Pooling In Arms - Solutions?

[peregrine]

My left arm tends to pool blood quite nicely - it gets numb and tingly all over, feels heavy, swells slightly, occasionally is mottled; squeezing from fingers to elbow with the other hand helps, as does raising it above my head. Tends to happen when I'm upright and the arm is dangling down. My QSART on that arm was positive/slightly abnormal, so there's probably some peripheral denervation there.

My neurologist seems to think it's a vascular problem only (why, I have no idea, she knows my legs pool and says it's the POTS, of course), and that I should talk with my primary care doc. This seems silly to me, honestly - pooling is pooling, it seems to be postural, etc. She seems to think it's not a big problem - it is more discomfort than anything, but I wish it would stop.

Are there solutions for arm pooling? I know that Brightlife sells some lymphadema products, but I don't know if they're safe/effective for blood pooling in POTSies or what level of compression would work (same as my stockings? etc).

[HopeSprings]

Confused. She thinks the pooling is due to a separate vascular problem and not a result of neuropathy? My understanding of how neuropathy affects us is that because of nerve loss/damage, the nerves can't signal the blood vessels to constrict -->pooling. I think pooling is a huge problem, if not the main problem - surprised at the things she's saying.

[sue1234]

My first thought from your first sentence about "my left arm pools quite nicely" was that there might be something wrong with your circulation to that arm (probably thinking along the lines of your POTS doc). I don't know much about it, but one can have something where the 1st rib somehow blocks good circulation to the arm, and can thus cause venous pooling or something like that. The clue here is that it happens in one arm only. If I were you, I would go ahead and see my PCP about it and make sure there isn't something going on with the circulation to that one arm.

I think it is called thoracic outlet syndrome. It seems someone here has that on their signature line--maybe they'll pop in and discuss it with you.

[peregrine]

I do have some thoracic outlet issues on my right side from a cervical (extra) rib - mostly my arm wakes up being completely numb (as in, no muscular control even) when I wake up a few times a year. I guess this might be TOS - it feels a little different, though. But yes - perhaps something to ask my PCP about.

[ramakentesh]

midodrine