How can you tell if it's EM or Chilblains

General
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Hi everyone, I have been doing some reading but am still confused about my symptoms. Wonder if anyone has a similar case and can help me figure out what I have while I wait for an appointment.

The palm of my hands and feet have always been redder than usual my whole life, and they are always cold even if the temperature it’s just a little bit low. When I stand for too long my feet and toes get red and I feel some tingling but nothing major.

I had 1 major flare in both of my feet 2 years ago (red, swollen, itchy, tender, painful, shiny toes) for a few weeks and then it went away. Just minor discomfort when I take hot showers for too long sometimes.

A couple weeks ago when I was giving my baby a bath, she kinda got herself into an uncomfortable position so I had to dip one foot in to fix her. My feet were cold then so when I dipped it in her hot bath water I knew I was gonna pay for it.

Since then a few toes started to get red, swollen and itchy but manageable. The other day we went out and I was wearing UGG type boots with no socks, my feet got really hot and started itching so bad in the cafe, I had to take them off to get some relief. After that things went downhill, I started to have itchy painful toes, they itch at night when I’m in bed under a comforter so I stick them out, but my body can’t get warm with my feet out and it’s dead winter here.

I got some baby aspirins and they help a little, I feel less pain and less discomfort. Tonight while I was cooking they started to hurt so bad and itch some. I had to stop, sit down, the top of the toes are soooo puffy and painful and hot to the touch, the rest of my feet is cold though.
I took 2 aspirins but no help this time. I started to massage the toe out and downwards trying to push the blood away from my toes, after a while they did get less swollen and painful, but if I stop it come back pretty fast.

I read some tips on here about filling the tub with cold water while showering so I just did that and it helped. the cold water kinda numbed my feet so they feel better now while I type this.

My trigger seems Chilblains but my relief seem like I have EM? And when I went to that coffee shop my feet were not cold, but then the warm furry boots made them hot and itch, isn’t that an EM trigger, heat? Does anyone know what’s going on?

I just moved to another state and still waiting for my insurance, hoping to find a rheumatologist or a specialist at Iowa City hospital. I looked on here but no recommendation for my area so far. Please help. Thank you and I wish everyone have a non-flare holiday…

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My EM started with just itching when I stood too long or my feet got too hot, and when I place them in hot water they turn red and itch and burn.

It started with itching at 14 and over time, especially from 17 on it progressed into itching burning pain whenever standing too long or if something is too hot, when I’m not flaring my feet are absolutely ice cold to the touch.

Also I know the cold water may have helped but I highly recommend stopping any cold water and ice packs, it can cause a flare after you stop that is so much worse than the first one, for me elevation helps a lot.

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I’m in southern Iowa and have EM. I’ve been to several doctors trying to find out what was the trouble with my hot feet. A dermatologist (the top one in that office) finally came up with EM and it was also on my list of possibilities. He referred me to Iowa City to see Dr. Swick. If you’re able to go there anyway I would start with him if at all possible.

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Yours sounds a lot like me and that’s what’s I’m afraid of - getting worse :frowning: I tried elevation when it was so bad last night but surprisingly it didn’t help. I massaged my toes downwards trying to move some blood away and it helped a little. At first it was so painful to do it because it was so tight and swollen, but once I got it going it didn’t hurt to massage.

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Thank you so much for the recommendation. I live close to Iowa city so I will definitely look him up. If I do get to see him I will keep you updated. :pray:

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Something that may help is compression socks! You can usually pick them up pretty cheap at walmart, it will help keep your blood circulating instead of in your toes, be warned though that it spreads the flare more up your legs instead. It also helps keep the temperature of my feet regulated. Often if I’ve had to walk or had my legs down I have to elevate for an hour or more to get relief, if you don’t have one I highly recommend investing in a lazy boy chair.

It took me years to get to the point I am and not everyone gets worse so try not to worry too much, I started with the itching at age 14 and around 18 and 19 was when it really started getting bad but I also have a lot of other conditions and a possible autoimmune disorder. I’ll be 20 on the 14th!

You can live a full life even if it gets worse, you just learn to do things differently and always ask for help when you need it! Heck this tuesday I rode a horse! I went out on black friday with the help of my wheelchair and every week I swim for an hour or two with a monofin!

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I’m sorry you had to experience it so young, but you seem strong and capable and are someone I should learn from. I will get the socks and test them out, it’s a very small investment for comfort. I think I would rather have it away from my toes because toes are too sensitive. Take care Kats, I wish you the best :heart:

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That would be great! I hope he helps. He wasn’t much more informed on EM than my dermatologist but at least he confirmed that I don’t have chilblains. My derm keeps saying I do but I know it isn’t. I’m on hydroxychloriquine (Plaquenil), which I THINK has helped. I went off it for a week to test it and the feet got worse… Could’ve just happened to be a bad day but I went back on it.

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EM causes a disordered physiological response to warm temperatures. If putting the affected skin in front of a heater elicits erythema, then you likely have erythromelalgia.

If you appear to be having erythema in response to cold temperatures, that would not be consistent with erythromelalgia unless the erythema occurs during the process of warming the affected tissue (e.g. when under a blanket, immersed in warm water, or in front of an external heat source, such as a heater or open flame).

Putting skin affected by erythromelalgia into ice water or against an ice pack will eliminate symptoms within minutes. If it doesn’t eliminate symptoms, you don’t have erythromelalgia.

EDIT: One more thing I forgot… with an EM flare the affected skin is blazing hot. It’s not just red, itchy, and painful. The skin will literally be radiating heat. When I had flares before I started mexiletine treatment, I could put my hand about a millimeter above the affected skin and feel the heat without even touching the area. It’s not just that the skin feels like it’s burning from a sensory perspective. The skin literally is burning.

Erythema (from the Greek erythros, meaning red) is redness of the skin or mucous membranes, caused by hyperemia (increased blood flow) in superficial capillaries. It occurs with any skin injury, infection, or inflammation.

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That’s unusual because people with erythromelalgia typically can’t wear socks at all. Compression socks are contraindicated for EM. They worsen, not improve, EM symptoms.

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I may also have pots syndrome which affects my EM, it doesn’t get rid of the flares just spreads them more out to my legs instead of my feet. As they only have symptoms in their toes and like me it happens when standing I thought it couldn’t hurt to suggest. I mostly wear the compression socks for muscle cramps though, it’s minimal help with the flares. Because my feet are so cold when not flaring I have to wear socks but often have to take them off as soon as a flare starts, it’s really hard to balance, it’s either ice cold or burning hot to the touch, no inbetween lol.

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Have you considered you may have POTS syndrome instead of EM?

Because the last thing I would ever expect to hear from something with erythromelalgia would be – “I need to warm up my EM affected areas. They get too cold.” On the contrary, people with EM typically have to be told to NOT submerge their feet continually into ice water. When my EM was untreated, I had 2 dozen ice packs and rotated them 24/7. I bought a freezer to keep next to my bed so I would have constant access to ice throughout the night. I wanted to keep myself on ice all the time.

So, what you’re saying just doesn’t fit what I would expect to hear from something with erythromelalgia. It’s completely wrong.

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Yes, though I have been to a rheumatologist who believes it could be both. My feet flare with any heat, and are relieved by both elevation and ice packs although I avoid the ice packs due to rebound making the flare worse. I cannot tolerate any exercise besides swimming as I end up flaring and cannot even have my feet down. If I’m up and about I cannot tolerate socks. I believe pots does trigger my EM though and if I can get it managed it may help my EM. The redness caused by blood pooling in pots is rarely if ever painful, when I flare I cannot even walk due to the immense pain. I have lots of conditions that may intertwine and overlap. I can provide pictures of my feet flaring if you would like to take a look and give me your opinion!

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Yeah, I would be interested in seeing pictures. The very notion that you’d want to warm the affected area up makes me question whether you could possibly have EM.

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[38 new photos · Album by Kats Sanders] Feet and leg problems

Here is my special album I show doctors of any issues I have happened to catch on camera of my feet, also documented is the healing process of a scratch and pictures of a toenail that had become incredibly thick. The pictures don’t quite do the color justice though but it’s the best I can get. They do this everytime they are around heat, when I stand or even when I have my legs in a dependent position. The redness is accompanied by throbbing burning pain itching and tingling.

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I hear this said a lot in EM circles. Have you ever tried a calcium channel blocker, low dose for a couple wks? It might help with the extreme reactivity- esp. if you sense that preventing cold could prevent the EM flares. It would likely get worse before it gets better though. I had a doc who said he thinks most cases of EM can be improved by treating the vasospasm, but ppl do need to commit to a 3 wk trial or so. i hope things improve for you, and you can feel more independent.

edit - i see you’ve tried vasodilators :slight_smile:

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Yeah I tried the vasodilator for a couple weeks and it made it significantly worse, I would flare within seconds after standing.

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Hi Carter, thank you for spending the time to explain to me. You are right, the skin doesn’t just feel burning, it is hot when I touch it, the rest of my feet would be freezing cold and my toe skin is super hot. Cold water/ cold surface give me immediate relief so it seems like I do have EM.
The thing that i’m concerned about is the trigger, it seems like have Chilblains flare first and then after that comes EM. I don’t know if that’s even possible.

So the past few days the pain and the itch subsidized a lot as long as keep my feet at a normal temp (not too hot but also not too cold because i’m worried about more chilblains flares). However last night i saw some sore red spots on the side of both my pinky toes, the skin feel raw and blister-like and itch a bit but it was bearable. After I went out for lunch today (the heater was on high where I went so I got hot), a couple of my toes and the sides of the pinky toes started itching like never before, so bad that I can’t think straight and wish I could cut them off.

I’m putting my feet in front of the fan now and it helps a little so I can sit and type, not going crazy, I don’t dare to use iced water. The skin on my toes are so sensitive, it feels like walking on popped blisters mixed with some arthritis pain. It seems to me that they were stretched too fast for too long from being swollen, they are damaged now.

Now I don’t know what I have anymore, my insurance won’t kick in until end of the month and I have super high deductible. I hope that after these flares they will go away for a couple years like the last time it happened. All I need to do is to keep my feet warm so I don’t get Chilblains and then won’t get EM. I only have problems being warm after the flare from going from cold to hot too fast, after that warmth or heat become a huge problem for me. Sorry for rambling…

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These are my feet last week when the flare started. The pictures don’t look as bad and red as they were because of lighting

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This is what they look like now, the toes are not swollen anymore, just red/purple, sore raw skin and new red dots on the side of pinky toes
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No need to apologize for rambling. I think you need a plan of action. Right now your health insurance is an obstacle. I assume you don’t have insurance now and are waiting for coverage to start January 1st? Have you considered getting a plan with a lower deductible or are they simply too unaffordable? It’s open enrollment for state and federal insurance exchanges until December 15, so you still have the next few days to change coverage. Purchasing a plan with a super high deductible only makes sense when you are generally healthy. Since you need immediate care for an urgent condition, you’re going to be immediately spending towards the deductible anyway. Therefore, a lower deductible may make more financial sense.

Once that is squared away, you’ll want to be evaluated for chilblains. It might make sense to be treated for that first to see if reducing the sensitivity to cold temperatures also eliminates the reactive sensitivity you’re experiencing to subsequent warm temperatures.

Those are the initial steps I would take. Good luck.