Erythromelalgia like symptoms
Posted , 4 users are following.
Hi all. I am beginner here - and have had ET/PV diagnosed when I was 22/23 years old. I am 43 now. Most of the years I have had no symptoms - and have "survived" well on low dose aspirin.
I started with phlebotomies in 2013 due to rising rbc. Did it for a year or so - but as an active cyclist I chose to stop phlebotomies due to physical capacity.
Last year - in february - I had to start up again with phlebotomies as my hc was high. A week after first phlebotomy I started to feel warmth and tingling/needles in my feet at night under the sheet. Since then I have been struggling with feet becoming warm (or warmer), red and tingly/slightly painful whenever it is warm in the surroundings.
In colder surroundings, my feet and hands/fingers, become very cold and whitish.
Anybody else struggling with the same?
0 likes, 3 replies
angela_o..o sverre35326
Posted
Hello there.
I am a British woman and in my sixties. About this time last year the fingers in my left hand began to turn a dusky blue, and a few months later on snow white, whenever I went out into the cold. In April, I was diagnosed with PV and initially offered venesections and aspirin as treatment. I had high rbc, high wbc and high platelets. After about nine months or so the rbc and wbc had been reduced but, of course, the platelets remained high. The blueness/whiteness stopped though the haematologists were rather surprised that it lasted so long.
Over the same period I began to experience a strange sensation in my feet, as though they had soda water flowing through the veins rather than blood, if that makes any sense. I still have this odd feeling more or less all the time. I am lucky not to have any sensation of heat.
I don't know if that rings any bells with you. I have so far refused offers of hydroxycarbamide and just keep taking aspirin and going along for venesections every once in a while.
I hope others here will be able ro help you more.
richard96620 sverre35326
Posted
my feet was having tingling about 2 months ago, I soak my feed in warm water, I add about 1/2 cup of epson salt into that warm water. soak for around 20 minutes. I do this once a week. it works for me.....Richard Law Houston Texas
paul250360 richard96620
Posted
l'm going to give that a go.
l've been training for Oxfam - 63 mile walk in 48 hours - just walked 33 miles on the weekend (16 miles each day0 and both my feet are tingling and sore especially around my toes and balls of my feet.
l get the tingling in a mild form all the time but the increased walking has increased it.