My mom has been diagnosed with EM and her feet seem to be getting worse. They started out turning red and hot. She was soaking them in ice for too long so we finally got her to stop doing that a few years ago. Now she elevates them constantly and uses a fan. She will not wear anything but sandals and has had infections from sores on her feet. When she sits with them elevated they color is more of a red. But when she stands or sits with her feet on the ground they turn dark purple almost black. And now they look like they are dying. They look terrible. She as been to several specialist but none of them know anything about EM and she has had multiple blood test and circulation test. All of her test come back normal. My main concern is that they never do a circulation test when she is standing or sitting. She is always laying down and that is when they look more normal. I think she is on an anxiety med that made them better at first but not anymore. And she takes pain meds to be able to stand the pain. Any suggestions? Do you feet turn purple?
It’s possible after years of being sedentary on account of disability that your mom has developed chronic venous insufficiency upon standing.
Is she able to do any exercise?
When muscles in the legs contract, the leg muscles help push deoxygenated blood back upwards against gravity towards the heart. Being able to walk, ride a stationary bicycle, or jog for 30 minutes several times a week will improve circulation and tone muscles in the legs. This will help prevent blood from pooling in the feet upon standing.
EDIT: I just noticed your profile says your mom is on blood pressure medication. Venous insufficiency can be caused by high blood pressure inside the leg veins.
From the Northern Illinois Vein Clinic:
The most common cause of CVI is high blood pressure, which can damage blood vessels, especially in the legs. The constant high pressure against the valves makes them weak and unable to effectively transport blood back to the heart.
The veins throughout the body have one-way valves that help blood flow to the heart, where it’s pumped to the lungs for oxygen and then back to the rest of the body. In chronic venous insufficiency, vein walls weaken and valves are damaged, causing blood to pool in the legs.
The condition can occur as a result of a lack of exercise or prolonged sitting or standing. Other causes include a blood clot in a deep vein of the legs, called deep vein thrombosis; or inflammation of the veins, called phlebitis. These conditions can block valves or weaken veins.
Certain risk factors increase the likelihood of developing chronic venous insufficiency. These include obesity and pregnancy, both of which can restrict blood flow in the legs.
People who have a sedentary lifestyle, smoke, and sit for prolonged periods, which can reduce blood flow in the legs, are at risk. The condition is more common in women age 50 and older.
Symptoms of chronic venous insufficiency include swelling, aching, and cramping in one or both legs. People with this condition may have reddish or brown areas on the skin, scaly or leathery skin, and varicose veins.
Left untreated, the condition can lead to disabling pain and open sores or leg ulcers, especially around the inside of the ankles.
Thank you so much for sending me this. I have been trying to explain this to her but I have not been able to put it in words that make sense to her. I will forward this to her to read. This is great information.
When her feet are purple color, is it in-between flares? My feet when sitting can turn purple and are in their “cold” state. Especially if I don’t try to climate control them ( no socks)
I never soaked my feet to cool them, however I would always try to keep my feet cold by not wearing socks even when I should’ve.
I learned I needed to listen to my body. Feet are cold, wear socks.
She used to cool them with ice baths until we were able to convince her to stop doing that. It was causing skin damage. She said they feel better when they are purple. That is when they are not hot. She uses a fan to cool them now. She only wears flip flops. Otherwise they get too hot.
If she in on a class of medications called beta blockers for her high blood pressure, they can certainly cause reduced blood flow (and help the EM).Check that medication class specifically - as it can cause ulcers if blood flow is severely reduced
my feet have been purple, and every shade of intensity of blue.
I have come to call this my blue phase, and I have found it to be the least painful, though 17 years ago i developed sores on most of my toes while they were blue and was treated with a compounded topical.
I have not suffered that particular agony since.
It is the red phase that is unbearable.
I am now being treated with gabapentin, a drug that can have “unkind” side effects, mostly confusion and dulling of the mind - for me. I’d been on it before for severe pain in my back, and had to go off because I literally didn’t know what I was doing.
I have much more to say about this - another time.
I decided to give it a try again, at a much lower dose. It is definitely helping my feet!!! I actually asked myself if I preferred “painless or brainless” and realized that the pain was making it hard to function anyway.
Im also awaiting insurance approval for botox injections in my feet, has anyone had experience with this?
and input purple feet, I’m sure you will find this is common in some of us with EM.