Toe Lesions - EM Connection?

For the second winter in a row, I’m experiencing a problem that seems to be related to my EM, and I’m wondering if anyone else has experienced it. (I also have Raynaud’s, which may be an aggravating factor, but I’ve had Raynaud’s for many, many years and never had the problem I’m about to describe, whereas my EM has only been around the last several years.)

Right at the end of October, I experience my first EM flareup (itching followed by redness, pain, and swelling in my toes). By December, I have open lesions on my toes. Some of them start as blisters. I think when my feet swell it increases contact with socks and shoes, creating chafing. But I’ve also noticed the skin of my toes seems to get compromised, more fragile. And it may be that just the swelling causes the lesions? Anyway, I then have to carefully cover and bandage the lesions every day after showering and cut down on my walking or stop it completely. (Walking is my only form of exercise.) Last winter I didn’t heal up till some time in February. Has anyone else had this problem? Any insights or suggestions? Thank you in advance!

The EM swelling shouldn’t typically cause tissue breakdown. This is mostly caused by tissue ischemia which could be from your raynauds or not keeping your feet warm enough. This is also likely due to this occurring only in the winters.

Thank you for replying. It seems my challenge then is finding that temperature “sweet spot” where it is not cold enough to trigger my Raynaud’s but not warm enough to trigger my EM. Or am I wrong that heat can be an EM flareup trigger? It seems to be for me, but maybe there is another factor causing it and I haven’t spotted the pattern yet—I know too much walking or standing seems to sometimes contribute. My husband thinks my feet being cold can be an EM trigger. (I tried to tell him it was cooking and housework, but he wasn’t buying. :slight_smile:).

EM usually presents with pretty easily observable symptoms. Erythema and redness when exposed to heat and a rapid resolution of symptoms when exposed to the cold during a flare up. However, there is a very common similarity with Raynaud’s called hyperemia. This is when your extremities are ischemic and very cold with poor blood supply and then are exposed to heat or caused to warm up by walking, moving around, etc. the extremities become red and burn for a period of time while bloodflow returns to the extremities. This is a much more likely causation of your symptoms as EM is very rare while Raynaud’s is very common. Have you tried keeping your feet warm all the time and observed what happened?

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I have sores on some toes on both feet and split and broken toe nails. For 2 years, both feet and lower legs have had broken and weeping skin that seems to never heal because of the constant burning. My feet are never cool in summer. All these wounds are caused by 5 years of ER, secondary to MS, with 24/7 burning and swelling. Wonderful NHS district nurses dress them in zinc bandaging once a week and I do it the rest of the time. I can’t get out in sandals, because my ankle bones are covered in raised, weeping, heat spots that are too sore to bear any pressure. Thanks God for crochet and books as I’ve not been out since March and have just learned to be patience and keep faith and hope to get better again soon.