Have u seen the photos i uploaded over?
All drugs and treatments for EM come with side effects (eg sedation, chest discomfortâŚ), and honestly if I didnât have any pain I wouldnât think any EM treatment would be worth it at all. Maybe cymbalta.
I have it bad in my face / ears, and Iâve grilled my UCSF / Stanford doctors many a time as to whatâs the difference between what I have versus something like rosacea or Raynaudâs. I donât understand the details but my sense is rosacea / Raynaudâs is purely a spasming of the blood vessels. But in EM - the pain circuitry / nerve aspect of it is running the show. Rosacea, raynaudâs, and similar vascular conditions are extremely common and I donât think thereâs any reason to think they would evolve into a pain condition, if thatâs what this is about.
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Yes, I saw your photos.
Unless there is pain to go with the redness and vascularity, neither are particularly remarkable.
For comparison purposes, I have greater vascularity in my foot/ankle than you do. Iâm unconcerned by it because my foot has always looked that way. Having vascularity in your foot doesnât 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.
How are ur toes? Do they get very red when hot? And do u have pain?
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.
I see i see, so how do u do it when ur on the beach, or when the temperature is high?
I donât think about it unless there is discomfort.
But doesnt ur toes get very very red and hot? How du deal with that? Isnt it very uncomfortable?
The word uncomfortable is defined as âcausing or feeling slight pain or physical discomfort.â If your symptoms are causing you to feel uncomfortable, then your entire premise that you have âno painâ is incorrect.
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.
Hi Iâm new here and Iâm 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. Iâm very thankful itâs not worse, but reading some of these comments is making me second guess the diagnosis if itâs not outright pain? I donât 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 itâs 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 Raynaudâs as I also have the symptoms that go more with that.
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 youâre in the early stages however Iâm not a doctor and canât diagnose.
Do u get any treatments for this?
What symptoms did u have at ur first onset? Did u have any pain? Any swelling? Could u excerciese?
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?
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 didnât 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.
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?
I could only do workouts which didnât 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 Iâve 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.
So ur pain during exercise was because of ur ankel surgery and had nothing to do with ur EM?