Hi,During the day my feet are freezing cold lately while my upper legs (knees and thighs) are swollen and burning hot, but when I wake up they are red an burning. It looks like they warm up while I’m sleeping but they turn cold again fast. I didn’t try to warm them up because when they are cold at least they are not burning and painful. I didn’t use any cold or hot water, ice or cooling product on them. I put some EMLA cream on my thighs and knees. I received 35 mg of IV lidocaine on Friday, I can’t see any improvement.,(6 low dose IV’s so far), my EM is even worse.
When I had taken a look at my soles of my feet I was shocked. The skin on the soles of my feet looks permanently changed, with brown patches, raised skin and small wounds. I’m afraid that I’m developing skin ulcer, sore or necrosis due to lack of oxygen. What can I do to prevent further damage? Please give my some tips, I’m scarred to death. I saw dermatologist on Tusday she said she had only 5 minutes and didn’t want to look at my photos of my flares on my phone. I didn’t flare at the time, she said she didn’t see any skin changes even my upper legs were swollen. She didn’t want to take a look at EM articles and documentation I brought with me. Please help me, I’ m devastated.
@CarterDK, are you sure? In reality it looks worse with small red cracks,and raised brown skin and it stays the same if the feet are cold or hot. It’s painful when I’m walking. Beside that I’m MRSA positive. I’ve had dark red or pale feet without any permanent skin changes before. I would like to prevent it from progressing further (to become an ulcer) I treated my father’s decubitus (necrosis) and I know how difficult to treat an ulcer or necrosis after it’s full- blown is. My feet’s temperature is never normal (extremly hot or freezing cold) Can you recommend some topical treatment or something? I would be very grateful!
@CarterDK, this photo was taken yesterday. The pictures I showed her on my phone are very different with very red and swollen skin. I showed the same pictures to 3 specialists who were much more experienced like this young lady (rheumatologist, anesthesiologist, EMG dr) they are all around 60 years old) and they all told they had never seen anything like this before. Once the photo is uploaded on computer the colors are not the same (paler) I don’t know if my old phone or old computer is to blame. But I can send you some other photos if you like. Maybe I didn’t express myself with right words as English is not my first language. I don’t think it is ulcer now, but I 'm afraid to become one if I wouldn’t do anything to protect my skin. I apologise if I upset you. You don’t know how difficult is to live in a country where the health care system is collapsing, and you have nowhere to turn to. I found no single case or article of EM in slovenian language on google.
I deeply apologise but I’m very stressed out, I don’t get anywhere I can lose my job because EM is so unrecognisable in Slovenia.
Here’s the problem. Most dermatologists are already unfamiliar with erythromelalgia. So, if you go into your appointment saying you also think you have x, y, or z — and the doctor easily determines you don’t have x, y, or z — then the doctor isn’t going to take you seriously on your concerns about erythromelalgia since it’s even less common than x, y, or z. They’re going to think you’re just wasting their time.
Conditions such as skin ulcers, sores, or necrosis are not uncommon. A dermatologist is going to know what those look like. So, if the dermatologist says that’s not what you have, it’s not what you have. Likewise, if the dermatologist says you don’t have swelling, you don’t have swelling. You have to accept their professional opinion. They know more about it than you do.
The only time to challenge a doctor is when you’re certain they’re wrong, you’re right, and can prove it.
@CarterDK First of all she was not even a dermatologist - intern without supervision. (she was replacing a well known dermatologist) I would have cancelled an appointment but I hadn’t been informed before. Second, she was around 25, she said she had 5 minutes and didn’t even want to listen. I didn’t show her my feet because I didn’t know I have changes at the time. I just wanted to show here some really graphic photos of Em flares, she was not interested, she didn’t even do a stemmer sign. I didn’t mention any ulcers and yes my legs are more puffy than swollen. I know my body, others noticed also (mum, sister) my trousers don’t fit the circumference of upper legs varies for 4 cm. It’s an non pitting edema I believe. It is true I’m very skinny though.
To reduce infection risk for cold water baths you can add Epson salts to the water or a teaspoon or two of hydrogen peroxide. That should reduce skin infection risks from having you’re feet inside the water for longer periods of time.
This advice was given to us by both doctors and neurologists.