Hi! I have been experiencing mild symptoms for about a year, and I am really sure that I have EM. My symptoms are redness in toes, enlarged veins and very hot feet, but no pain or so. I can workout normally in the gym barfoot, because the floor is quite cold. But from this site, I learned that some people don’t have pain, but I’ve found little info on how the disease progresses.
So my question is, has anyone had symptoms like mine and then gotten worse over years? Or have your condition stayed the same for years? What should I expect?
My EM sounds very similar to yours. My hands are the most affected though, my feet more rarely.
Almost never have pain except when I go from cold to hot temperature very suddenly.
Had it for around 10 years and it is more or less the same. It hasn’t really got any worse in that time nor has it improved.
I’ve had EM in my toes for almost 3 years.
I am able to live a normal life and exercise during the morning or day without difficulty. My EM will flare in my toes and it first”hurt” but it feels hot and is uncomfortable. Enough that I sit and put my feet up.
I have stayed the same. My understanding is 1/3 get better, 1/3 get worse, and 1:3 stay the same.
Hi Leo. My EM (no pain) started approximately 10 years ago (officially diagnosed 4 years ago). I would not say it has gotten worse but it has changed slightly, most likely due to life changes and changes in how I deal with EM.
I have found great relief with Vasculera (Diosmiplex 630mg). It is considered a medical grade food here in the US. I take 1 tablet per day and it has reduced my symptoms by 80 - 90%.
Honestly, if you don’t have pain then I would just stop worrying about it so much. Harder said than done, I know. You never know if it will progress and if it does, then deal with it at that point but there is no point in worrying and stressing out about something that hasn’t happened yet. Even those that have pain with EM often find therapies that help them. If you are looking for a certain answer and reassurance from others, you will not get one. Everyone is different and EM can manifest from many problems which is what makes it hard to treat, but it is treatable. I agree wholeheartedly with Carter.
Mine started out as just pain in both feet. Last year is when I noticed the redness and burning that was confirmed by a dermatologist as EM. Not much relief from many different medications or topical creams. Thinking about possibly a nerve stimulator. To read that some are able to exercise is wonderful, not my situation, I can barely walk because the pain is so intense. Good luck to you.
I am not sure what you have heard but nearly all EM medications are aimed at reducing the episodes of redness whether it be immunosuppressants, sodium channel blockers, calcium channel blockers, serotonin agonists and antagonists, antihistamines, beta blockers, and anticonvulsants among many other things. There are few medications that are taken just to relieve pain, ex. opiods, topical ketamine based creams and some anticonvulsants under certain circumstances (for sensation reduction in patients without nerve damage). You also stated that it is just in your toes but now state that it is also in your ears and hands so that might answer your progression question. If you don’t have intense burning pain and your extremities are cold most of the time then you may have the reactive hyperemia variation which responds well to serotonin antagonists and calcium channel blockers (proceed with caution with CCB).
Like I have said previously and repeatedly now to this question, my best recommendation along with others and what Dr. Cohen said himself is to find a doctor who is either knowledgeable about EM or willing to learn and is willing to safely and trial and error medications. EM is treatable, just like other circulation disorders, it can just be caused by many different factors which make it hard to treat but if you slowly chip away at causes through testing and trialing medications, you will find something that helps.
So I should go to the doc and take it from there? And then try out different meds, and see what helps my EM? Because my flares are not at all like the others in here, which is categorized as painfull/burning etc, its more uncomfortable, but really really annoying at the summer, because I cant walk barefoot due to the redness and the swelling.
Today I noticed that my ears get red too, not painful, only red. This happens very rare tho, and I have to be in a cold room before the redness/hotness disappears. So that means that its progressing, but unlike you others, mine is just uncomfortable, not painful at all.
Where should I go from here? Should I visit a doc? I live in Norway, and this condition is quite rare, so I am unsure to who I should go to first.
And I am also curios if this statement is right? “most treatment is just for pain relieve, there isn’t much flare relief”? I found it on a EM group.
I answered all of these questions in my answer above. A lot of people don’t have extreme pain with EM. It is the redness and hot feeling that causes discomfort. It is probably likely that you have EM and that it is progressing but I am not a doctor so I can’t say for sure. I would go see one. My EM is not painful, just uncomfortable, but it is still EM and has been diagnosed and is now treated with near complete symptom relief.
Are you sure about this? After reading about this condition on Google and different EM-groups it looks like everyone more or less develops big pain. But for someone it can take years before the pain really kicks in.
Yes. The reason you are seeing this on forums is that the most severe cases are the ones where people turn to the internet and forums for help and advice. More mild cases are not as life disrupting, this is why you are seeing this.
But seriously, why ask the same questions over and over here for a year and then not believe people. A doctor, whether familiar or not with EM, understands the body much more than the average person and your primary should be able to point you in the right direction to get the care you need.