Do You Have Problems Sitting Up In A Chair Thats Not A Recliner?

[looneymom]

A physical therapy goal for my son was to get him to sit up in his wheel chair or another chair thats not a recliner for 2 hours in the morning and 2 hours in the afternoon. I really did not know if this was possible but he is now able to do it. This goal was assignd to him in January because he has to go into a school to take the end of year testing in April. However, after he sits up for 2 hours, he hurts more and goes back to sitting in his recliner. I have noticed that he has more pooling in his legs and I even see his hands change to a different shade of color. Does this normally happened when your body is not use to being in this position for this long of time? Does this go away the more you sit up? The PT and I are very excited to see this progress but I worry about pressing him to sit up for a longer period of time. I am assuming this may be part of the reconditioning process. I know that he is in more pain and some days he gets tired more quickly especially when he has physical and occuptional therapy. For those of you that have experienced this, does the pain go away. Could his pain be increasing because he is using these muscles more to sit up?

[lejones1]

Sitting in normal chairs definitely makes me symptomatic. I had to quit a desk job because I just could not sit up all day. I don't get pain but by lunchtime I was always light-headed and exhausted and definitely got pooling in my legs and feet. Prolonged sitting also gives me headaches - I'm not really sure why but they've only happened after long days of sitting - kind of feels like I don't have any blood in my head

For me, I think maybe it just has to do with my legs being down? I can sit up on a couch or bed with my legs stretched out all day. One of the things I noticed even before my diagnosis was that I'd changed how I was sitting. I would always sit cross-legged or with my legs up to my chest in my chair at work (I know it sounds weird but I'm young and flexible) and I could only sit on our high kitchen stools for a couple minutes before feeling bad. I think this was probably my unconscious way of preventing pooling.

I haven't seen any change in this regardless of my behavior, it just waxes and wanes - but I'm a newbie to POTS and haven't found a good treatment, so maybe don't listen to me. Your son's PT sounds very promising - wonderful to hear that he's made so much improvement and I hope it continues! Also just wondering, where is his pain - in his legs or his core?

[Tobiano]

Yes, sitting in a regular chair is not great. If I sit with my feet down I get horrible brain fog and my legs start to fall asleep. I always sit with my legs cross up on the chair or I kneel on my chair. I also have to get up very slowly so I don't crash when I stand. I do much better at a standing work station (although I can't stand still either so move around on the spot).

[Katybug]

This sometimes happens to me. Two weeks ago, I almost passed out just sitting in a doc's office waiting room. I had been sitting there for about 30 minutes. I didn't move at all but the presyncope started. I yelled to the receptionist and the nurses took me back to an exam table. I of course was fine after about 15 minutes lying down. I find that on days when sitting up in a chair is difficult, I can last longer if I can put my legs up on something like another chair of the same height or a step stool. It slows the pooling considerably but allows the top half of me to be upright. Hope he does well on his tests.

[looneymom]

Hi lejones1,

Welcome to the forum and I hope you are also getting alot of useful information. My son has always complained of pain in his lower back and hips. So I'm wondering if its due to weak muscles and nerve pain. Nothing seems to help with pain right now. He had the flu in January and is still not able to stand up and walk yet.

[azmusiclover]

Since I relapsed last year this has been an issue for me, and it has really cut into my one big hobby- playing poker. I just cannot sit for long periods of time at the table without my legs having ridiculous pooling and feeling awful. I am going to try to wear compression socks next time I go play and see if that helps. At home I am pretty much always legs up when I am sitting.

lejones1- I also do the legs up to my chest thing in chairs that don't have the ability to put legs up. My kids do it too!

[AllAboutPeace]

Looneymom,

I feel like sitting still is always going to be an issue as long as there is blood pooling. Are they also doing leg strengthening exercises with him to build up his leg muscles (to help combat pooling)? All that I've read and heard indicates that working on the skeletal muscle pump is the key to dealing with pooling. I'd love to hear some personal success stories about this, if anyone has some to share

As AZmusic mentioned, have you tried him with compression?

My symptoms are much like other posters: I can't sit very long without my feet up because I start to get the cascade of symptoms (lightheadedness, brain fog, chest discomfort, nausea, etc) and it knocks me down for a long time. Does he get those kinds of symptoms as well while sitting? If so, it might be really beneficial for him to have a stool to put his feet up on while writing tests and it might be helpful if he was able to get up and move around at a particular interval. I know my cognitive function goes downhill as more blood pools and that could make writing tests more challenging.

I can sit at the dining room table for about 1/2 hr with feet up and I do get sore from that. If I keep shifting around or get up and down, I can drag the time out a little longer, but being still (sitting or standing) doesn't work well for me. Maybe it's stomach pooling too and just overall poor circulation?? Lower back and hips is where I feel the pain too, but for me it's only when sitting. Does your son have this while reclining or supine as well? I have tried to keep my feet down for periods of time in hopes of challenging my body a little bit, but the pooling just happens and I end up being less functional as a result and then I have no energy for working on leg strengthening. Pots is such a complicated animal...

I hope the combination of therapies will help him get back on his feet soon!

[looneymom]

Hi AllAboutPeace,

Thank you so much for responding. Even when my son is in the recliner, he still has pain in his lower back and hips.When he rides a stationary bike, the pain is there. He has been checked out by a rumotologist but I'm wondering if it's time for a second opinion. He has complained of this pain for a long time. Since he has had the flu, he has never been able to get back up and walk. Our pt has him do an exercise where he sits down and pushes himself almost into a standing position and then sits down. He does not shake at all when he does this. However, when he is standing all the way up, he shakes from waist down and might be able to do this for 10-15 seconds. The pt and I have noticed this shaking seems to be getting more severe as each week passes. My son has never worn compression socks or hose before. Where is a good place to get these?

[corina]

I'm so sorry your son is struggling so badly looneymom. I really hope you will be able to find him some relief. You're doing a fabulous job trying to find answers. Just thought I'd let you know!

[looneymom]

Thanks Corina.

This web site has been so helpful. I referred someone the other day to this site. I had an email from someone that was reading a blog that I started over a year ago. The caregiver was trying to find a doctor for their son also. Wish we had specialist in every state or specialist that would be willing to collaborate with doctors that are willing to learn how to treat POTS.

[Kellysavedbygrace]

Sitting In a chair is an Orthostatic position and will effect anyone who has Orthostatic intolerance.

At Cleveland Clinic durning Hemodynamic ltesting I pooled 37% of my total blood volume in my legs upon sitting upright. This created a 42% reduction in cardiac output yet had no significant change in blood pressure.

At Vanderbilt during autonomic testing the Postural and medicine studies they conducted allows the patient to sit upright for a significant portion of the study as sitting up is considered an upright position. (after 2 hrs my BP dropped consistently to 80/50)

Personally I've found that I can usually sit upright for no more than 45 mins without becoming symptomatic. So when planning for visiting with friends or going places I keep this in mind. It might be helpful to measure this for your son.

Hope this finds you and your son in a good moment. God Bless.

[looneymom]

ThanksKellysavedbygrace,

This makes more sense to me now. My son probably needs to go through some more testing but we have some test results now that our cardioloist is trying to figure out how to treat.

[Katybug]

Looneymom,

You may want to Google tethered cord syndrome and see if that might be something he should be evaluated for if no one has found other causes for his pain.

[AllAboutPeace]

He has been checked out by a rumotologist but I'm wondering if it's time for a second opinion. He has complained of this pain for a long time. Since he has had the flu, he has never been able to get back up and walk. Our pt has him do an exercise where he sits down and pushes himself almost into a standing position and then sits down. He does not shake at all when he does this. However, when he is standing all the way up, he shakes from waist down and might be able to do this for 10-15 seconds. The pt and I have noticed this shaking seems to be getting more severe as each week passes. My son has never worn compression socks or hose before. Where is a good place to get these?

So, if I'm understanding right, it sounds like you and the pt may be thinking that the shaking isn't due to weak leg muscles (since he can do the other exercise without shaking)? I'm a big believer in trusting your gut instincts, so I think if you are leaning towards seeking a second opinion, it might be worth pursuing.