I have been dealing with EM for over a year. I have seen numerous specialists in the attempt to get a diagnosis and EM was finally confirmed (based on reported symptoms and photos) earlier this month. It was really quite surprising how long it took to find a doctor who was willing to commit to the diagnosis.
I have a couple of items I'd like to share in the hope that they might help someone else. First, a vascular specialist did a thorough ultrasound work-up of my leg arteries and veins. My arteries were great but there was some venous reflux in my great saphenous veins (no varicose veins present). He was willing to try endovenous ablation of one of the veins to see if it would have an impact on the EM. I had the right GSV ablated with great hope that it would make a difference. Unfortunately, it had absolutely no impact, positive or negative, on the EM. Maybe this knowledge will spare someone else the trouble of going through the same experience.
The other tip I'd like to share is regarding footwear. I love to exercise and early on I had a difficult time continuing to wear my usual running shoes for workouts. If you are able to tolerate closed shoes, there is a brand called Altra which has been a lifesaver for me. They are very different from typical running shoes in that they are designed with a natural foot shape rather than a tapered toe. My feet swell significantly when I exercise, so these actually have enough room to accommodate my expanding feet.
The last item I have is actually a question for everyone. At least 4-5 years ago, back when I was blissfully oblivious about EM, I noticed that blood would pool in my feet when sitting or standing for a length of time. There were no sensations accompanying the pooling - just visibly purplish blue feet. Is this characteristic for everyone with EM? Was this a sign of what was to come? Or is there just a subset of people within the EM community who happen to have this issue?
Welcome! Yes, when I think back to pre-EM days, my kids used to comment on how my toes were purplish/blue. it must be an "EM" precursor thing. (At least for the two of us.) I never really thought of it until you asked the question. At the time I thought it meant that my circulation was bad. Curious to see how others respond to your question.
I have the purplish/bluish color to my feet too when standing in one place or sitting, but I never noticed this until after the EM symptoms started.
I also recently had a ultrasound done of my legs just to check for structural problems with veins. (I'd had vein work done a few years back), Nothing uncovered. Vein doctor even said my arteries/veins looked very healthy.
Good job on getting a diagnosis, it can be very tricky to get one and having a diagnosis is still better than not knowing what is going on!
I remember that shortly before I stopped being blissfully oblivious of EM, my feet started getting very bright red shade after having a hot shower, but didn't cause pain or discomfort so I didn't pay much attention to it. Then the EM appeared and I started thinking it was probably an early sign. The purple colour came a few months later, mostly when after I've sat down for a while.
I cannot wear enclosed shoes unless it is really cold (say around 0ºC) and still not for more than a few minutes. The exercise I can do is on a stationary bike and on the lowest setting for about 10 minutes max.
I did a venous Doppler but everything was fine. EM people can vary greatly in terms of symptoms and I'm not sure whether or not everyone gets purple feet. The most distinctive trait with us seems to be not be able to withstanding heat.
Yes, I get the bluish feet while sitting. It started at the same time the beginning of my em sx started. I thought it was due to circulation because if I move my feet or get up, it goes away. Lovely, right?
I hope someday we all have feet that feel good all the time and perhaps, just as icing on the cake, look good, too.
Have any of you noticed hypohidrosis (don't sweat much) or anhidrosis (don't sweat at all)?
Last month I had a thermoregulatory sweat test at Mayo Clinic, which was used to confirm my suspected EM. I did not sweat much at all, particularly my arms or legs. The neurologist told me to be careful not to get overheated.
I have hyperhidrosis mainly in palms and soles and but that's abnormal in the context of EM (and I had it before I got EM, although I think it has got worse). But the norm for sweat abnormalities in conjunction with EM seems to be hypohidrosis or anhidrosis, according to these studies, for example http://www.ncbi.nlm.nih.gov/pubmed/17178984
Just to throw my voice in, I am a negative on the purplish/blue feet. I never had that. Though my symptoms are primarily in my knees, I never had anything like that in any part of my body. I still wear regular shoes without much difficulty.
Hello, yes, I noticed that! I used to sweat heavily (even from strong emotions or when I enter warm room from some colder environment) before EM, but now it is a challenge to break a sweat for me - I need to exercise really hard to sweat. But I have focal sweating in my soles now (between flares, while walking or anxious)
