# Is this 100% EM, or could i be having something else? **URL:** \ **Category:** General\ **Created:** [June 25, 2018, 12:43pm UTC](https://forum.livingwitherythromelalgia.org/t/is-this-100-em-or-could-i-be-having-something-else/3370 "2018-06-25T12:43:07Z")\ **Posts on this page:** 12\ **Page:** 1
**Author:** ![leosinho](https://avatars.discourse-cdn.com/v4/letter/l/85e7bf/32.png) [@leosinho](https://forum.livingwitherythromelalgia.org/u/leosinho)\ **Post date:** [June 25, 2018, 12:43pm UTC](https://forum.livingwitherythromelalgia.org/t/is-this-100-em-or-could-i-be-having-something-else/3370/1 "2018-06-25T12:43:07Z")
Hey guys. I am a teenager, a guy. And since january i have had som very annoying symptoms. - Toes gets red every time I shower, NOT the feet, just the toes. And the toes are NOT hot, just red. The left foot is ok. - When i workout in a gym, my toes are quite normal, but still a bit red. - Every time i wakeup from the bed in the morning, my toes and veins gets popped out, and when I walk back to the bed it disaeppers. - I have NO pain, and the symptoms/toe goes away if the temperature is cold, or walking barefoot on a cold floor. - If the temperature is high(28-35), and i stand for a longer period(15-20 sec), my veins are popping out, while my toes on both feet turn very very red. It disaeppers within seconds when elevating the foot. - If the temperature is high, and i wear tight shoes/socks, and walk for a longer period, my toes gets very red, not the feet, just toes. NO pain. Thoughts? Is it EM? Or COULD it be something else, and what? ---
**Author:** ![jswilcox2](https://avatars.discourse-cdn.com/v4/letter/j/a8b319/32.png) [@jswilcox2](https://forum.livingwitherythromelalgia.org/u/jswilcox2)\ **Post date:** [June 28, 2018, 1:03am UTC](https://forum.livingwitherythromelalgia.org/t/is-this-100-em-or-could-i-be-having-something-else/3370/2 "2018-06-28T01:03:29Z")
They don’t have to be hot to be red and/or hurt. They don’t have to hurt if a mild case but if you can wear shoes and socks and they aren’t the least bit hot/warm I would question an EM diagnosis. I lived for 30 years with EM with no pain. My feet just got hot and uncomfortable. I didnt even know EM was a thing. My EM was nothing back then. I would kill for those days again. ---
**Author:** ![leosinho](https://avatars.discourse-cdn.com/v4/letter/l/85e7bf/32.png) [@leosinho](https://forum.livingwitherythromelalgia.org/u/leosinho)\ **Post date:** [June 28, 2018, 9:33am UTC](https://forum.livingwitherythromelalgia.org/t/is-this-100-em-or-could-i-be-having-something-else/3370/3 "2018-06-28T09:33:26Z")
> [@jswilcox2](#): > > EM diagnosis. I lived for 30 years with EM with no pain. My feet just got hot and uncomfortable. I didnt even know EM was a thing. My EM was nothing back then. I would kill for those days again. How is your feet now? Still no pain? ---
**Author:** ![jswilcox2](https://avatars.discourse-cdn.com/v4/letter/j/a8b319/32.png) [@jswilcox2](https://forum.livingwitherythromelalgia.org/u/jswilcox2)\ **Post date:** [June 28, 2018, 6:17pm UTC](https://forum.livingwitherythromelalgia.org/t/is-this-100-em-or-could-i-be-having-something-else/3370/4 "2018-06-28T18:17:05Z")
3 years ago the EM really kicked in. Horrible pain. I didn’t ever want to leave an air conditioned room with my feet up. Nights were bad. I dreaded even going to sleep, if I could even get to sleep before the pain kicked in too bad. It took over 2 years to get someone to diagnose me (had to drive 8 hours away to find a Dr. that would). Has taken almost another year of trial and error with drugs but it’s mostly tolerable now. I take Cymbalta, Lyrica (side effects suck) and CBD oil. The CBD oil really helped but when I tried to back off the Lyrica, it didn’t help as much so it really seems to need the combination of drugs. I’d like to also go on Mexilitine but can’t find a Dr. willing to prescribe it at the moment. If you do have EM at some point, there will be no doubt. One thing I know about EM, it doesn’t just go away. You could be in the stage I was for almost 30 years when I had no pain. By the way, mine is supposedly secondary but I think that’s just the Dr.'s automatic assumption since I have a Rheumatological condition. I’ve had symptoms since I was a young child, under 10 so it is possible it’s primary. ---
**Author:** ![leosinho](https://avatars.discourse-cdn.com/v4/letter/l/85e7bf/32.png) [@leosinho](https://forum.livingwitherythromelalgia.org/u/leosinho)\ **Post date:** [June 28, 2018, 7:01pm UTC](https://forum.livingwitherythromelalgia.org/t/is-this-100-em-or-could-i-be-having-something-else/3370/5 "2018-06-28T19:01:42Z")
> [@jswilcox2](#): > > If you do have EM at some point, there will be no doubt. One thing I know about EM, it doesn’t just go away. You could be in the stage I was for almost 30 years when I had no pain. By the way, mine is supposedly secondary but I think that’s just the Dr.'s automatic assumption since I have a Rheumatological condition. I’ve had symptoms since I was a young child, under 10 so it is possible it’s primary. So ur saying that everyone of us with EM will notice pain sooner or later? ---
**Author:** ![jswilcox2](https://avatars.discourse-cdn.com/v4/letter/j/a8b319/32.png) [@jswilcox2](https://forum.livingwitherythromelalgia.org/u/jswilcox2)\ **Post date:** [June 28, 2018, 7:17pm UTC](https://forum.livingwitherythromelalgia.org/t/is-this-100-em-or-could-i-be-having-something-else/3370/6 "2018-06-28T19:17:14Z")
Probably, but you can hope to be the exception. 🙂 ![](https://canada1.discourse-cdn.com/flex027/uploads/ben_erythromelalgia/original/2X/c/c59af6bc511f69a6a99625729a1d6081e51b62dc.png "leosinho") [leosinho](https://forum.livingwitherythromelalgia.org/u/leosinho) ``` June 28 ``` > ![](https://canada1.discourse-cdn.com/flex027/uploads/ben_erythromelalgia/original/2X/0/02b1b07aab1e8e0706ffba54b5ef947deab73a08.png) jswilcox2: > If you do have EM at some point, there will be no doubt. One thing I know about EM, it doesn’t just go away. You could be in the stage I was for almost 30 years when I had no pain. By the way, mine is supposedly secondary but I think that’s just the Dr.'s automatic assumption since I have a Rheumatological condition. I’ve had symptoms since I was a young child, under 10 so it is possible it’s primary. So ur saying that everyone of us with EM will notice pain sooner or later? ---
**Author:** ![jswilcox2](https://avatars.discourse-cdn.com/v4/letter/j/a8b319/32.png) [@jswilcox2](https://forum.livingwitherythromelalgia.org/u/jswilcox2)\ **Post date:** [June 28, 2018, 7:20pm UTC](https://forum.livingwitherythromelalgia.org/t/is-this-100-em-or-could-i-be-having-something-else/3370/7 "2018-06-28T19:20:37Z")
leosinho Do you have other issues than possibly EM? Back pain, stomach issues, etc.? ![](https://canada1.discourse-cdn.com/flex027/uploads/ben_erythromelalgia/original/2X/c/c59af6bc511f69a6a99625729a1d6081e51b62dc.png "leosinho") [leosinho](https://forum.livingwitherythromelalgia.org/u/leosinho) ``` June 28 ``` > ![](https://canada1.discourse-cdn.com/flex027/uploads/ben_erythromelalgia/original/2X/0/02b1b07aab1e8e0706ffba54b5ef947deab73a08.png) jswilcox2: > If you do have EM at some point, there will be no doubt. One thing I know about EM, it doesn’t just go away. You could be in the stage I was for almost 30 years when I had no pain. By the way, mine is supposedly secondary but I think that’s just the Dr.'s automatic assumption since I have a Rheumatological condition. I’ve had symptoms since I was a young child, under 10 so it is possible it’s primary. So ur saying that everyone of us with EM will notice pain sooner or later? ---
**Author:** ![leosinho](https://avatars.discourse-cdn.com/v4/letter/l/85e7bf/32.png) [@leosinho](https://forum.livingwitherythromelalgia.org/u/leosinho)\ **Post date:** [June 28, 2018, 7:58pm UTC](https://forum.livingwitherythromelalgia.org/t/is-this-100-em-or-could-i-be-having-something-else/3370/8 "2018-06-28T19:58:32Z")
> [@jswilcox2](#): > > Do you have other issues than possibly EM? Back pain, stomach issues, etc.? No. Just a bit hot, very red toes when hot outside, and when waking up in the morning, from sleeping position. But i am not sure i have EM, but what else could it be? Have no pain. ---
**Author:** ![leosinho](https://avatars.discourse-cdn.com/v4/letter/l/85e7bf/32.png) [@leosinho](https://forum.livingwitherythromelalgia.org/u/leosinho)\ **Post date:** [June 30, 2018, 9:11am UTC](https://forum.livingwitherythromelalgia.org/t/is-this-100-em-or-could-i-be-having-something-else/3370/9 "2018-06-30T09:11:09Z")
> [@leosinho](#): > > Thoughts? Is it EM? Or COULD it be something else, and what? Thoughts? What could I be having? ---
**Author:** ![leosinho](https://avatars.discourse-cdn.com/v4/letter/l/85e7bf/32.png) [@leosinho](https://forum.livingwitherythromelalgia.org/u/leosinho)\ **Post date:** [July 1, 2018, 12:14pm UTC](https://forum.livingwitherythromelalgia.org/t/is-this-100-em-or-could-i-be-having-something-else/3370/10 "2018-07-01T12:14:52Z")
> [@jswilcox2](#): > > They don’t have to be hot to be red and/or hurt. They don’t have to hurt if a mild case but if you can wear shoes and socks and they aren’t the least bit hot/warm I would question an EM diagnosis. I lived for 30 years with EM with no pain. My feet just got hot and uncomfortable. I didnt even know EM was a thing. My EM was nothing back then. I would kill for those days again. Hi again, just have one question. Did u have EM for 30 years with no pain? How is that possible? I thought the EM gets worse as the years go? ---
**Author:** ![jswilcox2](https://avatars.discourse-cdn.com/v4/letter/j/a8b319/32.png) [@jswilcox2](https://forum.livingwitherythromelalgia.org/u/jswilcox2)\ **Post date:** [July 4, 2018, 12:26pm UTC](https://forum.livingwitherythromelalgia.org/t/is-this-100-em-or-could-i-be-having-something-else/3370/11 "2018-07-04T12:26:30Z")
Yep. It was mild. I didn’t even know EM was a thing, just thought weird quirks, couldn’t really wear shoes without feet getting uncomfortable hot (no pain, just uncomfortable). Never sleep with covers on my feet, etc. But I never had pain until the last 3 years. It set off about the time I hit menopause, so that is what I blame the change on. So good news, you might get 30 years too, where it’s a mild case. ---
**Author:** ![leosinho](https://avatars.discourse-cdn.com/v4/letter/l/85e7bf/32.png) [@leosinho](https://forum.livingwitherythromelalgia.org/u/leosinho)\ **Post date:** [July 4, 2018, 11:02pm UTC](https://forum.livingwitherythromelalgia.org/t/is-this-100-em-or-could-i-be-having-something-else/3370/12 "2018-07-04T23:02:18Z")
> [@jswilcox2](#): > > Yep. It was mild. I didn’t even know EM was a thing, just thought weird quirks, couldn’t really wear shoes without feet getting uncomfortable hot (no pain, just uncomfortable). But when u had a mild case, did u take any medications or so? I think that i have a mild one myself, but its so annyoing with the redness. Other then that, i have absolutelly no pain.