like, "If they don't have the beef mince please just throw any sort of mince into the trolley. Many thank yous." That way there is food in my fridge for dinner (although things will sometimes have to be migrated to the freezer if it looks like I'm not going to be well enough to cook it). And when the delivery blokes come and put all the shopping on my floor they always get a tip and an offer of a cold drink if it's a hot day. After that, all I have to do is get the cold stuff into the fridge so it doesn't spoil and the rest of the shopping can wait until I have the strength to unpack it. I'm not very good at clothes shopping on the net. But I wouldn't do gift shopping any other way. I worked out some time ago that I'd rather go to the park, if I am up to it, than wander around a shopping mall.

blue

[Gerrik1]

Not good with sitting here unless my legs are up. If they are down I can't last long before the pain starts.

[looneymom]

My son also complains about the pain in his legs. It starts about 10 minutes after having his legs down in a regular sitting position.

[nomdeguerre0850]

Before I was diagnosed and started taking midodrine, I remember sitting quietly in a meditation meeting. I noticed my heart started pounding and beating faster and faster. I decided if it went to 110, (my resting pulse is usually in the 60s), I would leave the room and find a place to lie down. I suddenly thought of folding my legs and putting my feet on the chair by my bum. I could actually feel my pulse rate falling and the pounding decreasing.

Since then, when I sit i often sit like this, or in semi lotus position, and even sometimes on the floor. I definitely do much better when my legs are not in a dependent position.

Good to know this is common to potsies. The weirdness that surrounds this disease can be very disconcerting.

[EGorman]

I have a job where I sit all day, and yes, it does feel pretty bad-worse than standing up! Especially when I first sit down, which seems to make no sense...