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Sitting worse than standing?

Discussion in 'General ME/CFS Discussion' started by stevesayshi, May 27, 2014.

  1. stevesayshi

    stevesayshi

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    I have POTS and also what seems like occasional OH, with general circulatory type problems we are almost all familiar with.

    But weirdly enough I find sitting to be more exhausting than standing. Perhaps it's due to rather significant atrophy of back muscles, but it almost seems like less blood is reaching my brain when I sit. Lying down is easiest of course. Does anyone else have this "problem" (symptom)?
    [Sorry if this is the wrong forum]
    Allyson likes this.
  2. Artstu

    Artstu Senior Member

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    I always sit with my feet up and my head supported if I can.
    WillowJ and Allyson like this.
  3. taniaaust1

    taniaaust1 Senior Member

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    that is a strange one but as you said maybe its cause your back muscles are weak. I have problems sitting too and need my legs up when sitting but Im far worst standing as which is normal with POTS.
  4. minkeygirl

    minkeygirl Is Jim Jones alive and well on PR?

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    I have the same problem although I don't have POTS. I think it's more to do with my heart. The only time I sit upright is when I"m eating, otherwise I'm horizontal. But I can't stand without holding on to something. I think my leg muscles have atrophied and I'm just too weak to stand.

    walking is easier than either.
    stevesayshi likes this.
  5. SOC

    SOC Moderator and Senior Member

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    I've heard that's an OI thing. When you are upright and moving, even if it's only fidgeting while standing, your leg muscles help pump blood to your torso and brain. That isn't a huge deal if you have enough blood volume, but if your blood volume is low, there isn't enough oomph (that's a scientific term ;)) in your cardiovascular system to get the blood everywhere it needs to go.

    Some things I've heard of to help the situation are:
    • Compression garments
    • Increasing blood volume with meds, extra fluids and electrolytes
    • Sitting with feet up, such as in a recliner, rather than with feet on the floor
    I strongly suggest you look into being tested for some form of OI.
    ETA: I just reread the OP which said you have POTS. :bang-head: I'll revise that comment to suggesting you consult with the doc treating your POTS since it seems you would benefit from more/better treatment.
    WillowJ, stevesayshi and Sushi like this.
  6. stevesayshi

    stevesayshi

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    Thanks for the detailed comments! I do try to increase blood volume, need to prop my bed up as I pee so much when prone. It takes me a long time to build up fluids in the morning, and I live in AZ where even though I stopped sweating nearly as much as I used to (more autonomic dysfunction, I racked up so much in so little time...) I still lose a ton of fluid during the day. High sodium seems to make tinnitus worse, but so it goes (maybe a sign of higher blood pressure in the brain, so a good thing? Now that I think about it, it's quietest when I'm super zoned out).

    As to the doctor thing... I am 33 and male so I didn't really have a doctor when the proverbial feces hit the fan ;). The cardiologist I saw was totally unimpressed by the 15 BPM change in my resting pulse ("stress", haha), and even though I multiple multiple times mentioned the dramatic change in my prone to sitting to standing pulse (60 85 100, not as bad as some have it I guess) he didn't give it a second thought.

    My heart feels like it is much much weaker than it used to be. I am only 6 months in so I still am deep in mourning for the body I used to have, 20 pounds of muscle ago (plus I had relationship and job crises right before, probably why my immune system wasn't able to knock out the stomach bug that my coworkers got over in a week:(). I don't know how to yell at doctors effectively yet.

    Minkey, nice to hear I'm not the only one. And it makes me grateful that I can still stand on my own and walk a couple miles before it's too painful... for now.
    Gingergrrl and SOC like this.
  7. Allyson

    Allyson *****

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    Yes this is a common issue Steve - Dr Peter Rowe describe it think in his POTS clips

    it is because:

    1 you have no muscle movement in legs when sitting - so a lab or bar stool is the worst of all

    2 your legs are bent constricting blood flow at the hip

    3 likewise for the ankle he says too - a slight eel is better that no heel on your shoes

    there is more bout iin his clips in this link
    http://forum.notcrazy.net/index.php?topic=9571.0

    interesting that you noticed it too

    Ally

    http://forum.notcrazy.net/index.php?topic=9571.0
  8. Allyson

    Allyson *****

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    and yes I find when I lie down a lot all my symptoms disappear - after a few days - which convinces me this the cause of most my symptoms

    limits my activity but at least I don't feel terrible al time when I lie down a lot

    Ally
  9. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    Yes, I have the same thing, but did not reveal it, since I haven't read about it anywhere. I feel better standing up, worse when sitting up, medium when lying down! I think the intraabdominal pressure goes up when we are sitting up. I like to stand up a lot since that makes me feel better, but then I can stand up for only a few minutes.
  10. WillowJ

    WillowJ Senior Member

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    I feel best when I change between sitting in a recliner, lying down, and making short forays into being upright but walking or otherwise gently moving about.

    I cannot lie down too much or joints hurt, etc.

    I cannot sit much with feet down or back unsupported, but this isn't as bad as trying to stand in one place.

    Even when walking, if someone talks to me while I'm up, chances are I cannot give them a sensible answer and will later forget what was said.
    ahimsa and Valentijn like this.
  11. Gingergrrl

    Gingergrrl Senior Member

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    @stevesayshi Sorry to hear all that you are going through and I was wondering if you are thinking about getting a second opinion from another cardiologist? My initial cardiologist was not very helpful but referred me to a heart rhythm specialist who was much more understanding of IST/POTS type issues.

    My HR issues have gotten worse lately, but this week got better as I changed the way that I take the beta blocker (and can explain more about this if it is relevant to you but if not, I don't want to get too off track!)

    I totally relate to what you said re: mourning the body that we used to have and I think that happens no matter what point we are in of the illness and all the stages of grief overlap.
    WillowJ likes this.
  12. WillowJ

    WillowJ Senior Member

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    I second the motion to see an electrophysiologist or nuclear cardiologist, not just any cardiologist. Getting the right specialist can make a lot of difference.

    also agree with that. all the best

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