Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Watching Unrest again, I'm noticing something.

Discussion in 'General Symptoms' started by Murph, Jan 16, 2018.

  1. Murph

    Murph :)

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    So many people in that film are sitting with their legs elevated. Also, Whenever you see Jen Brea on TV she has her legs crossed under her.

    I write this with my feet on the coffee table.

    It's disproportionate. We're not just interested in sitting down. We seem to need to get at least part of our bodies into a horizontal plane, or reduce the distance from the heart to the extrremities. It hints to me that circulatory problems are even more prominent than is recognised.

    I remember even when I was well enough to have a full time job I'd often sit in my suit, in my swivel chair, with my legs crossed under me. Nobody else I ever saw did that and it wasn't an active choice to manage my sysmptoms, it just came naturally.

    I am also aware that when Fluge and Mella announced their Rituximab trial was a failure at the primary end-point, they nevertheless revealed that they had a finding related to flow-mediated dilation. I definitely wouldn't write those guys off. I suspect circulatory regulation issues could be the next big field for us. It has the potential to explain a lot.
     
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  2. NotThisGuy

    NotThisGuy Senior Member

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    I always have my feet elevated when im sitting.

    edit: this pretty much started when I got chronic ill for the first time. It wasn't full blown CFS though but the beginning of everything
     
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  3. Richard7

    Richard7 Senior Member

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    Yes I noticed it too, particularly when Jen Brea was in the car on the way back from that march. It seemed such an odd position to be in, or would if I did not suffer from PoTS.
     
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  4. Sushi

    Sushi Moderation Resource Albuquerque

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    I am also much more comfortable with my legs elevated.
     
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  5. Daffodil

    Daffodil Senior Member

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    me2. my BP is low so i think it makes sense that my brain would need more blood than it can get when i am standing. my doc said our hearts cannot pump as well or something
     
  6. Diwi9

    Diwi9 Senior Member

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    This is an area of research that is under-studied in this disease. I know Cindy Bateman has advocated for orthostatic intolerance testing in the clinical setting. It is one objective test that shows something abnormal is going on in most ME/CFS patients.
     
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  7. frederic83

    frederic83 Senior Member

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    I do the same, naturally. I feel better in that position.
     
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  8. confetti11

    confetti11 Senior Member

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    I was JUST talking about this with my neighbor. He and I were editing some videos, and even though I was having a semi-decent day, I couldn't get comfortable (again) in the typical wooden chair he provided me to sit in next to him at the computer. I kept shifting my legs around and then finally, propping them up against the wall felt most comfortable.

    I too can remember all throughout good and bad periods needing to sit on my feet/legs during all kinds of meetings to feel more comfortable. Literally no one else ever did this in any meeting I was in. In fact, I can go back to being in school (when I wasn't sick like this) and needing shift around a lot in my chair while others could obviously easily sit still.

    I always kind of equated it to how standing in one place is more exhausting and takes more energy than moving around. Maybe like holding ourselves up with our core requires more energy than giving relief to our core by bringing our legs closer to it. Or something like that. I don't know if that makes sense.

    Very interesting nonetheless. I noticed that about Jen in the move as well.
     
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  9. Gingergrrl

    Gingergrrl Senior Member

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    I sit EXACTLY as Jen Brea sits in her wheelchair with my legs criss-crossed as is often referred to as "Indian style". This is how I sit at my desk chair, dining room table, in restaurants, as passenger in car, etc. I am certain it is part of having POTS. I cannot sit more than a few minutes with my legs dangling down. I have tried and literally cannot do it.
     
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  10. -Jessie-

    -Jessie- Senior Member

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    I always sit like that too. Legs and feet elevated, making my body more into a horizontal and compact position from my head to toes. Knees bent, legs crossed at either thighs or shins, sometimes at ankles, or if trying to sit more upright I have my legs crossed at ankles and feet under me. I often ride as passenger in a car in the postion that was previosly mentioned that Jen Brea was in on the way back from the march in Unrest. Sometimes I just pull my feet up onto the edge of the passenger seat to have my knees bent and legs elevated if not feeling as bad.

    For years, my hips and knees have been flexed at much less than a 90 degree angle when not standing. It is not something I put any thought into before. My body just does this habitually now because it is more uncomfortable if I don't. I have not discussed this with a doctor yet... So I do not have a POTS or any type of O/I diagnosis, but the more I read here on PR and learn about it, the more I suspect I have some of those issues going on also.

    When I first started changing my postures many years ago to adjust and be more comfortable in sitting and laying positions, I noticed muscle pain and strain in my hips, thighs, butt, and lower back. And I had a lot of shin pain and broken blood vessels on top of my shins from crossing my legs at the shins when lying slightly propped up in bed. Eventually my body adjusted to these more comfortable resting positions and my muscles and joints have become used to it.
     
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  11. confetti11

    confetti11 Senior Member

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    I think this might go along with it too...I can't stand with both legs straight...I have to cross one over the other...essentially leaning on one leg and giving the other one rest. I do this constantly when having to stand in one place. I look at people in amazement when they can stand with both legs straight for any period of time. Like when someone much older than me can do this. This is when I know something is wrong with me...comparing myself to others. Well, it's not the only time obviously.
     
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  12. Wayne

    Wayne Senior Member

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    Hi Murph,

    Your post seems to be all about dysautonomia (OI, POTS, NMH). I've only just recently started realizing just how much it impacts me in so many ways, and how I need to do much more to counteract it.

    One big discovery I made recently was reading about compression socks, and how they can help with OI related blood pooling. A brief sentence at the end of a paragraph mentioned that compression around the abdomen can sometimes be helpful as well.

    That immediately reminded me of what I'd seen reference to several times in the book, "Dysautonomia Project", that blood often pools in the abdomen of people with OI. I then remembered how, when I work on a project in the garage, and put on a compression belt to support my lower back, that I always seemed to have better stamina than normal.

    Putting two and two together, I put on that lower back compression, and immediately noticed I was doing better, even though I wasn't moving around a lot like I normally doing when working in the garage. So I've been wearing that abdomen compression every day since, and even noticed it made a difference when I was in a sitting position.

    Then... I got the flu (two days before Christmas), and my OI has been much worse since then. So the belt didn't seem to be helping nearly as much, although I did keep wearing it. Just today however, I was in the kitchen, and REALLY needed to get some time-sensitive fermentation things accomplished.

    So I tried an experiment, and tightened up my compression belt to the point where it was somewhat uncomfortable. I almost immediately started doing better, and was able to finish my tasks in fairly short order. And the feeling of discomfort stopped as I started moving around better and I forgot all about it.

    The pooling of the blood in legs and the abdomen occur in Dysautonomia because the autonomic nervous system can't regulate blood flow the way it's supposed to, and so it pools as it does. Interestingly, a similar thing happens when we take a hot shower or bath. When the body starts to heat up, blood begins to pool in the skin to try to release heat from the body. This would seem to explain why so many pwME/CFS can't tolerate baths or showers.​
     
    Last edited: Jan 17, 2018
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  13. confetti11

    confetti11 Senior Member

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    Like this...


    [​IMG]
     
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  14. lafarfelue

    lafarfelue Senior Member

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    Yes! Totally agree with how prevalent it appears among PwME, that surely there's some broader connection.

    I've sat with one or both legs under me everywhere (home eating meals, school and uni classes, work desk and meetings, the pub) for as long as I can remember. It's just more... natural to me (can't even say 'comfortable', it's just how I sit), but I couldn't ever describe how or why.

    Since recently being diagnosed with POTS, I've figured out that my Mum has POTS too... and she's in the past said that she'd always/often sat with at least one leg tucked underneath her.

    With so many of us affected so similarly, I'd be very interested in seeing how the dilation aspect pans out in research in ME/CFS.
     
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  15. AdamS

    AdamS Senior Member

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    Great observation, I notice the same, I always cross my legs automatically without thinking about it, I also feel better when my body is more horizontal, legs raised/bent at the knees.

    This kinda reminds me of what Lapp & Klimas observed years ago...that you can do say 3-5 minutes of exercise or 'up time' as long as it is followed by 5 minutes of horizontal down time to allow the body to reset itself (ie reduce gravitational stress so that the tissues/cells can get blood/oxygen/nutrients back to them in time to recover without triggering PEM).

    This definitely needs looking into further as it could be crucial to explaining PEM...it seems to me that the recovery pathway is delayed/broken and something like this occurs on a very simplistic level:

    Delay of X (blood, oxygen, nutrients?) caused by Y (circulatory issues, signalling issues?) following exercise leads to Z (PEM).
     
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  16. NotThisGuy

    NotThisGuy Senior Member

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    I suddenly realize that my siblings are sitting that way as well. At least since puberty.(so pretty much like forever) They dont have CFS/ME and for sure no PEM, but other problems like histamine intolerance, allergies, asthma, elevated liver enzymes etc.
     
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  17. Mel9

    Mel9 Senior Member

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    Yes, I am too
     
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  18. frederic83

    frederic83 Senior Member

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    I don't have POTS and I noticed I liked this position a few years before CFS. When I force myself to sit normally, I will always come back to the leg elevated position, at one point.
     
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  19. Awags1986

    Awags1986

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    I've sat with my legs on the dashboard or crossed as long as I can remember. My dad always say with one leg crossed over the other as well. I was recently diagnosed with POTS, and my cousin was diagnosed with Ehlers-Danlos which I'm sure I also have. I was about to order the compression stockings to see if they help, but I don't have blood pooling in my legs so I may just try the abdominal compression to see if those help. I have posted about this before, but figured I'd bring it up again...at the onset of my initial crash last May I asked to have my aldosterone and serum renin checked (thinking my issue was due to a licorice supplement I had been taking) and my aldosterone came back normal, but renin was triple what it should be. Has anyone else had renin assessed? I am wanting to recheck it, and also check my angiotensin II numbers as well....(I bring this up because of it being involved in vasoconstriction, and wasn't sure if it could be an underlying connection to OI)
     
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  20. alex3619

    alex3619 Senior Member

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    For my own surprise, pretty much the only one since most long term advocates are well aware of our typically dreadful circumstances, was Jen's discussion of how her hand used to form into a fist. I have very rarely heard or seen of this, if ever, aside from one case - me. In my case its more like a claw than a fist, but its the same idea. It does not happen very often, but I have to manually unlock my fingers as I have no control over them. Has anyone else seen this?
     
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