I've had erythromelalgia for 5 years now, but in the last year my heels have become so painful I cannot even go for a ride in the car as the vibration makes them swell and turn black and they will be extra painful for weeks. They seem to have developed calluses (the whole heel), or hardened outer layer, with a cavity underneath. I can barely have my feet down and need to keep them elevated all day and I cannot put any pressure whatsoever on my feet. Does anyone have any idea how to get the swelling down in my heels? or what could be causing them to be so sensitive? I have flares every evening until morning and the pain in my heels is unbearable, it feels like a million burning cuts being doused with alcohol- and if I move my feet while they are flaring the pain becomes even worse- I am just wondering if anyone else experiences this? Does anyone know what is happening? Thank you :)
I have had long periods lasting several months at a time with terribly painful heels. My pain is along the back side going up to the calf. I don't have the swelling however unless I am in a flare. When I started having EM and didn't know what it was or how to minimize it I had flares pretty much 24/7 and I developed dark purple almost black feet and I had sores all over them. Now that I know what to do to minimize my flares I have a lot more time flare free and after my flare ends my hands, feet , face pretty much go back to normal.
My normal life now is staying in a 58-60 degree house while keeping my feet elevated and limiting my activity to short 5 to 10 minute increments followed by rest and elevation. This keeps quite a bit of the flambeing down. I still get flares regardless in the evening and if I have to go outside for appointments and such. Since living like this I don't get the purple , black ,swelling and painful sores all over.
As of late I have done some things pushing myself to hard with activity around my house. Even with my home cooled this extra activity has caused a great deal more flares. Although still not 24/7 it increased in frequency enough to start causing the black constant swelling and sores. I though that wouldn't happen unless I flared 24/7 but unfortunately I was wrong and even moderate amounts of flares have this lasting effect.
I don't know if there is more you can do to lessen the frequency of flares such as keeping house colder, using chili pads or chillows on your feet. Fans directed on them help quite a bit too. In the evening it is more difficult and my A C can't make it cold enough so I put fans in my window once it is colder outside than in and I have one facing out to pull the heat out while the other one closer to me is faced in blowing the cooler air at me. If it is possible to do more to limit the flares this might help although I know some people even doing all of the above can't escape it.
If your heels are turning black and there seems to be a cavity below the callousing on your heel, I think this is an issue for your doctor to evaluate right away. What does your doctor say?
Sometimes when we elevate our feet a lot to reduce swelling, sore heels become a serious problem. The pressure on the heel causes the circulation to be cut off and there is puddling of fluid into the heel because of gravity. I try to reduce that by elevating my feet on very soft pillows. Sometimes if they are really sensitive, I elevate my leg up to my heel, but leave my heel free. This allows me to do some daily exercise -- rotating my feet at the ankle and pushing my toes forward and back, etc. all of which is necessary to keep up muscle tone and improve circulation.
I hope you ad your doctor can sort this one out so you can get some relief.
I am so sorry to her about your painful heels. I, too, have very sore heels but not as severe as yours. Mine hurt so much with sandals and they begin when I am driving. I guess we will never understand the damage this disease can cause. I only wish there was a way to relieve the pain.
Do you have cracks on the bottoms of your feet? If so, pain coming from those fissures can cause your entire heel to be painful. Scrub them with soap and water twice a day; apply an antibiotic and bandaid over each crack until the pain ceases. Then, after still cleaning them twice a day, apply Gormel Creme ( available via the internet ) to them. After they completely heal, apply the Creme once a day.
Hopefully, the above procedure will alleviate some or all of your pain.