Hi we r now into winter here in nz and i'm noticing that i'm feeling the cold very much so that my feet go white then theycome back blue and pink then finally red. also i shiver and shake with the cold
I've got Raynaud's disease as well as EM, so I get the same problem, it sounds like you might have Raynaud's too. I get the Raynaud's mostly in my hands, rather than my feet, but you can go from a Raynaud's attack into an EM flare.
I hope that helps and you can avoid painful flares from this.
Paradoxically I find the Winter far worse to deal with than the Summer. I can never bear to wear warm clothes or more than a light sheet on my bed so I shake with cold all Winter long. At least in hot weather I can wear very little and though I feel as if my limbs are cooking it is easier than freezing and cooking at the same time. Does that make sense? Not much about EM makes sense to me!
I do notice with myself that once my feet and hands are cold, it takes almost 18-24 hours for them to warm back up and it literally will take 3 pair of socks to get them back to having "feeling". Along with that, that gets the rest of my body cold as well so I do notice the same thing as you do.
Nel, I have felt the same way as you. If this condition gets worse when our feet get over heated & can't cool down properly then why do I have it worse in the winter months? Very confusing for me. I know, I very rarely wear anything but flip flops & sandals all year round. I just put a small light sheet over me (but not my feet) and elevate my feet. I do better with the air cond rather than the heat which is needed in the winter. Also, my torso has to be warm but my limbs need to be cool in order for me to be comfortable & not trigger the EM. In the summer I can go outside mainly when I can stick my feet in the pool.
Hello Karenati, at last someone who understands the predicament. In winter I really suffer miserably with the cold but dare not wear a warm jumper or shoes and go to bed as you do with a light sheet and bare leg, aching with cold and unable to sleep But about 3.30 in the morning I find I can pull up a light blanket and sleep until the alarm clock wakes me at 6! It is gloriously warm at the moment in England and long may it last…
You sure are right that not much about EM makes sense! I think we all have to do what works for each of us to keep this under control. You just reminded me of when I went to Japan a few years ago. It was bitter cold but I still wouldn't wear enclosed shoes because I didn't want my feet to get too hot & have an EM flare.
The reason your EM is worse in winter could be that you have the vasoconstricting type. If you have that form, your flares are triggered by your blood vessels closing down too much, in response to cold, and then opening up far too wide when they warm up again. This type often occurs along with Raynaud's disease, which would explain why you feel the cold so much. The good news is that there are a couple of good treatments for this type of EM, which would also make you feel a bit warmer and be able to stay warm without triggering a flare.
karenatl said:
Nel, I have felt the same way as you. If this condition gets worse when our feet get over heated & can't cool down properly then why do I have it worse in the winter months? Very confusing for me. I know, I very rarely wear anything but flip flops & sandals all year round. I just put a small light sheet over me (but not my feet) and elevate my feet. I do better with the air cond rather than the heat which is needed in the winter. Also, my torso has to be warm but my limbs need to be cool in order for me to be comfortable & not trigger the EM. In the summer I can go outside mainly when I can stick my feet in the pool.
Hi. Yes, my feet get very cold and then either are very red/white with the colder months. It's been ok here recently because we've had weather in 70s and 80s, but a few weeks ago, we had a rainy, cold day in the 50s and my feet got cold again and red. It's strange since they tested me for Raynaud's and said I didn't have it, but it sure seems strange to me. I find that my feet and hands react to either extreme--very warm and very cold. Good luck to you.
I was wondering whether people with Raynauds found their symptoms worsened when they started with EM. I had Raynauds since my early twenties but since I have had EM I am having episodes even when at home in a warm enough house in early Summer (fingers mostly)and staying white then blue for longer than previously too.
Hi Starsmurf
I understand there are 3 types of EM. Is there any way to distinguish which type of EM you have?
starsmurf said:
The reason your EM is worse in winter could be that you have the vasoconstricting type. If you have that form, your flares are triggered by your blood vessels closing down too much, in response to cold, and then opening up far too wide when they warm up again. This type often occurs along with Raynaud's disease, which would explain why you feel the cold so much. The good news is that there are a couple of good treatments for this type of EM, which would also make you feel a bit warmer and be able to stay warm without triggering a flare.
karenatl said:Nel, I have felt the same way as you. If this condition gets worse when our feet get over heated & can't cool down properly then why do I have it worse in the winter months? Very confusing for me. I know, I very rarely wear anything but flip flops & sandals all year round. I just put a small light sheet over me (but not my feet) and elevate my feet. I do better with the air cond rather than the heat which is needed in the winter. Also, my torso has to be warm but my limbs need to be cool in order for me to be comfortable & not trigger the EM. In the summer I can go outside mainly when I can stick my feet in the pool.
Ocker, I saw on Domina's discussion - "Vasodilation" that you are new - me, too. I'm kind of confused about the same thing - 3 sub types of EM. Now I'm wondering if one type is vasodilation, a second type is when your feet get cold (too cold a soaking, or the weather) you over-vasoconstrict, and then over-vasodilation in reaction, and the third type thrombocytosis (or any other of several myeloprolific blood disorders - which a blood test usually would show). I'm realizing I've been in thee first type category for a couple of years, but just in the last month noticed the vasocontricting, whitening effect of over-cooling. I have to wonder if I've moved ("worsened"?) into the second category.
If so, then I'm making a guess that the vascular reactions of EM are the results of Nervous system (autonomic?) involvment. There's a lot of research about both vascular and nervous system involvment. Dr. Mark P.D. Davis, and Dr. Sandroni, of the Mayo Clinic, Rochester, NY. And a bunch of Norwegians at the University Hospital of Oslo, Norway, ((Cato Mork, Claes Asker, Goran Salerud, Knut Kvernebo).
I hope the best for you. Jane