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Blood Pooling In Legs:


LindaJoy
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Hi, everyone,

Just wondering. I've read where most POTS people have blood pooling in their legs, turning their lower legs red. I do that, as well, only, it's not just my lower legs that turn, and they don't turn just red. Both of my legs turn, and they turn purple. Today, as my husband and I were sitting outside, my husband said my legs had a blue tinge to them.

Anyone else? Oh, and mine turn within seconds of being on my feet. I don't waste time, let me tell ya! Within seconds, it looks like I'm carrying Papa Smurf and Grover on my legs!

Just wondering if anyone else experiences this. Sorry if this issue has already been addressed. My search bar isn't working for some reason.

Lindajoy

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Hi Linda,

the blue/purple discoloration you're describing is called "acrocyanosis" and occure when blood pools in the lower limbs. It can (as in your case) affect the whole leg. Reasearchers aren't exactly sure of the mechanism of the colour change but it may be due to reduced blood supply to the skin of the legs due to the venous pooling.

I have posted before and included a couple of pictures. If your DINET search isn't working, try this: go to Google, click on pictures and type "acrocyanosis" - on the 2nd or 3rd page there are one or two good pictures (amongst the usual rubbish that comes up).

Flop

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I have this problem too, within a matter of minutes, just sitting without my stocking and they get sore to the touch. It affects my whole legs as well as my hands, elbows and I think sometimes my face. Frequently by the end of the day my nose and sometimes my cheeks get blotchy and purple as well.

Madeline

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I was complaining of leg discomfort during exertion,TO MY md WHO LOOKED AT MY LEGS Which WERE MOTTLED AND ORDERED AN Artreial DOPPLER. Sorry about the caps.

Haven't gotten it yet. I know "WE" get that because of Dysautonomia but Drs. want to check out the other possibilites too, and rightly so.

good luck

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I have the same problem. Then if I am on my feet too long they begin to hurt really bad.... best wishes to you.

lisa

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Hi sister smurf!

My legs also turn a purplish/blue all the way up to my thighs, and it happens really quickly as well. On top of that, my hands and arms change to the same color (the backs of my fingers particularly are a very solid blue!). If I lift my arms over my head they go back to normal, hence, blood pooling. My lips also turn blue when I am upright. I just consider it an outward manifestation of my color personality! :blink:

A co-worker saw my arm and hand change color during a meeting, and he pulled me aside and said, "I saw your arm turn grey!" I shrugged and said, "Oh, that's just blood pooling... it means blood isn't getting where it needs to go. That's normal." He just kind of stared and said, "Oh, umm, okay."

It's amazing what we start to consider "normal" and shrug off after a while. Anyone else would have been driving to the ER or calling a doctor in panic. This is what cracks me up when people think chronic illness is psychological. If anything, we ignore our symptoms much more than healthy people!

Wishing you all the best,

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Thanks, everyone, for your experiences. Glad I'm not the only one "so blue" a lot.

Ummmm, what's low-flow POTS? I think that means that my blood vessels constrict so that blood doesn't flow as easily as it should? If this is correct, what can be the causes of it? I know, if we knew that, we'd know why we have POTS, right? But, are there any theories, anyway?

Thanks, again.

Linda

(I like the Sister Smurf address! Too funny.)

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Here's the link where he talks about purple people:

http://www.nymc.edu/pubs/Chironian/Spring2003/blood_circ.asp

now that i go back and read it, i see that he doesn't identify either group in this one... the reason why i thought that is b/c I went to see him, Im a purple person and I have a vague memory of saying I was low-flo, I could be wrong though...I was on the tilt table at that time :0

Madeline

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I'm definitely low-flow. But I wouldn't characterize myself as purple. When I was really sick, I was sort of a grayish blue in the face. When I started getting much better, one of my neighbors saw me out walking and said, "Laurie! You're standing! And you're pink!" Why is it that laymen have been able to tell at a glance how sick or well I am? I wish more doctors could.

http://www.nymc.edu/fhp/centers/syncope/ci...ots_and_CFS.htm

1) High Flow CFS/POTS is characterized by normovolemia, peripheral vasodilation, and increased peripheral blood flow, cardiac output and microvascular filtration. Evidence indicates a mechanism of defective adrenergic-mediated vasoconstriction associated with post-viral peripheral neuropathy. Therefore, investigations of high flow POTS will not be pursued further in the current proposal.

2) Normal Flow CFS/POTS is characterized by normovolemia and normal supine heart rate, peripheral resistance and blood flow. Upright, splanchnic vascular regulation is abnormal producing venous pooling, intense peripheral vasoconstriction and acrocyanosis. Patients are often hyperflexible and may fulfill criteria for the Ehlers-Danlos Syndrome.

3) Low Flow CFS/POTS is characterized by mild hypovolemia and general decreased regional blood flows related to defects in local blood flow regulation, most notable in the dependent parts of the body and the cutaneous circulation. Peripheral vasoconstriction decreases when upright. The phenotype is distinguished by generalized pallor, cool skin, and often marked resting tachycardia.

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LThomas, do you know of anywhere that dr. stewart has listing of how to treat the different types? I've never been able to find it on the his site?

Also do you know of anyway to explain the different types is an easier way to understand? I've always been confused by them?

Madeline

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I have no idea about whether treatment approaches should differ. Here's my take on what the different types mean:

1. High-flow POTS. You have a normal amount of blood, but your blood vessels are so dilated that your heart is working overtime to keep your pressure up. The problem might be that your blood vessels can't constrict properly, because a virus has damaged the nerves that are supposed to tell your blood vessels to constrict.

2. Normal-flow POTS. You have a normal amount of blood. When you are lying down, you have a normal heart rate and normal circulation. But when you stand up, the blood vessels in your tummy don't tighten up as they are supposed to, so the blood tends to collect in there, and it doesn't get back to the heart properly. In your hands and feet, the blood vessels tighten so much that they turn blue.

3. Low-flow POTS. You don't have quite enough blood, and what you have doesn't circulate properly. You look like you've just seen a ghost: you're pale and cold, and your heart is racing. Your blood vessels in your arms and legs don't constrict properly when you stand up.

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Okay, now I'm really confused. Just got back from having surgery on Monday for my pancreas, so not surprised that my thinking is cloudy.

Anyway, I thought that the low-flow people were the purple people. I don't have enough blood, according to Dr. Fouad at the Cleveland Clinic, yet I don't turn pale, like the low flow people, I turn purple, like the normal flow people with belly problems.

Could we just have a confused system, and leave it at that? :)

Lindajoy

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hi lindajoy...my legs turn purple all the way to my hips... Uhm and they get a dark purplish reddish almost balck looking on some spots on my feet and ankles...Uhm i wear knee high compressions.. and even with those on my upper legs will still turn deep red where there isnt compressions.. tho not quite as bad if i didnt have any on at all...

do your feet feel like they are swelling when you get pooling? my will feel swollen but acutally arent...its weird!

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Hi, Dizzygirl and everyone,

YES, it's funny you should ask. My feet will feel swollen, but when I grasp them to see if they feel squishy, they don't, they're still bony. It's so much fun, isn't it?! NOT!

And, my feet will turn almost black, as well. No one, not one doctor at Cleveland Clinic, Mayo, or anywhere in-bwtween has been able to tell me why. My one doctor last year just said, "Impressive." I didn't find it as impressive as I did disturbing. Now I'm used to it. It especially happens when I'm in air conditioning.

Lindajoy

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