kalamazoo Posted February 6, 2012 Report Share Posted February 6, 2012 I wake up with very swollen feet and hands, its very painful. Immediately after gwtting out of bed and standing my feet turn bright red and all the blood starts pooling really bad. Also, my hands are very swollen as well and I can barely make a fist. Once I'm up and moving for a littlw it goes away but its very uncomfortable. Does anyone else have this? I'm worried its not the POTS but maybe something else.... Quote Link to comment Share on other sites More sharing options...
heissovereign Posted February 6, 2012 Report Share Posted February 6, 2012 I have this too, mine get very hot too.. I don't know what is causing it. My face is also swollen and my varicose veins are always bulging at this time too. I hope we both get some answers soon. Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted February 7, 2012 Author Report Share Posted February 7, 2012 So do you know if this is caused my neuropathy or the POTS itself ? Quote Link to comment Share on other sites More sharing options...
heissovereign Posted February 8, 2012 Report Share Posted February 8, 2012 I honestly Am not sure, I would think neuropathy at least for me because my hands and face are swollen and tingly. It is very painful and my face makes me look like a puffer fish. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 8, 2012 Report Share Posted February 8, 2012 Sounds like high flow POTS - responds well to midodrine usually. Quote Link to comment Share on other sites More sharing options...
heissovereign Posted February 9, 2012 Report Share Posted February 9, 2012 Interesting thanks rama, I think one of the worst things about it is my hands will be so hot. My own daughter says my hands burn her. My doc mentioned me going on midodrine along with my florinef when I come back the 20th. What meds are you on kala? Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted February 9, 2012 Author Report Share Posted February 9, 2012 No Meds as of ring now, I see my cardio within the week but my neuro wanted to out me on calcium channel blockers, I was Leary about that. so, nothing at all. Quote Link to comment Share on other sites More sharing options...
rubytuesday Posted February 9, 2012 Report Share Posted February 9, 2012 I have the same. One reason I think is that even though I turn down heat and use ceiling fan, it's warm under the blankets the hubby (and me off and on thru the night) need. Secondly, I'm more of a side sleeper (with a little on stomach) but arms are up when I'm on my stomach (around my face/pillow) and closed against the body when on side. Heat and laying on extemeties will trap the fluids. I try (since I'm a light sleeper) to make every effort to keep my hands straight rather than curled when I sleep. I have osteoarthritis and find my hands/fingers/feet very painful in the morning but as you say, in osteoarthritis it usually wears off in a few hours. My rings are snug on my fingers when I first get up, but after I'm up, the fit is usually back to normal. Since I side/stomach sleep, the eyelids will be puffier in the mornings, too from the pull of gravity while reclining so many hours. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted February 9, 2012 Report Share Posted February 9, 2012 It was suggested that I take calcium channel blockers for my raynauds/pernio issues in my feet, but they the doc realized it would only worsen my OI. It sounds like you already have excessive blood flow in your extremities, so I wonder why the doc thought a calcium channel blocker would be helpful? My personal theory is that it takes awhile for my body to vasoconstrict normally in response to being upright. Many folks here have their worst OH first thing in the morning. Can you take your time getting upright? I like to have the house pretty cool in the morning and I expose my legs to the cool air for awhile to facilitate some vasoconstriction. Sometimes I put my compression on before I get up too. Another thing that has helped with vasoconstriction is spraying cool water on my feet and lower legs, and even placing them in front of a fan before I get up. For me, the compression hose can be helpful because they tend to soak up the water from the spray bottle and keep my legs cooler. Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted February 9, 2012 Author Report Share Posted February 9, 2012 As stupid as this sounds, its so hard for me to change me daily routine any more than I've already had to because of thos disease. Any time I change it just a little more it makes me so frustrated. My day revolves around, therefor my life does. It's so frustrating! I guess I need to finally give in and try these tips. I miss wearing my rings but can't because my hands are too swollen. Thanks ladies, glad to know I'm not alone in this symptom. Quote Link to comment Share on other sites More sharing options...
natalynn22 Posted February 10, 2012 Report Share Posted February 10, 2012 HI! My hands are always freezing all day long... but i to have the swollen hands that are red when i wake up in the am. My hands feel like they are going to explode like my skin is so tight.... My joints in my hands also are extremely painful while my hands are swollen... I dont know what to do about it, nothing has helped. It is only my hands not my feet or anywhere else. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 10, 2012 Report Share Posted February 10, 2012 Calcium channel blockers would worsen OI. Quote Link to comment Share on other sites More sharing options...
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