RichGotsPots Posted November 22, 2011 Report Share Posted November 22, 2011 Does anyone have aches in their feet after standing awhile? Mine feet like they pulse if I stand for more than 5 minutes. Also the inside of thigh (especially closer to my knee) can feel like they ache from nerves or something. I'm worried it's some kind of Deep vein thrombosis (DVT) or something? Is this because of pooling? How do I get tested for leg blood pooling? Has anyone had these type of aches or pulses? They really make me fatigued which intern bothers my breathing..Thanks! Rich Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted November 22, 2011 Report Share Posted November 22, 2011 It could be from pooling. I dont experience this because I dont get pooling in my legs, but this may be why. Are your legs warm and flushed to touch, or cold and bluish when you stand? Do you get that red patchy skin from increased filtration? Quote Link to comment Share on other sites More sharing options...
louloutinks Posted November 22, 2011 Report Share Posted November 22, 2011 Hi RichI get this too - it is an intense burning kind of ache in my legs and feet which makes my legs feel weak too - and I get blood pooling Quote Link to comment Share on other sites More sharing options...
rubytuesday Posted November 22, 2011 Report Share Posted November 22, 2011 Mine will really burn thigh on down and legs will feel weak but like lead at the same time and feet and legs will ache. My feet and legs will feel ice-cold and it occurs sometimes when standing after laying in bed or sitting on sofa with the legs elevated. It seems to happen worse after the day after I've taken water pill. I am on Mestinon and Midodrine for OI and Bumex for fluid retention. When feet are cold they seem whitish blue but when shower they get purplish black. I was told by cardiac specialist in dysautonomia the purple feet (it was cold in his office and I'd had long wait in waiting room) was blood pooling. Plus I have Delta granule storage pool deficiency (platelet disorder) that may play a role in my blood being 'cold'. These meds make me feel like ice water is running through my veins. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted November 24, 2011 Author Report Share Posted November 24, 2011 Any idea how we test for pooling? Quote Link to comment Share on other sites More sharing options...
pulp Posted November 25, 2011 Report Share Posted November 25, 2011 My uncle has peripheral neuropathy and he has RLS from that and can't really stand still for any amount of time, I think what he describes sounds similar to what you are describing. He has lost sensation too though. Maybe that'd be something to look into? Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted November 27, 2011 Author Report Share Posted November 27, 2011 My uncle has peripheral neuropathy and he has RLS from that and can't really stand still for any amount of time, I think what he describes sounds similar to what you are describing. He has lost sensation too though. Maybe that'd be something to look into?Whats RLS? Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted November 27, 2011 Report Share Posted November 27, 2011 My uncle has peripheral neuropathy and he has RLS from that and can't really stand still for any amount of time, I think what he describes sounds similar to what you are describing. He has lost sensation too though. Maybe that'd be something to look into?Whats RLS?Restless Leg Syndrome.I get pretty bad blood pooling and my turn red/purple-ish and feel super heavy and hurt.. almost to the touch. When I lay down, they are very white and ice cold... I have just learned to go with the flow of it and chalk it up to dysautonomia. For me at least, if it were something else, I think it would have shown up now after 4 years. Quote Link to comment Share on other sites More sharing options...
rubytuesday Posted December 1, 2011 Report Share Posted December 1, 2011 Any idea how we test for pooling?Rich,The cardiology specialist in the Dysautonomia/Cardiac Center where I went just took one look at the purple feet (I'd also had negative abd./pelvic ultrasound and dopplers of the lower extremeties that were negative). They change color even worse when I would go from lying to sitting and sitting to standing or lying to standing. You can also see fairly deep marks in skin (like where the bands of your socks are). I take a 'water pill' and that helps move the fluid that pools with the blood. I have EDS so my veins and muscles in my legs are very compromised--the connective tissue that envelops/attaches everything within the body is lacking in components necessary to hold things securely in place. My cardiac specialist is well versed in EDS and he explained the way it was contributing to the blood pooling with my orthostatic hypotension and autonomic nervous system failing me. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted March 28, 2012 Author Report Share Posted March 28, 2012 It could be from pooling. I dont experience this because I dont get pooling in my legs, but this may be why. Are your legs warm and flushed to touch, or cold and bluish when you stand? Do you get that red patchy skin from increased filtration?I only theorize that I have pooling because of the aching I get under my heal. I wear compression stockings all the time now and it helps too. But I really have no idea if it's pooling or what. The legs don't seem warmer or colder that usual only when I get rushes my hands and feet are freezing. I also don't see any blushing or patchy skin when standing. What I do feel is that when I'm standing for awhile it helps to stand on the sides of my feet for a minute and I can feel the blood pool to the side and it takes some of the aching away. it's a strange feeling. Also tried the other day to put my hips and legs straight up on the air and I can feel all the blood pool out of my legs, didn't help me to feel any better though.. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted March 28, 2012 Author Report Share Posted March 28, 2012 What's strange to me is I wear 30-40 compression stocking that are pretty tight and the feet still ache. If it is pooling why are the feel still achy? Granted it's a little better when I wear them, but I expected it to get much much better if it was just pooling.. Quote Link to comment Share on other sites More sharing options...
Trach Posted March 29, 2012 Report Share Posted March 29, 2012 Rich, I have the same exact pain as rubytuesday (and the pain you are describing). I have pooling in my legs and had Doppler tests and EMG's to try to address the cause of the pain. I did not find out the answer until I was diagnosed with EDS hyper mobility and saw a pain specialist. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted March 30, 2012 Author Report Share Posted March 30, 2012 Rich, I have the same exact pain as rubytuesday (and the pain you are describing). I have pooling in my legs and had Doppler tests and EMG's to try to address the cause of the pain. I did not find out the answer until I was diagnosed with EDS hyper mobility and saw a pain specialist. How do you get diagnosed with EDS, I saw a Rheumi and she didn't test me for anything? I'm also not flexible at all, does that mean I don't have it? Quote Link to comment Share on other sites More sharing options...
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