Hello all, I’m so grateful to have found this forum. My 12 year old daughter has recently started complaining about hot hands and feet. She has had hot ears every so often for years. Her pediatrician and dermatologist has brushed it off as raynauds. But I suspect it’s not just that. Her hands and feet are always very cold. That’s been the norm. But now after they are cold they turn red and hot. Sometimes only parts of the fingers or feet are hot. The toes on the top of the foot have a brownish tinge to them and a line of demarcation where they meet the foot. I am trying my best understand how to distinguish the reynauds re-warm phase from EM. I tried cold water on the hot feet and she just said it was uncomfortable and made her feet numb. Any thoughts would be so appreciated. Thank you for your time.
Hi, sorry your daughter is going through this. I have mild Raynauds and Erythromelalgia symptoms. One piece of advice is to never put hot body parts in cold water, as this may cause nerve damage. I use hand held fans for face and ears, water sprayer when outside, and wrapped cold packs in towel or paper towel to cool down. Avoid prolonged direct sun exposure, loose coverings for skin or hat for ears. Elevate hands and feet when hot. Cool drinks, popsicles. Avoid too much caffeine and sugar, as they can trigger. Hot atmospheres, stress, being sick can trigger flares as well. Hope any if this can help!
Oh and from what ive read, the raynauds hotness usually comes after the coldness…blood starts circulating back again, which can cause heat, pain, tingling.
Raynaud’s is pretty classic for turning white, then blue and red with a clear demarcation line after cold. If its cold triggered, it sounds like Raynaud’s. Does exercise, heat, pressure induce the red (hyperemia) phase? Does having the hands or feet in a dependent (lowered position) trigger it? If not, then is much less likely to be EM per my own understanding. A visit with a pediatric rheumatologist could be helpful. That being said, there are neurovascular disorders and there can be spectrums.
Thank you for the reply and the tips.
Thanks for your reply. The feet and hands start out as freezing cold and then turn beet red and hot. But then I also see that walking a long time with shoes and socks brings on the redness. Hence my confusion re Raunauds v. EM. I know it can be both.
From someone who only has EM, my hands and feet are NEVER cold, ever. Dead of winter in flip flops (in Michigan), in ice water. etc., never cold, so definitely some Raynauds going on.
I have every symptom you describe and I have a definitive diagnosis of EM with some Reynauds, which my doctor says is a fairly common combination. My flares are triggered by heat, friction, humidity, highly processes carbs, and having my feet below my heart for too long. Now I have the red/white line all the time, even if I do not feel the flare. (BTW, stopped night flares once I changed my diet and stopped eating at least 4 hours before I go to bed).
What has helped me: bucket of water at room temperature (or lukewarm) often can stop a flare. I think it might be as much about the pressure as the temp. Fans work.
The biggest thing is to find someone who actually treats this condition, and does so in kids.
Thank you, Jalika. May I ask if your ears and lips also get hot occasionally? Also, if its not too personal, do you lead a “normal” life and take these flares in stride or is it completely disabling?
I think you just have EM. If you had Raynaud’s your extremities would be cold then the attacks set in if your hands or feet get cold enough.
Good luck to you.
My EM started as a child in my ears. When I was around your daughters age it moved to my hands and feet. I first noticed it in my feet after walking and it then moved to my hands shortly after. I’m now 26 and its moved to my legs and arms as well. I also have raynauds. It seems a lot of people with EM do.
thank you so much, best wishes to you.
Thanks for your reply. Could you please tell me a bit about how it started for you and progressed?
It started when I was young, honestly too young to remember. But if anyone touched my ears or accidentally hit me in the ear, my ears would burn like crazy. When I was 10-12 my feet started burning, like I said I notice it most when walking or in bed at night. A couple years later my hands started. For years I dealt with it just by cold cloths and fans. It was only a few years ago I was officially diagnosed. I’ve tried most of the popular EM medications with no relief so far, but I am continuing to try different treatments. I have EM in my ears, hands, feet, legs and arms with probably 30 flare ups per day. However I am lucky enough to still be able to work full time and live a fairly normal life.
Thank you so much, Shealth.
Thank you. Best wishes.
Hi Shealth, I think I am more in the first category. There is a lot I can no longer do and I struggle with that emotionally. Walking any distance in weather above 50 degrees is a challenge and this has taken out hiking and walking, which were very important to me. Hand flares make it hard to clean the house in a single go or do some basic domestic tasks. Sometimes I can’t get through a class (I am a professor) on my feet. In the summer, I am stuck inside. But I’ve never been a big fan of summer and sometimes I have symptom free winters. Nothing has changed in terms of my job. I live in a suburb so I would have to drive everywhere anyway. I bike and kayak now instead of hike.
This disease is so variable - both in its presentation and its course.
My recommendation is to try to find a good therapist who can help your daughter cope with any changes that limit what she can do with her body. Also, I took a course called Mindfulness Based Stress Reduction (out of UMass but I know it is taught around the world) and it was very helpful in terms of struggling with both the emotional side of this and with pain management. Not sure if they have a special version for kids.
FYI, having cold extremities is itself not enough to be classified as Raynaud’s phenomenon. The tissue has to blanch, meaning turn completely white. When blood flow returns to Raynaud’s affected tissue there is reactive hyperemia presenting as warm, erythematous skin. However, the initial blanching is the defining characteristic of Raynaud’s.
Erythromelalgia causes similar symptoms with a few notable differences. The underlying pathology of EM also involves intermittent blocking of blood vessels, so affected tissue can be cold. The primary difference is the skin does not blanch. Additionally, the erythema seen with with EM is reactive to cold temperatures and elevation, meaning it should lessen upon application of a cold compress or when affected extremities are elevated above the level of the heart. Erythema from EM may not always be preceded by palpably cold tissue.
Thank you for this detailed explanation. Let me ask a question if I may: feet that get very cold, then sweaty, then hot - how does one distinguish Raynaud’s Rubor (re-warming) from EM in that case? Wouldn’t elevation of the legs cause blood to drain in both Raynauds and EM, its a function of gravity after all.
The erythema is reactive hyperemia from Raynaud’s if the skin blanches first. Below is a picture of tissue blanching from Raynaud’s. If the extremity is just cold without blanching, it’s not Raynaud’s. Tissue affected by Raynaud’s typically turns cyanotic (blue) after blanching. 