EM Feet Increasingly Becoming Dark Purple While Sitting

I have EM and during the last 2-3 months my feet and lower extremities have become increasingly dark purple while sitting. The difference has been notable and sometimes my toes will appear almost blueish black. This alternates with redness/swelling/churning caused by EM.

My primary care doctor recommended I see a vascular surgeon who tested the health of the blood vessels in my feet and legs using a doppler ultrasound. He said the blood vessel health appeared fine and that my symptoms of EM and also POTS were likely caused by autonomic dysfunction (Dysautonomia) based on other tests which ruled out other conditions like lupus and MS, and that both were contributing to the alternating redness/swelling and purple/pooling in my feet.

The daily pattern is feet normally pale in the AM (with some residual red EM flare), dark purple while sitting during day/evening, then bright red swelling/churning when laying down in the evening/through the night.

Apparently, Postural Orthostatic Tachycardia Syndrome (POTS) can cause purplish discoloration in the feet when standing or sitting. I am sharing here in case others experience similar symptoms or discoloration.

I have similar experience. EM started in my hands about two years ago, initially it was confined there and was mainly flares. However, they started to become purple/blue when not flaring. My feet began flaring a few months ago, and when not flaring (for example just sitting at my desk at home),
I notice they become blue/purple.

I start Mexiletine in a few weeks, I will update you on how that works out.

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Yeah, my feet are the same. But, the purplish colour stops at my ankles which looks more than alittle strange.
It was pointed out by my husband as I try to ignore as much as I can. I use this as coping strategie.

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I also have EM and pots and my feet do this, so don’t worry too much its ‘normal’

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Hi Anthony, I’m interested in how things go with Mexiletine in March, I may go the same route in the near future.

Hello SunnyDay, hello everyone.

I’ve been having the same stuff as you for a looooong time. Pots and EM really perplexes doctors because it’s very complicated, and they feel bad that they can’t help you.

It’s a good thing that you recorded precisely the symptoms that you can observe. It must be a bit scary to see your feet becoming dark purple. I also have POTS and EM but my feet only get slightly discoloured. After years of weird symptoms and helplessness, I believe that mine is caused by belly problems which I still don’t know what they are and some malabsorption. All my tests were always coming out good, i only had small stuff that were off in my blood results, and it turned out because I had on and off digestive problems.

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