# Pictures or my EM **URL:** \ **Category:** General\ **Created:** [May 31, 2019, 6:00pm UTC](https://forum.livingwitherythromelalgia.org/t/pictures-or-my-em/3992 "2019-05-31T18:00:08Z")\ **Posts on this page:** 14\ **Page:** 1
**Author:** ![graceee06](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/graceee06/32/2416_2.png) [@graceee06](https://forum.livingwitherythromelalgia.org/u/graceee06)\ **Post date:** [May 31, 2019, 6:00pm UTC](https://forum.livingwitherythromelalgia.org/t/pictures-or-my-em/3992/1 "2019-05-31T18:00:08Z")
Does anyone else get rashes like these? They are hot to the touch and go away after sitting down. Triggered by walking in heat, alcohol, standing. ![image](https://canada1.discourse-cdn.com/flex027/uploads/ben_erythromelalgia/original/2X/d/d6b465404e4fbe8b70422313d5cb26529013522a.jpeg) ![image](https://canada1.discourse-cdn.com/flex027/uploads/ben_erythromelalgia/original/2X/c/ca9fcc818dd640b6955240d78f11526707b4f413.jpeg) ![image](https://canada1.discourse-cdn.com/flex027/uploads/ben_erythromelalgia/original/2X/0/019d28718b00dab90b046a1212dfacdc866a6663.jpeg) ---
**Author:** ![CarterDK](https://avatars.discourse-cdn.com/v4/letter/c/0ea827/32.png) [@CarterDK](https://forum.livingwitherythromelalgia.org/u/CarterDK)\ **Post date:** [May 31, 2019, 6:55pm UTC](https://forum.livingwitherythromelalgia.org/t/pictures-or-my-em/3992/2 "2019-05-31T18:55:39Z")
Yeah, i’d say that’s similar to what I can get. My symptoms have always started with that blotchy mottled pattern, filling in completely if left unchecked. The color of yours is slightly duller than what I get. Edit: Mine aren’t hot to touch anymore, but they used to be. 2nd Edit: Sitting down quickly eliminates the erythema now, but that used to not work. Elevating was also of limited benefit. The only thing that would stop the erythema fully was ice. Final Edit: I had the same triggers. I couldn’t even walk around the block. I would need ice strapped to my knees to walk any distance. But I was also in a perpetual flare pattern. It would happen when I was just laying on the couch watching TV too. It would happen every 2 to 3 hours. ---
**Author:** ![standing\_cat](https://avatars.discourse-cdn.com/v4/letter/s/e56c9b/32.png) [@standing\_cat](https://forum.livingwitherythromelalgia.org/u/standing_cat)\ **Post date:** [May 31, 2019, 8:08pm UTC](https://forum.livingwitherythromelalgia.org/t/pictures-or-my-em/3992/3 "2019-05-31T20:08:02Z")
Yes i do. The mottling precedes the flare for me, before it gets all red as carterdk noted as well. I flare with anxiety, heat, afternoon, night (latter 2 being what I call “time of day” flares). I have pics like your 3rd one even though my legs themselves are ok / do not fully flare. Because of the mottling I think many derms thought mastocytosis, although testing was negative and a trial of high dose antihistamines had no effect. Anecdote - one of my thoughtful derms, was rambling about this I think, and kept using the world “mottled” but I thought he was saying “model” at the time. So I thought I was hearing phrases like “you have model skin” although I knew that couldn’t be right! It wasn’t until the drive home where I figured it out 🙂 ---
**Author:** ![graceee06](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/graceee06/32/2416_2.png) [@graceee06](https://forum.livingwitherythromelalgia.org/u/graceee06)\ **Post date:** [May 31, 2019, 8:27pm UTC](https://forum.livingwitherythromelalgia.org/t/pictures-or-my-em/3992/4 "2019-05-31T20:27:33Z")
Hi standing\_cat, Have you been diagnosed? I have not. My dermatologist thought it looked liked hives and gave me Zyrtec which hasn’t helped. Rashes have been getting worse and it’s not even summer yet 😕. Have you found any improvement with your em? ---
**Author:** ![graceee06](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/graceee06/32/2416_2.png) [@graceee06](https://forum.livingwitherythromelalgia.org/u/graceee06)\ **Post date:** [May 31, 2019, 8:36pm UTC](https://forum.livingwitherythromelalgia.org/t/pictures-or-my-em/3992/5 "2019-05-31T20:36:20Z")
Do you also get rashes on lower legs up to knees? I sometimes get mine on my upper legs too. Also hands and feet. It seems now like even when I’m sitting outside I start to flare. It’s awful and embarrassing. I don’t want to take any medicine but really wanting this to go away ---
**Author:** ![standing\_cat](https://avatars.discourse-cdn.com/v4/letter/s/e56c9b/32.png) [@standing\_cat](https://forum.livingwitherythromelalgia.org/u/standing_cat)\ **Post date:** [May 31, 2019, 8:45pm UTC](https://forum.livingwitherythromelalgia.org/t/pictures-or-my-em/3992/6 "2019-05-31T20:45:00Z")
Yes, diagnosed, but it took a while. My sense is that the antihistamines etc is a common road for many EM folk in the beginning. Though sometimes they do work. Zyrtec was the first thing I’ve tried - I only found it temporarily helpful. My derm told me to then take gastrocrom, 2x allegra, 2x zyrtec and it had no effect which prompted us to move in another direction … vascular medicines. I think I’ve tried every vascular medicine available lol and nothing was significantly helpful - at that point I got a derm who was confident it was neurogenic (“that’s why the vascular meds aren’t helping”). I found a neurologist who did autonomic testing including punch biopsy and I was positive for SFN. If you haven’t done this yet, i think it might be helpful. I’ve found improvement over 3 yrs but only with medication. Unfortunately what works for one may not work for another. I am still trialling medication though hoping to get more improvement. My insurance just approved + I just scheduled every-other-wk outpatient lidocaine iv’s, which I’m excited about + hoping improvements build up. (I had lidocaine iv’s before but never in a series) Take care. PS - My face/ears are the worst; my SFN biopsies actually showed “non length dependent SFN”. ---
**Author:** ![CarterDK](https://avatars.discourse-cdn.com/v4/letter/c/0ea827/32.png) [@CarterDK](https://forum.livingwitherythromelalgia.org/u/CarterDK)\ **Post date:** [June 1, 2019, 12:38am UTC](https://forum.livingwitherythromelalgia.org/t/pictures-or-my-em/3992/7 "2019-06-01T00:38:25Z")
> [@graceee06](#): > > I don’t want to take any medecine but really wanting this to go away Those desires may prove to be mutually exclusive. A disease such as erythromelalgia is not a pathogen your immune system can fight off. There is scant chance of it going away without pharmacological intervention, particularly when its etiology is unknown. ---
**Author:** ![standing\_cat](https://avatars.discourse-cdn.com/v4/letter/s/e56c9b/32.png) [@standing\_cat](https://forum.livingwitherythromelalgia.org/u/standing_cat)\ **Post date:** [June 1, 2019, 2:54am UTC](https://forum.livingwitherythromelalgia.org/t/pictures-or-my-em/3992/8 "2019-06-01T02:54:22Z")
> [@graceee06](#): > > It’s awful and embarrassing. I’d be lying if I said I were never self-conscious about how this presents to others (esp. since my face/ears have looked disfiguring in the past, and sometimes still can … and who knows, might get that way or worse at some point in the future). But, I think this might be an opportunity to really chew on that statement, and a chance for self-reflection - what if it didn’t embarrass you at all, but rather made you more confident and bad\*ss? EM is many things, but embarrassing does not need to be one of them. unrelated - the only non-medical treatment options I can think of are: Bob’s protocol, CBD and/or THC, chronic pain therapy/groups, aspirin, antihistamines. I think birth control can potentially help some women, though I’m not sure if that falls into the “taking medicine” category or not! edit - Have you seen Dr. Jay Cohen’s medication / supplement guide? It talks about feverfew, butterbur, magnesium, alpha lipoic acid as possibly being helpful (though anything can possibly be hurtful as well) txt in here - > [@Dr. Jay Cohen - EM Resource](https://forum.livingwitherythromelalgia.org/t/dr-jay-cohen-em-resource/1253/8): > > SUPPLEMENTS AND HERBS IN THE TREATMENT OF ERYTHROMELALGIA Erythromelalgia (EM) is a disorder of the neurovascular system, that is, of the mechanisms controlling the activity of nerves and blood vessels. These neurovascular abnormalities typically affect the skin in the feet and legs, sometimes the hands and arms, and occasionally the ears, nose or other areas. EM has many similarities to migraine disorder, and both disorders can be reactive to a wide range of substances. In migraine, such subs… ---
**Author:** ![Kami](https://avatars.discourse-cdn.com/v4/letter/k/cab0a1/32.png) [@Kami](https://forum.livingwitherythromelalgia.org/u/Kami)\ **Post date:** [June 1, 2019, 6:11pm UTC](https://forum.livingwitherythromelalgia.org/t/pictures-or-my-em/3992/9 "2019-06-01T18:11:59Z")
What about acupuncture? ---
**Author:** ![CarterDK](https://avatars.discourse-cdn.com/v4/letter/c/0ea827/32.png) [@CarterDK](https://forum.livingwitherythromelalgia.org/u/CarterDK)\ **Post date:** [June 2, 2019, 12:32am UTC](https://forum.livingwitherythromelalgia.org/t/pictures-or-my-em/3992/10 "2019-06-02T00:32:21Z")
The majority of research suggests that acupuncture’s effects are [mainly due to placebo](https://onlinelibrary.wiley.com/doi/full/10.1111/j.1365-2796.2005.01584.x). If you believe it will work, you might find it modestly beneficial. ---
**Author:** ![Monkey](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/monkey/32/626_2.png) [@Monkey](https://forum.livingwitherythromelalgia.org/u/Monkey)\ **Post date:** [June 7, 2019, 2:11am UTC](https://forum.livingwitherythromelalgia.org/t/pictures-or-my-em/3992/11 "2019-06-07T02:11:46Z")
So similar. The spots on my legs came much much later than my initial onset of EM and they’re permanent. I now get eczema on my legs, mostly below the knee, but that comes on out of nowhere like a couple times a year. My feet are now, after 20 years of Raynaud’s and around 15 of EM, just permanently colored: red to purple, and really puffy, especially my toes. ---
**Author:** ![Monkey](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/monkey/32/626_2.png) [@Monkey](https://forum.livingwitherythromelalgia.org/u/Monkey)\ **Post date:** [June 7, 2019, 2:16am UTC](https://forum.livingwitherythromelalgia.org/t/pictures-or-my-em/3992/12 "2019-06-07T02:16:40Z")
I’m so the same as you. I’m still stunned that others are experiencing this body craziness with such precise similarities. ---
**Author:** ![Monkey](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/monkey/32/626_2.png) [@Monkey](https://forum.livingwitherythromelalgia.org/u/Monkey)\ **Post date:** [June 7, 2019, 2:17am UTC](https://forum.livingwitherythromelalgia.org/t/pictures-or-my-em/3992/13 "2019-06-07T02:17:33Z")
Nice for relaxing; did absolutely zero for symptoms. ---
**Author:** ![Jyandav](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/jyandav/32/2414_2.png) [@Jyandav](https://forum.livingwitherythromelalgia.org/u/Jyandav)\ **Post date:** [June 12, 2019, 2:59pm UTC](https://forum.livingwitherythromelalgia.org/t/pictures-or-my-em/3992/14 "2019-06-12T14:59:11Z")
My feet look exactly like yours when I flare! I do not get rashes like that. But mine get very itchy sometimes, specially on my feet. I think the worst symptom of mine is the painful swelling. And also the social anxiety has been absolutely awful.