# EM with no pain, possible? Just hot/redness **URL:** \ **Category:** General\ **Created:** [May 16, 2018, 3:10pm UTC](https://forum.livingwitherythromelalgia.org/t/em-with-no-pain-possible-just-hot-redness/3261 "2018-05-16T15:10:04Z")\ **Posts on this page:** 20\ **Page:** 2
**Author:** ![leosinho](https://avatars.discourse-cdn.com/v4/letter/l/85e7bf/32.png) [@leosinho](https://forum.livingwitherythromelalgia.org/u/leosinho)\ **Post date:** [June 11, 2018, 10:56pm UTC](https://forum.livingwitherythromelalgia.org/t/em-with-no-pain-possible-just-hot-redness/3261/21 "2018-06-11T22:56:43Z")
> [@CarterDK](#): > > don’t understand. If there is no discomfort, what is preventing you from walking? When people can’t walk, it’s because it hurts too much. You’re saying it does not hurt, but that you still can’t walk. > > This makes no sense. > > Are you saying you don’t _want_ to walk outside when it’s warm because of how your toes look? Because that’s different than you _can’t_ walk. Have u seen the photos i uploaded over? ---
**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 11, 2018, 11:16pm UTC](https://forum.livingwitherythromelalgia.org/t/em-with-no-pain-possible-just-hot-redness/3261/22 "2018-06-11T23:16:14Z")
All drugs and treatments for EM come with side effects (eg sedation, chest discomfort…), and honestly if I didn’t have any pain I wouldn’t think any EM treatment would be worth it at all. Maybe cymbalta. I have it bad in my face / ears, and I’ve grilled my UCSF / Stanford doctors many a time as to what’s the difference between what I have versus something like rosacea or Raynaud’s. I don’t understand the details but my sense is rosacea / Raynaud’s is purely a spasming of the blood vessels. But in EM - the pain circuitry / nerve aspect of it is running the show. Rosacea, raynaud’s, and similar vascular conditions are extremely common and I don’t think there’s any reason to think they would evolve into a pain condition, if that’s what this is about. ---
**Author:** ![CarterDK](https://avatars.discourse-cdn.com/v4/letter/c/0ea827/32.png) [@CarterDK](https://forum.livingwitherythromelalgia.org/u/CarterDK)\ **Post date:** [June 11, 2018, 11:18pm UTC](https://forum.livingwitherythromelalgia.org/t/em-with-no-pain-possible-just-hot-redness/3261/23 "2018-06-11T23:18:46Z")
> [@leosinho](#): > > Have u seen the photos i uploaded over? Yes, I saw your photos. Unless there is pain to go with the redness and vascularity, neither are particularly remarkable. ---
**Author:** ![CarterDK](https://avatars.discourse-cdn.com/v4/letter/c/0ea827/32.png) [@CarterDK](https://forum.livingwitherythromelalgia.org/u/CarterDK)\ **Post date:** [June 11, 2018, 11:42pm UTC](https://forum.livingwitherythromelalgia.org/t/em-with-no-pain-possible-just-hot-redness/3261/24 "2018-06-11T23:42:45Z")
> [@leosinho](#): > > with bulging veins at my foot For comparison purposes, I have greater vascularity in my foot/ankle than you do. I’m unconcerned by it because my foot has always looked that way. Having vascularity in your foot doesn’t mean you have erythromelalgia. People with low body fat simply tend to be vascular. When I was running 50 miles a week, you could see veins in my groin and abdomen. ![IMG_0605](https://canada1.discourse-cdn.com/flex027/uploads/ben_erythromelalgia/original/2X/7/706a2c4a382b1f569b65458af7847ec4fe2a8403.jpg) ---
**Author:** ![leosinho](https://avatars.discourse-cdn.com/v4/letter/l/85e7bf/32.png) [@leosinho](https://forum.livingwitherythromelalgia.org/u/leosinho)\ **Post date:** [June 12, 2018, 8:38am UTC](https://forum.livingwitherythromelalgia.org/t/em-with-no-pain-possible-just-hot-redness/3261/25 "2018-06-12T08:38:06Z")
> [@CarterDK](#): > > comparison purposes, I have greater vascularity in my foot/ankle than you do. I’m unconcerned by it because my foot has always looked that way. Having vascularity in your foot doesn’t mea How are ur toes? Do they get very red when hot? And do u have pain? ---
**Author:** ![CarterDK](https://avatars.discourse-cdn.com/v4/letter/c/0ea827/32.png) [@CarterDK](https://forum.livingwitherythromelalgia.org/u/CarterDK)\ **Post date:** [June 12, 2018, 9:40pm UTC](https://forum.livingwitherythromelalgia.org/t/em-with-no-pain-possible-just-hot-redness/3261/26 "2018-06-12T21:40:28Z")
My toes get read and warm when exposed to heat, but are only minimally uncomfortable, if at all. However, and this is a _huge_ caveat, I am treated for erythromelalgia that occurs at my **knees**. My feet were never the problem. I wear socks and sneakers without issue. Erythromelalgia flares that occur at my knees are very painful. ---
**Author:** ![leosinho](https://avatars.discourse-cdn.com/v4/letter/l/85e7bf/32.png) [@leosinho](https://forum.livingwitherythromelalgia.org/u/leosinho)\ **Post date:** [June 13, 2018, 9:19am UTC](https://forum.livingwitherythromelalgia.org/t/em-with-no-pain-possible-just-hot-redness/3261/27 "2018-06-13T09:19:50Z")
> [@CarterDK](#): > > My toes get read and warm when exposed to heat, but are only minimally uncomfortable, if at I see i see, so how do u do it when ur on the beach, or when the temperature is high? ---
**Author:** ![CarterDK](https://avatars.discourse-cdn.com/v4/letter/c/0ea827/32.png) [@CarterDK](https://forum.livingwitherythromelalgia.org/u/CarterDK)\ **Post date:** [June 13, 2018, 8:14pm UTC](https://forum.livingwitherythromelalgia.org/t/em-with-no-pain-possible-just-hot-redness/3261/28 "2018-06-13T20:14:17Z")
I don’t think about it unless there is discomfort. ---
**Author:** ![leosinho](https://avatars.discourse-cdn.com/v4/letter/l/85e7bf/32.png) [@leosinho](https://forum.livingwitherythromelalgia.org/u/leosinho)\ **Post date:** [June 14, 2018, 10:44am UTC](https://forum.livingwitherythromelalgia.org/t/em-with-no-pain-possible-just-hot-redness/3261/29 "2018-06-14T10:44:35Z")
> [@CarterDK](#): > > don’t think about it unless there is disco But doesnt ur toes get very very red and hot? How du deal with that? Isnt it very uncomfortable? ---
**Author:** ![CarterDK](https://avatars.discourse-cdn.com/v4/letter/c/0ea827/32.png) [@CarterDK](https://forum.livingwitherythromelalgia.org/u/CarterDK)\ **Post date:** [June 14, 2018, 9:16pm UTC](https://forum.livingwitherythromelalgia.org/t/em-with-no-pain-possible-just-hot-redness/3261/30 "2018-06-14T21:16:37Z")
> [@leosinho](#): > > Isnt it very uncomfortable? The word _uncomfortable_ is defined as “causing or feeling slight pain or physical discomfort.” If your symptoms are causing you to feel uncomfortable, then your entire premise that you have “no pain” is incorrect. Which is it? ---
**Author:** ![leosinho](https://avatars.discourse-cdn.com/v4/letter/l/85e7bf/32.png) [@leosinho](https://forum.livingwitherythromelalgia.org/u/leosinho)\ **Post date:** [June 14, 2018, 11:56pm UTC](https://forum.livingwitherythromelalgia.org/t/em-with-no-pain-possible-just-hot-redness/3261/31 "2018-06-14T23:56:20Z")
> [@CarterDK](#): > > Which is it? My toes gets VERY red when its very warm outside, and that for me is uncomfotable. What else then Erythromelalgia could it be? But the thing is that when i workout, the redness are much better. And no pain. But veins are popping out and toes gets very red during hot weather and showers. ---
**Author:** ![Simpy](https://avatars.discourse-cdn.com/v4/letter/s/bcef8e/32.png) [@Simpy](https://forum.livingwitherythromelalgia.org/u/Simpy)\ **Post date:** [June 17, 2018, 6:45pm UTC](https://forum.livingwitherythromelalgia.org/t/em-with-no-pain-possible-just-hot-redness/3261/32 "2018-06-17T18:45:18Z")
Hi I’m new here and I’m interested in this discussion because my symptoms seem to hover between what I consider actual pain and significant discomfort. A rheumatologist has diagnosed me with erythromelalgia affecting my feet, hands, and nose. Sometimes my knees are affected. My main symptom is bright redness with significant heat and swelling. I would consider the sensation always very uncomfortable but only my feet get somewhat painful. And even with them, the pain is more of a tingly, prickly sensation, not outright burning. I’m very thankful it’s not worse, but reading some of these comments is making me second guess the diagnosis if it’s not outright pain? I don’t know what else it could be and it has taken years for me to find a Dr who seemed to know what they were talking about and took my symptoms serious. The bright redness I have is significant in itself plus how uncomfortable it is when it’s so hot. I do differ from OP in that mine gets way worse with exercise, or even just walking. People always think my feet and nose are sunburned. Also to complicate matters further, my Dr and I think I also have Raynaud’s as I also have the symptoms that go more with that. ---
**Author:** ![Kats](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/kats/32/2612_2.png) [@Kats](https://forum.livingwitherythromelalgia.org/u/Kats)\ **Post date:** [June 17, 2018, 11:50pm UTC](https://forum.livingwitherythromelalgia.org/t/em-with-no-pain-possible-just-hot-redness/3261/33 "2018-06-17T23:50:29Z")
I remember at my first onset of symptoms when I would walk they would go away whereas they would stay just standing, now however walking, standing or even just having my legs down I flare. It may be you’re in the early stages however I’m not a doctor and can’t diagnose. ---
**Author:** ![leosinho](https://avatars.discourse-cdn.com/v4/letter/l/85e7bf/32.png) [@leosinho](https://forum.livingwitherythromelalgia.org/u/leosinho)\ **Post date:** [June 18, 2018, 10:10am UTC](https://forum.livingwitherythromelalgia.org/t/em-with-no-pain-possible-just-hot-redness/3261/34 "2018-06-18T10:10:44Z")
> [@Simpy](#): > > People always think my feet and nose are sunburned. Also to complicate matters further, my Dr and I think I also have Raynaud’s as I also have the symptoms that go more with that. Do u get any treatments for this? ---
**Author:** ![leosinho](https://avatars.discourse-cdn.com/v4/letter/l/85e7bf/32.png) [@leosinho](https://forum.livingwitherythromelalgia.org/u/leosinho)\ **Post date:** [June 18, 2018, 10:11am UTC](https://forum.livingwitherythromelalgia.org/t/em-with-no-pain-possible-just-hot-redness/3261/35 "2018-06-18T10:11:53Z")
> [@Kats](#): > > remember at my first onset of symptoms when I would walk they would go away whereas they would stay just standing, now however walking, standing or even just having my legs down I flare. It may be you’re in the early stages however I’m not a doctor and can’t diagnose. What symptoms did u have at ur first onset? Did u have any pain? Any swelling? Could u excerciese? ---
**Author:** ![leosinho](https://avatars.discourse-cdn.com/v4/letter/l/85e7bf/32.png) [@leosinho](https://forum.livingwitherythromelalgia.org/u/leosinho)\ **Post date:** [June 18, 2018, 10:42am UTC](https://forum.livingwitherythromelalgia.org/t/em-with-no-pain-possible-just-hot-redness/3261/36 "2018-06-18T10:42:38Z")
> [@hayley3](#): > > My neurologist said some people have insidious EM, which means it arrives slowly, and does not present acutely So ur saying that EM gets worse inn all of us as the time goes? Or is it possible to have a mild EM, with no pain or so? ---
**Author:** ![Kats](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/kats/32/2612_2.png) [@Kats](https://forum.livingwitherythromelalgia.org/u/Kats)\ **Post date:** [June 18, 2018, 10:46am UTC](https://forum.livingwitherythromelalgia.org/t/em-with-no-pain-possible-just-hot-redness/3261/37 "2018-06-18T10:46:53Z")
For me my pain started as a sort of unbearable itching that has gotten worse and turned to burning pain accompanying it. For me I was recovering from surgery and could only do very light exercise that didn’t include walking. I did not have swelling back then besides swelling in my feet from the surgeries, now I will get swelling in my toes. I also have severe muscle cramps in my legs and feet despite being on alternating muscle relaxers and am confined to a recliner, currently working on getting on disability and getting a wheelchair. ---
**Author:** ![leosinho](https://avatars.discourse-cdn.com/v4/letter/l/85e7bf/32.png) [@leosinho](https://forum.livingwitherythromelalgia.org/u/leosinho)\ **Post date:** [June 18, 2018, 10:58am UTC](https://forum.livingwitherythromelalgia.org/t/em-with-no-pain-possible-just-hot-redness/3261/38 "2018-06-18T10:58:26Z")
> [@Kats](#): > > For me my pain started as a sort of unbearable itching that has gotten worse and turned to burning pain accompanying it. For me I was recovering from surgery and could only do very light exercise that didn’t include walking. I did not have swelling back then besides swelling in my feet from the surgeries, now I will get swelling in my toes. I also have severe muscle cramps in my legs and feet despite being on alternating muscle relaxers and am confined to a recliner, currently working on I see I see. So at the first of ur symptoms u couldnt do any workouts? Or was this due to ur surgery? U didnt have any pain except itching and thats it? ---
**Author:** ![Kats](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/kats/32/2612_2.png) [@Kats](https://forum.livingwitherythromelalgia.org/u/Kats)\ **Post date:** [June 18, 2018, 11:08am UTC](https://forum.livingwitherythromelalgia.org/t/em-with-no-pain-possible-just-hot-redness/3261/39 "2018-06-18T11:08:31Z")
I could only do workouts which didn’t involve my feet, I had intensive ankle surgery twice as I had no ligaments and still to this day have to be careful with my ankles. The itching in a way was like mosquito bites all over my feet and legs, some will describe it as pain where others will not and the itching is very particular as I’ve rarely seen others have it and could be explained by another possibly unknown condition. Once I recovered enough from my ankle surgery to perhaps go on a run or exercise I could not due to the pain. ---
**Author:** ![leosinho](https://avatars.discourse-cdn.com/v4/letter/l/85e7bf/32.png) [@leosinho](https://forum.livingwitherythromelalgia.org/u/leosinho)\ **Post date:** [June 18, 2018, 11:58am UTC](https://forum.livingwitherythromelalgia.org/t/em-with-no-pain-possible-just-hot-redness/3261/40 "2018-06-18T11:58:36Z")
> [@Kats](#): > > Once I recovered enough from my ankle surgery to perhaps go on a run or exercise I could not due to the pain. So ur pain during exercise was because of ur ankel surgery and had nothing to do with ur EM? [Previous page](https://forum.livingwitherythromelalgia.org/t/em-with-no-pain-possible-just-hot-redness/3261.md?page=1) [Next page](https://forum.livingwitherythromelalgia.org/t/em-with-no-pain-possible-just-hot-redness/3261.md?page=3)