Derek1987 Posted December 6, 2018 Report Share Posted December 6, 2018 How do you know if blood is pooling in your legs? Is it just because your blood pressure lowers when standing or can you actually feel or see it? Or is there a test to see it? My specialist thinks my adrenaline just drains me to the point I faint. Which might be true. Today I was laying in bed and my hands and feet were cold but my palms were sweaty and my face was flushed. Quote Link to comment Share on other sites More sharing options...
green Posted December 6, 2018 Report Share Posted December 6, 2018 They found pooling in my legs at Dr. Stewart's lab in NY. How did they do it? I can't remember now if they used infrared sensors or had me submerge myself in a bath and measured displacement while standing vs. while seated. Hmmmm.... Quote Link to comment Share on other sites More sharing options...
Pistol Posted December 6, 2018 Report Share Posted December 6, 2018 When I get blood pooling my feet turn red and there is a white strip just below the toe line. My legs feel really heavy and tingly. All of this is relieved by lying down. Also - when my legs are dangling they turn color, it's called livedo reticularis. Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted December 6, 2018 Report Share Posted December 6, 2018 I imagine they were turn colors. Honestly I am not sure either. My oldest son and I have livedo reticularis as well. Doctor told me for my son it was normal. She said you have it too. What she should have said is it wasn't abnormal. Perfectly healthy people can have it. Quote Link to comment Share on other sites More sharing options...
p8d Posted December 6, 2018 Report Share Posted December 6, 2018 My legs feel heavy, sort of almost a bit painful and my feet/shins go red to purple. I also have livedo reticularis in both legs. BP goes down, HR goes up. It’s especially noticeable after a shower. Quote Link to comment Share on other sites More sharing options...
TaraMc9 Posted December 6, 2018 Report Share Posted December 6, 2018 Pretty much what everyone else said. The longer I stand, the more purple my feet get. Sometimes my legs will feel kind of heavy & achy or my feet will get a bit swollen, but not always. Quote Link to comment Share on other sites More sharing options...
Lily Posted December 6, 2018 Report Share Posted December 6, 2018 My feet turn a mauve-pink color. I tought that was normal (I'm standing on them, after all!) until my doctor pointed it out during the TTT. Quote Link to comment Share on other sites More sharing options...
Derek1987 Posted December 6, 2018 Author Report Share Posted December 6, 2018 Thanks for the answers everyone. With that being said, I think that rules out pots for me and isn't why I faint. I still have elevated heart rate instantly upon standing. Tingling in hands. I see stars. Nausea, fatigue. Heart palpitations, irregular heartbeat and fainting issues. In other words I guess I don't know what official diagnosis I might have. Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted December 6, 2018 Report Share Posted December 6, 2018 2 minutes ago, Derek1987 said: Thanks for the answers everyone. With that being said, I think that rules out pots for me and isn't why I faint. I still have elevated heart rate instantly upon standing. Tingling in hands. I see stars. Nausea, fatigue. Heart palpitations, irregular heartbeat and fainting issues. In other words I guess I don't know what official diagnosis I might have. You don't have to have blood pooling to have POTS. Depends on your underlying cause. Quote Link to comment Share on other sites More sharing options...
WinterSown Posted December 6, 2018 Report Share Posted December 6, 2018 I can feel it flood into my legs. Take off your socks and look at your tootsies; mine are very very flush. If I lay down on my back and put my two feet up straight the situation can correct itself in a few minutes. Your fingers may also look very flush, your hands may hurt. Blood pooling doesn't have to be only in your legs, it can be in your arms and sometimes gut and pelvis. Quote Link to comment Share on other sites More sharing options...
Derek1987 Posted December 6, 2018 Author Report Share Posted December 6, 2018 21 minutes ago, WinterSown said: I can feel it flood into my legs. Take off your socks and look at your tootsies; mine are very very flush. If I lay down on my back and put my two feet up straight the situation can correct itself in a few minutes. Your fingers may also look very flush, your hands may hurt. Blood pooling doesn't have to be only in your legs, it can be in your arms and sometimes gut and pelvis. Interesting. When I did my tilt table test and they rasied me to the standing position, my hands were extremely red and my hands felt different. My wife pointed it out to me. I guess I could describe the feeling like my head felt when the table tilted backwards and I felt the pressure in my head. It might be happening in my stomach too. When I participate in being a normal human being by standing and going to a couple of places, my stomach seems to get irritated. I have a weird sensation going straight down my stomach in a line. That might not be blood pooling though. Idk. Quote Link to comment Share on other sites More sharing options...
Derek1987 Posted December 6, 2018 Author Report Share Posted December 6, 2018 2 hours ago, WinterSown said: I can feel it flood into my legs. Take off your socks and look at your tootsies; mine are very very flush. If I lay down on my back and put my two feet up straight the situation can correct itself in a few minutes. Your fingers may also look very flush, your hands may hurt. Blood pooling doesn't have to be only in your legs, it can be in your arms and sometimes gut and pelvis. Another question since you let me know about blood pooling in other areas. When I was being lifted into the standing position, not only did my hands get red, my face was flushed, hot. Do you think that's related or just another symptom of my condition? Quote Link to comment Share on other sites More sharing options...
WinterSown Posted December 6, 2018 Report Share Posted December 6, 2018 58 minutes ago, Derek1987 said: Another question since you let me know about blood pooling in other areas. When I was being lifted into the standing position, not only did my hands get red, my face was flushed, hot. Do you think that's related or just another symptom of my condition? Skin flushing is controlled by the ANS. If we are outside and it is cold and windy our body responds by sending more blood to our cheeks to warm our face. I've come in from a day out in the snow, my feet near white or blue and got in a warm shower--a few minutes later my feet are purple red and stinging too--paresthesia, aka pins and needles, can hurt real bad. Skin flushing is a reaction to stimuli. It is controlled by the autonomic nervous system and ours are haywire. Sometimes our bodies work right and sometimes they don't. Start keeping a diary of your reactions. Take pictures with your phone. Do you have a book of plain white ruled school paper? It's wonderful for showing size and color. On the page right down the date and time, your symptoms, numbers, whatevs for that moment. Put your hand or foot on the page and snap a picture. For consistency try to always be in the same location with the same light. Next time use a clean page for your notes and latest photo. You now have a double diary. You have the notes on your pages with photos to back it up. Showing how you flush, when it happens, events, etc, can help your doctors get to the bottom of this and get you the care you need. Patient diaries are very helpful--especially when you back them up with photos that can't be denied. Good luck! Quote Link to comment Share on other sites More sharing options...
Lily Posted December 7, 2018 Report Share Posted December 7, 2018 Remember that there are several different mechanisms that cause the same set of symptoms (which we call POTS). For example and not all-inclusive: some people have a lot of blood pooling, others have weird reactions to histamines, others have low blood volume. The commonality is a malfunctioning autonomic nervous system. So you could have POTS and not have blood pooling. Quote Link to comment Share on other sites More sharing options...
Pistol Posted December 8, 2018 Report Share Posted December 8, 2018 Yes - I second what Lily said - you do not have to have NOTICABLE pooling in order to have POTS. Sometimes dysautonomia symptoms stem from vasoconstriction and other times from vasodilation and then again other times from both … what matters is the degree of dysfunction and the effect it has on your life - as well as what meds help. Quote Link to comment Share on other sites More sharing options...
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