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Blood Pooling?

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Does blood pooling wax and wane? I know I'm different since my nervous system is ok and I'm just dealing with cytokine issues dialating my veins, but some days I have very noticiable blood pooling in my legs and other days they look pretty much normal...I'm not doing anything different to induce these changes. POTS seemes to be a crazy disease but throw lyme in the mix and wow...

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My pooling varies from day to day both in severity and where I seem to have pooling. Sometimes it's in my legs, others in my hands, sometimes it's abdominal, and sometimes it's all 3.

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Ive noticed a lotof pooling in feet lately. Today, getting bloods taken I looked down, feet all bloody purple.

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Sorry, if this question sounds very naive - but how do you know that (and especially when) you have blood pooling? Is it possible to know without specialised tests...??

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Goschi, when my pooling is bad my feet and legs and sometimes hands turn dark purpley colour and sometimes feel painful (like you would expect when way too much blood is being pushed into them). I can often tell how much I'm pooling by looking at how purple my feet are. But occasionally I used to have times when they didn't turn purple so quickly or maybe only badly after I'd just got out of bed in the morning rather than any time during the day, and that's what I mean by saying that my blood pooling isn't as bad. Of course the blood is probably still pooling, just maybe more slowly. I hope that answered your question?

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I, too, can see the color of my legs and hands change when I have pooling. The change in color is actually how my pots neuro recognizes pooling as well. He makes specific notes on it during ttt and during poor man ttt which he conducts at every appt. In addition to just a simple change in color, my palms also get a very mottled look to them....it's quite striking to see. I also have some spider veins in my lower legs and near my knees that become very purple/blue and very visible compared to when I'm supine.

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Are any of you that are having blood pooling issues athletes? I am a competitive runner and this sympton is probably the worse thing I am dealing with pertaining to my POTS. About 200 meters in to my run, my legs start to tingle and then become numb. I also experience painful cramping in my hips and upper portion of my legs. It almost feels like I need a shot of WD40 in my hip joints, they are so tight. My mind is telling my legs to run faster, but they are not capable of running the speed I used to be able to run. I am on Atenolol and Florinef and have tried Midodrine, which is a vasoconstrictor, but nothing seems to help. Please let me know if any of you are experiencing this problem and is there a solution or a fix for it?

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Warrie,

I think what will be helpful depends on what is causing the blood pooling. For example, I have EDS and have had doppler on both of my legs. I have significant venous insufficiency in my calves which is attributed to the typical flaccid veins seen in EDS patients. For me, the only fix is compression stocking to artificially keep the fluid out of my legs. It does help to keep my leg muscles strong as that helps pump blood and fluid out of my legs when I'm moving. Have you spoken to your doctor's about finding the etiology of your blood pooling?

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Thank you, Katybug for your response. I totally agree with you and am in the process of finding the underlying cause for the blood pooling issue. How were you diagnosed with EDS? Was there any particular test performed other than the Doppler you had? Also, what kind of doctor are you seeing to treat your POTS?

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Hi Warrie,

EDS is diagnosed based on taking family history, medical profile, clinical examination, and then possibly a genetic blood test if they suspect the 2 types of EDS that have tests available. It is most commonly diagnosed by a geneticist although some rheumatologists are versed in diagnosis. If you want information about the diagnostic criteria for each type of EDS, www.ednf.org is a good resource. To check for venous insufficiency (which we were doing because I have positional numbness and tingling in all 4 limbs) we did dopplers. We did my legs last year and my arms just this month so I don't have the results from my arms yet. I have also had ultrasound and CT angiography to check that there are no blockages or narrowing in my jugular and carotids. I see a neurologist who specializes in POTS and migraines for my pots and migraines. I also see a cardiologist, geneticist, immunologist, neurosurgeon, and my PCP. They each take part in helping me but I do coordinate everything.

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