Trouble With Sitting As Well As Standing?

[futurehope]

I get symptoms with sitting as well as standing. I get very headachy, get a neckache, feel horrible and just want to recline. Of course, if I want to do any living at all, I stand and sit anyway even though I feel bad. Does anyone else who has POTS have trouble sitting as well as standing?

I keep thinking, if I could only sit, well then I could use a wheelchair if I needed to, but, unfortunately, sitting does not help me function. How do you all do when you are sitting (vertically, the normal way)?

Thanks for your replies.

[MightyMouse]

On a bad day, sitting is only slightly better than standing; lying down is the only way to make the dizzies stop on those days. Nina

[ethansmom]

I definitely have problems both ways. I find it most comfortable to alternate between sitting and standing fairly regularly- can't do either one for too long. The two hardest things for me to do are go shopping or sit through a class

[Roy]

Sitting isn't the best for me either. Somedays my symptoms are only slightly better when sitting. When I do sit I have to sit leaning forward on the desk or with one leg propped up to my chest for support. I can no longer sit with perfect posture. I'm affraid I might end up a hunchback.

I must lay down 2-3 aday as well if I don't I can get myself into a real jam.

[Dawg Tired]

It is the same for me, at church they are used to the fact that I will take off my shoes, turn sideways in the pew and put my feet up. We went to Kansas (6-hour drive) this week for my husband to take his mother a new-to-her computer and I am now in MAJOR pain. We stopped to walk fairly often but even putting my feet on the dash as much as I could was not enough. Sitting is not much better than standing. I had to quit work when I reached the point where I could not sit upright for 2 hours a day.

[Michelle Sawicki]

One of my friends has such a hard time with sitting that she has had to resort to using a horizontal wheelchair. She is an amazing person, with an incredibly positive outlook on life, despite her inability to walk or even crawl anymore. She really is an inspiration to me.

Michelle

Sorry - I know I posted "vertical wheelchair" at first. I meant to post "horizontal wheelchair". Hope that wasn't too confusing.

[Sue]

Ditto here as well,

I find myself squirming to find a "safe position", I even have a hard time laying down!!

Sue

[futurehope]

It's a big relief to me to hear all your answers. I was really starting to wonder what was going on with me. I have this problem ALL THE TIME. Rarely, on a really good day (they've been infrequent), I can sit for maybe an hour without symptoms. But my usual day consists of leaning, propping up legs, squirming, getting up and moving, anything but staying still and feeling miserable (make that MISERABLE). I'm still looking forward to some doctor somewhere knowing what to do about this. Pretty soon I'll be getting test results from my Insulin Tolerance Test which tests for weak adrenals. This is different than testing for Addison's disease where 80% or more of your adrenals do not function. Maybe my test results will tell me something. I just have a hard time believing that I can not sit or stand for any length of time. It's impacted every aspect of my life (as if you didn't already surmise that).

Thanks for at least showing me I'm not alone with this. It stinks.

[ethansmom]

It IS tough! I took a CPR class with my good friend a few months back, it was supposed to run from 9am-5pm. Talk about MISERABLE!! There was super bright flourescent lighting in the room, and it was freezing too- I couldn't even imagine staring at the instructor for all those hours and being able to focus. I was so dizzy and lightheaded, so I kept shifting in my seat, and kept getting up to walk around, but just couldn't make it- I ended up leaving at 11am and crying all the way home. All because I can't sit still...sheesh. You are definitely not alone!

Jessica

P.S. The American Red Cross refused to refund my money for that class, even though I explained my situation to the supervisor two times. GRRR!!!!

[danelle]

Yes, I have this problem too. I was supposed to attend a class last week but knew I couldn't make it all day long even 1 day much less 5 without feeling light-headed, disoriented, or feeling like passing out (if not actually passing out).

And some have a hard time getting disability for POTS??!!! Can't figure that one out yet!!

[futurehope]

Roy,

What's the "real jam" you get yourself into if you don't lay down 2 - 3 X / day?

Michelle,

Could you elaborate on your wonderful friend? What is her ailment and what is a vertical wheelchair?

Thanks.

[VJWeaver]

I get dizzy in any position I am in. I have gotten very dizzy while laying down. I don't worry about it that much because I atleast know I can't myself if I pass out then. hehehe.... I do have NCS and POTS. It is very rare for me to do it laying but has happened.

[Roy]

Roy,

What's the "real jam" you get yourself into if you don't lay down 2 - 3 X / day?

If I don't let myself recouperate and I try to push myself thru an entire day without resting, I become very symptomatic and it takes almost 2 full days of being bed ridden to get back to "normal".

I can definitely relate on the sometimes overwhelming sensation to recline.

[Michelle Sawicki]

Futurehope, my friend has been told she has POTS by one doctor, and PAF by another. I think she has more than just POTS or PAF. She has a condition where the cartilage in her knees is breaking down, so she can't even crawl anymore. She can't walk at all. Despite her limitations, she is an incredibly positive, inspirational person. She writes beautiful poetry, and recently had one of her poems published.

I don't know the specifics of her vertical wheelchair....she just wrote to me and told me how excited she was to have finally gotten it. It really helps her to make it through church services and such.

Michelle

[StaceyYount]

Hey,

Sitting is bad for me too though I find standing worse. It helps me if I pull me knees up close to my chest so my feet are in front of me. I don't seem to get as dizzy and tired as fast. But always when you are sitting keep your feet up. Because blood pools while your sitting as well as standing. I do have worse days where I can't sit as long and it is very frustrating especially with the wait time at some doctors offices.

Stacey :-)

[Dawg Tired]

Stacey, you have really hit the nail on the head. Sitting during the wait time in a doctor's office is terrible! I know they are terribly busy but by the time I get into an exam room I have to lay down.

[briarrose]

Hey I know what you mean about the sitting/standing factor. I sit for 12 hours a shift at my job. Sometimes I think it's going to kill me. I try to put my feet up on a stool, chair or the edge of a garbage can. I lean forward on the counter. I try to get up and walk around my area every now and then. Sometimes I have to just go lay down for 15 minutes or take my lunches sleeping.

I know when my blood pressure drops with sitting. I can almost guess what my blood pressure is because of how dizzy and faint feeling I get. My eyes start to blur out and I get these horrible headaches. My muscles start to spasm in my back and neck. It's just a bad situation.

With that said, I have found that when I'm hypovolemic and/or anemic it is much worse. So since my epogen injections have increased my fluid and blood count and they started me back on IV iron 2x's a month, I'm finally feeling better. Although a little under the weather today, hope I'm not getting the kids stomach flu.

Vertical wheelchair - I thought that was the newer wheel chairs that lift into a standing position so people can be more functional in the kitchen and easier to grocery shop; just a few examples.

[futurehope]

Thanks all of you for answering. I'm also very interested in which of you who have problems sitting currently hold a job? If you have a job, what is it, or how much sitting do you do and how many hours a day and day per week do you work? I'm really interested in seeing the impact the inability to sit has on your life.

Thanks again.

[Dawg Tired]

At the end of my working career I was like briarrose, I would take "sleeping" lunches. I had an employer who was genuinely trying to keep me working as long as possible - we were all hoping I would get better with some rest or something. They bought me a rocking/reclining chair and fixed my computer keyboard so it was very movable and I could put it on my lap or anywhere I wanted to. I could go to the break room and lie down or take a nap whenever I needed. But the day came in the course of the progression that I could not remain upright (sitting in a recliner) for even 2 hours of the day. I cried on my way to the car. One of my co-workers had to call my husband to come get me because I had given up driving a few months before, then she walked me to the car because she was afraid I would fall down or pass out on the way.

We have a laptop computer that I can use while I lie in bed or on the couch or I don't know what I would do. At church I sit in a back pew and turn sideways so I can put my feet up. In the car I recline the seat slightly, take off my shoes and put my feet on the dash. I have not sat at the kitchen table to eat a meal in months - I always eat on the couch where I can prop my feet up on the coffee table.

Impact on my life?? I reckon so! But also an impact on my husband's life...

[futurehope]

Dawg Tired, I can TOTALLY relate. I wasn't driving during the last year I was working either, neither do I do much now. I also do not sit at a table to eat unless I'm at a restaurant, of course, which is relatively rare, or when we have people over, which is relatively rare as well. I don't think normal people have a clue what it means not to be able to sit or stand , but, I can't waste my life wondering what other people think.

Thanks again for your response. I hear ya!

BTW, I haven't gotten to the point where I can put my legs up in the pew at church. We have so many people that need a place to sit that before I'd take up a pew seat, I'd go in the "crying" room and listen via close-circuit TV and recline there - though, I would rather be in the sanctuary. So, I force myself on Sundays unless I'm really ill, but that's about the only time I really force myself. I guess you can say we have a different perspective on life

[Michelle Sawicki]

Sorry - I know I posted "vertical wheelchair" at first. I meant to post "horizontal wheelchair". Hope that wasn't too confusing.

Michelle

[futurehope]

Michelle, That makes sense, even though I have never seen one. Thanks for the correction.

[StaceyYount]

Futurehope,

Have you tried sitting with your feet up on the pew so that your knees are bent to your chest. You actually take up less space and it sometimes lets me sit a bit longer. I have not worked since 1995 and I too use a lap top computer which has been so great! We just got it, before I would sit in weird contortions to be able to prop me feet up and still use the computer. Though don't try the propping up of feet and knees to your chest in front of a psych doc because one asked me why I was sitting in the fetal position.

Stacey :-)

[futurehope]

Stacey, I've contrived my own method of sitting in church. I try to obtain "my seat" as early as possible, which consists of the uppermost seat in the balcony. You can't get any further away from the pulpit (there is no intent implied here, just necessity). This particular seat has NO pew seat in front of it, only steps. I then lean forward/down on my knees which are on the floor. I look like someone with back problems. I chose this seat so that I would not be breathing down someone's neck when I'm leaning forward. And I usually do not stand for anything (though I'm supposed to during certain portions of the service).

With prayer I usually can make it, though I may not be feeling that great. And to think I used to be able to work, go to three services a week, sing in the choir, help when I could, and now...... ...... I just do whatever I can, which is not much more than pray. But, to look at the bright side of things, I have had many years when I was blessed with the means and ability to do all sorts of things including raise a daughter, go to college, pilot a small airplane, and more, so I can't say I've missed out on anything. I'm very much aware that this malady could have occurred in my younger years.

[futurehope]

Stacey, That "fetal position" comment is a hoot!