JenniferInOhio Posted October 13, 2007 Report Share Posted October 13, 2007 Just wondering...there always seems to be a new symptom popping up Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted October 14, 2007 Report Share Posted October 14, 2007 I know I've read before that POTSies often have cold hands and feet, so I'd suppose that means less circulation gets where it needs to go.It seems like that would make sense if many of us have low blood volume. It's going to stay where it's needed the most, I would think (heart, lungs, etc.)Mine look that way sometimes.Amy Quote Link to comment Share on other sites More sharing options...
masumeh Posted October 14, 2007 Report Share Posted October 14, 2007 Yes, there are circulation problems to the extremities (fingers, toes). this is the same reason why they get cold. I get this a lot..and never really noticed until it stopped when I took medication (the coldness faded simultaneously). Quote Link to comment Share on other sites More sharing options...
willows Posted October 14, 2007 Report Share Posted October 14, 2007 I was diagnosed with circulation problems long before I was diagnosed having pots , I have Raynaud's and heart problems which means not only my feet/toes go grey/blue but my hands /nails my nose and my lips if I'm very bad .Cold weather is horrible as I feel so much pain , as well as if I go onto fridges or freezers , which I only do with big insulated gloves on , hat , scarf and a scarf over my mouth , as for hot weather is just as bad for me .Like diabetics I have to be very careful with my feet and toes because sometimes they can get so cold I cannot feel them , so every night I make a point of putting speacil cream on my feet and toes to keep them soft and cut free as well as making sure my toe nails are all cut correctly .Short boots most of the time on my feet except in very hot weather , in very cold weather I just dont bother going out as the cold effects my lungs and I cannot breath properly which of course makes me pass out .I have at least 15 pairs of gloves , about 20 + hats of assorted styles and tons of scarves , as well as 10 pairs of assorted boots from short Velcro ankle ones to knee high fully lambswool lined ones . I keep a pair of boots in the car as well as a set of hat, scarf and gloves , another full set at my friends homes , and in handbags always gloves ( those small magic stretch gloves ) and always a full head, hand , neck and foot set by the front door .So far I haven't had one chilblain and my feet have kept well , my fingers have suffered somewhat and I did get a small amount of frostbite a couple of years ago , that was just so painful . So guys if you are getting pain in your fingers toes and nose be like the boy scouts ' be prepared '........thats the answer and you can't go Wong ! Willows. Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted October 14, 2007 Report Share Posted October 14, 2007 Yes, another one of those wonderful circulation issues popping up. But, if your hands hurt or you become worried, talk with your dr. Because it could always be Raynauds or something on top of the POTS. But, the change in colors is often due to a decrease in ambient temperature, or for some other reason of decreased circulation.Good Luck! And stay warm (but not too warm)! Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted October 14, 2007 Report Share Posted October 14, 2007 I just saw that you have anemia listed... I think that you can also have whiter fingertips etc. if you are low in iron. Just a thought! Quote Link to comment Share on other sites More sharing options...
JenniferInOhio Posted October 14, 2007 Author Report Share Posted October 14, 2007 I figured as much.Yes, I had anemia about a year ago. I have low iron, but it is still in the "normal" range. I think it must be because we have had cooler weather here in N. Ohio. My fingers and toes are always cold. Although, I have noticed that my fingernails still look weird even when I'm all toasty warm. Quote Link to comment Share on other sites More sharing options...
juliegee Posted October 15, 2007 Report Share Posted October 15, 2007 Hi Jennifer,Very cold fingers and toes were my first "potsie" symptom. I often get chillblains on both my hands and feet. I even have episodes where I simply can't get blood to go to the ends of my fingers. Once, I had the middle finger of my right hand turn purple/black. I had noticed that it was cold, then over a few hours- I lost feeling to it. When I looked down, it was very discolored. I was hospitalized for 3 days and put on massive amounts of blood thinners. The ER docs were convinced that my heart had thrown a blood clot. After many, many tests, I was declared perfectly healthy (no blood clot!) with a slightly pinker finger. Dr. Rowe at Hopkins describes the cold hands and feets of those with OI's as being caused by a lack of circulation. Blood gets to our extremities and pools there & doesn't properly circulate. When the blood just sits there, it cools much more quickly than when it's circulated properly. Many of us also have Reynaud's (where blood vessels pinch off circulation) and the combination is dangerous.Willow has the right idea with lots of preventative care. Taking a daily aspirin has helped to thin my blood and seems to have helped the blood circulate a bit better. I saw on the story section of this site where a patient claimed that a daily aspirin "cured" POTS for her. Interesting!Best of luck with your purple fingers. I hope it doesn't progress to something worse.Julie Quote Link to comment Share on other sites More sharing options...
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