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ME/CFS and Beating the Clock
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Orthostatic Edema

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Valentijn, Feb 2, 2014.

  1. Valentijn

    Valentijn Activity Level: 3

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    I've had pretty much constant swelling for a couple years now. It's most noticeable to me at my wrists, as they feel uncomfortable when I bend them back when they're swollen, and bending them back creates visible little mounds that feel like jelly when poked.

    Initially I thought it was all due to immune reactions to foods, since various foods can have the same effect on me. But even after eliminating everything, I would still have it happen pretty much constantly. However I just noticed that it's not present in the morning, but appears shortly after I get up - before I eat or take any supplements.

    So as far as I can tell, this describes it:
    • Non-pitting
    • Orthostatic
    • Very fast onset, within minutes of getting out of bed
    • Mostly painless
    • Symmetrical
    • Might effect abdomen
    • Effects arms and legs

    Nothing I'm taking should be capable of this. It doesn't seem to fluctuate in reaction to my salt intake, though I might try going low-sodium again to see what happens. I tend to feel better when eating lot of salt, probably due to it helping with my orthostatic hypotension.

    Does anyone else have this? Or have any idea what could be causing it?
  2. lansbergen

    lansbergen Senior Member

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    My calves could get twice as thick overnight. It did not feel like endema. To the touch it felt like hard muscles.
    And yes, it was non-pitting. I noticed a relation to inflamation higher up (hip/low back)
    Valentijn likes this.
  3. xchocoholic

    xchocoholic Senior Member

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    Since it's not present in the morning doesn't that mean it's kidney related ? Since our kidneys work best when we're sleeping. Mine do anyways.

    I don't have thus but responded because you said it wasn't there in the morning.

    I hope you figure out what it is. tc ... x
  4. Valentijn

    Valentijn Activity Level: 3

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    Wouldn't it take longer for the edema to start during the day then? Mine hits within minutes of getting out of bed.
  5. adreno

    adreno 3% neanderthal

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    Sodium/potassium ratio?
  6. xchocoholic

    xchocoholic Senior Member

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    I'm not sure. The fact that it happens so quickly should be a good clue for your doctor. I have OI but only get edema from certain foods.

    Have you tried taking anything or drinking water before getting up ? I can't think of anything else other than heart problems.

    hope you get some answers. tc .. x
  7. taniaaust1

    taniaaust1 Senior Member

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    Sure its not of the type some get with POTS? and which one sees commonly mentioned in legs? Blood pooling in the legs.

    I assume thou if it can pool in the legs.. maybe the same thing which causes it to pool in the legs (and not come up the body right) may happen in the arms too as the blood has to work against gravity there too???
  8. Valentijn

    Valentijn Activity Level: 3

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    Hrm, good point. The swelling is most noticeable in my wrists, which are typically lower than the rest of my arms most of the day.
  9. brenda

    brenda Senior Member

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    @ Valentijn,

    I have these pudgy wrists and found when I tried to find out what caused them, that it signified heart problems. I have swelling in the ankles as well which also signifies heart problems but it is worse if the wrists are involved too apparently. They go down when my weight goes down (stuck at the moment at 158 lbs on RS).
  10. Valentijn

    Valentijn Activity Level: 3

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    I'm pretty sure it's only a sign of congestive heart failure, etc, if it's pitting edema: meaning that if you poke it, a dent stays for a bit. Mine's non-pitting.
    brenda likes this.
  11. brenda

    brenda Senior Member

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    right. Mine are non pitting too.
  12. Ema

    Ema Senior Member

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    What about mucin? It causes non-pitting edema. And little jelly wrist mounds too...

    I'm not sure about the coming and going though. It generally seems to be more constant.

    But I did find one mention of it being under the control of the circadian clock and muscarinic acetylcholine receptors. Might also be gravity and fluid balance too...

    Maybe something to investigate anyway...
    Valentijn likes this.

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