Hello, my name is Marek and I am from Slovakia. I still havent been diagnosed but I have all the symptoms to qualify:). I first noticed my red feet with big veins few weeks after I got DVT caused by skiing injury. I immediately went to see my vein doctor, who did not find anything. So I went to see another one who did not find anything wrong as well. My doctor sent me to rheumatologist. She did couple of tests, with diagnosis: You are perfectly healthy. I do not know how, but I ended up at neurology department for one week. Although again, they found nothing, they told me to see psychiatrist. I did not know about the EM back then and I tought this really could help and I even started taking medicine. But it led nowhere so I quit. On top of that I got pretty depressed that nobody seemed to understand what´s like to be in fire and angry because they thought I was crazy. I finally discoverd this web site and all started to make sense. Imagine that when in the US many doctors havent heard about the condition, in my country it is times ten. There aren´t many info about this condition in my language and my primary doctor does not speak english a bit so I cant show him what I have found. It is almost a year and I still havent met any physician who at least heard st. about the EM. So the future is very uncertain but god bless people who started this website.
Keep trying! I currently get the most help from my neurologist. He even studies articles in between my visits. Unfortunately, nothing has helped me much yet. A few things helped for a little, but they never last. I have learned to never get my hopes up!
I’m glad you found us! I noticed when you signed up (I was the admin that approved your membership request) that your story was somewhat similar to my own (onset after an athletic injury, same age bracket). Have your doctors considered Complex Regional Pain Syndrome at least? My physician did a differential diagnosis between CRPS and EM because CRPS has similar symptoms to EM and onsets after injury or surgery. It would appear EM can onset after injury or surgery though too.
Marek,
My story is very similar to yours as mine started after an injury and subsequent knee surgery and was also tested for a DVT multiple times when my symptoms came on. I saw about 15 doctors before I found one that was willing to stick with me and make sure that I found the right doctors and got the right care. My best advice to you would be to not be afraid to be your own advocate. It is your health, your life, and your happiness. You are a person and so is the doctor. You have a right to display information that you have learned that could lead to better care for you. I recommend to not give up, keep seeing doctors until you find one that can help you or maybe work through your primary care doctor for referrals so that you constantly have a doctor in the loop. Print out articles, papers, conversations on this forum (maybe translate them if your primary can’t read them) and bring them to the doctors. You will find a doctor willing to learn and help you, it may just make time. Life could always be worse, that is what I always tell myself.
Here is a wonderful cumulative review paper that would be a good first step to show your primary that covers just about every possible cause and treatment to try for EM.
Thanks, thank you for your support. I have found that there is a centrum for treating rare deseases in my homwtown. So hopefully I ll be able to make an appointment there. They have a list of about 150 deseases on their website that they treat, but you wont find erythromelalgia there:). Anyway, this website is really helpfull and it provides great mental support which is st. every EM patient need the most I think (besides cure).