Bec1978 Posted April 9, 2017 Report Share Posted April 9, 2017 Hello I'm new here, just diagnosed a month ago with POTS after two weeks in acute cardiac care. I'm taking fludrocortisone once daily (100mcg), drinking 3L of water, and eating a lot of salt. I'm also using nuun tablets on bad days and trying hard to exercise using resistance bands lying down. Apart from the tachycardia, breathlessness, and fatigue, my main problem is my veins. I have bulging veins on the backs of my hands that really hurt, and I've had the same on the top of one foot that was sore enough to wake me at night. The foot one was a pulsing pain, as if it hurt each time blood pumped through, but the back of my hand is a constant, tight pain. It feels almost like I have an IV cannula inserted. I'm not sure if this is a side effect of the fludro or if it's the amount of fluid I'm drinking, or if it's a POTS symptom. It's very uncomfortable though and the only thing that seems to help is applying an ice pack, which isn't convenient when I'm out! Has anyone had experience with this? Thanks. Quote Link to comment Share on other sites More sharing options...
BuffRockChick Posted April 9, 2017 Report Share Posted April 9, 2017 My hands do that when I stand up or get cold. Once it starts it persists, even after other symptoms stop. A hot bath works for me. Calf pressure sleeves worked wonders for me, so I'm probably going to get compression arm sleeves that go over the hand too. Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted April 9, 2017 Report Share Posted April 9, 2017 Hi yes i have this. Not 24/7 but when im having a flare or am hot. I was diagnosed with erythromlelgia years ago and had the really red hot extremeties also back then. I currently don't get that often, now it's just my veins. Can't take hot showers cause my feet and knees hurt and swell like i can feel the blood pooling. When I'm hot i cant have my hands below my heart or they pool and feel like they're going to explode. I can barely drink/eat hot foods cause i get flares. I dont think its pots personally. I'm going to UW in july so hopefully they can give me answers. I also have insulin resistance Quote Link to comment Share on other sites More sharing options...
yogini Posted April 10, 2017 Report Share Posted April 10, 2017 If you didn't have the symptom before you started florinef, or don't remember, I would ask your dr. Florinef has a lot of side effects. Quote Link to comment Share on other sites More sharing options...
headhunter Posted April 10, 2017 Report Share Posted April 10, 2017 This is my main symptom when I get warm--it is painful, but it is more the unwell type feelings that accompanies these symptoms that hurt me--some type of severe discomfort that I cannot explain, and yes ice constricts these veins and solves it--as does cold weather Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted April 11, 2017 Report Share Posted April 11, 2017 ^ I'm the exact same way. Quote Link to comment Share on other sites More sharing options...
Trav Posted December 6, 2019 Report Share Posted December 6, 2019 @kalmazoo , What was the outcome? Have you been able to resolve this? I have the same ailment . Thanks! Quote Link to comment Share on other sites More sharing options...
Jwarrior77 Posted December 10, 2019 Report Share Posted December 10, 2019 Funny I posted a topic about this a week ago with my veins dilating in my hands,arms,and feet. At first it was somewhat painful now my vessels are used to it I think. My hand also get really hot when this happens. Still don't know the reason. Quote Link to comment Share on other sites More sharing options...
Pistol Posted December 11, 2019 Report Share Posted December 11, 2019 @Jwarrior77 - sounds like it could be excessive vasodilation. This happens to me sometimes. Quote Link to comment Share on other sites More sharing options...
Jwarrior77 Posted January 5, 2020 Report Share Posted January 5, 2020 @Pistol Do you think excessive histamine release in the blood could cause this? I know histamine can dilate the vessels and lower blood pressure so could it possibly do this too? Or is it just the autonomic system going wonky again? I personally think there is some sort of chemical or hormone getting released in the blood stream that is causing this. Quote Link to comment Share on other sites More sharing options...
Pistol Posted January 5, 2020 Report Share Posted January 5, 2020 @Jwarrior77 - I suppose it can but I am not sure. When I had allergic reactions to insect bites my hands and feet turned red and hot - probably from histamine. Quote Link to comment Share on other sites More sharing options...
aramel1234 Posted January 10, 2020 Report Share Posted January 10, 2020 (edited) can it be eds ? Edited January 10, 2020 by aramel1234 Quote Link to comment Share on other sites More sharing options...
David heck Posted May 5, 2020 Report Share Posted May 5, 2020 On 4/8/2017 at 7:02 PM, Bec1978 said: Hello I'm new here, just diagnosed a month ago with POTS after two weeks in acute cardiac care. I'm taking fludrocortisone once daily (100mcg), drinking 3L of water, and eating a lot of salt. I'm also using nuun tablets on bad days and trying hard to exercise using resistance bands lying down. Apart from the tachycardia, breathlessness, and fatigue, my main problem is my veins. I have bulging veins on the backs of my hands that really hurt, and I've had the same on the top of one foot that was sore enough to wake me at night. The foot one was a pulsing pain, as if it hurt each time blood pumped through, but the back of my hand is a constant, tight pain. It feels almost like I have an IV cannula inserted. I'm not sure if this is a side effect of the fludro or if it's the amount of fluid I'm drinking, or if it's a POTS symptom. It's very uncomfortable though and the only thing that seems to help is applying an ice pack, which isn't convenient when I'm out! Has anyone had experience with this? Thanks. Mine do that too Quote Link to comment Share on other sites More sharing options...
Pistol Posted May 5, 2020 Report Share Posted May 5, 2020 @David heck - bulging veins in hands and feet are quite common in dysautonomia and usually are caused by excessive dilation of blood vessels. It also happens to "normal" people when they are hot ( like after a hot shower ) or after exercise, all caused by vasodilation. I get this frequently when my usually cold hands and feet suddenly warm up. Check your BP when this happens and see if it is low - that often occurs along with it. Quote Link to comment Share on other sites More sharing options...
TCP Posted May 24, 2020 Report Share Posted May 24, 2020 I've got more bulging veins now that I had a few years ago. I have them around my anus (TMI), hands, feet and arms. They can get very painful. Quote Link to comment Share on other sites More sharing options...
Claire C Posted September 20, 2020 Report Share Posted September 20, 2020 On 4/9/2017 at 9:03 AM, kalamazoo said: Hi yes i have this. Not 24/7 but when im having a flare or am hot. I was diagnosed with erythromlelgia years ago and had the really red hot extremeties also back then. I currently don't get that often, now it's just my veins. Can't take hot showers cause my feet and knees hurt and swell like i can feel the blood pooling. When I'm hot i cant have my hands below my heart or they pool and feel like they're going to explode. I can barely drink/eat hot foods cause i get flares. I dont think its pots personally. I'm going to UW in july so hopefully they can give me answers. I also have insulin resistance Hi Kalamazoo. Hope you're well. Did you ever receive a diagnosis for this? Thanks. Quote Link to comment Share on other sites More sharing options...
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