Hello all. I have noticed recently that sometimes during a flare, the outer side of my right big toe will be hot, while the inner side remains cold (at least during a mild flare, as the entire toe becomes hot eventually). Or when I'm not flaring, the inner side of the big toe will feel much colder than the rest of my toes. I looked up the innervation of toes and found that, indeed, the two sides of the big toe are supplied by different nerves. Here's a link to a diagram:
I don't know what, if anything, this tells us about EM (also know that I don't yet have an official diagnosis, but nothing else fits my symptoms - a boat too many of us are in), but I thought it an interesting find worth sharing.
Have any of you noticed flare patterns that fit the diagram?
A sidenote: I thought to look this up because I get nerve irritation in my cubital tunnel (elbow), which affects only the pinky and half of the ring finger.
Strange I get that too. I don’t know if it feels cold because a it’s just not burning and it’s against other burning skin or if it is indeed colder than normal. I can’t depend on my sense of touch to tell me the truth any more. I have both EM and the opposite with Pernio and raynaud’s. What my hands feel depends on if they are burning or cold. Even a few fleeting moments of normal every once in a while! I get that sensation in my hands too partial burning and partial freezing as you stated in a milder flare before the burning takes over. I always thought it was a different grouping of blood vessels malfunctioning but it makes since it is the nerves! Take care,
I have sharp frequent pain in one toe on my left foot...is knife like and comes and goes...can be sleeping or up and about it does not make a difference...not even sure it is related to my EM...lasts sometimes 5 min or could be 30....anyone else have this problem?
Alina, thanks for your reply. Everything you wrote sounds just like me - I've got the pernio/chilblains right now, so that every step I take presses against those tender spots. Urgh! I also can't trust the temperatures I feel with my hands, always checking water temperature with my forearm/wrist before showering or washing my hands.
When the "halfsies" flaring happens on my big toe, that inner side feels like ice on my other toes, but my fingers are usually cold, so that part often feels almost normal to the touch. Oddly, this half-flaring toe seems a relatively recent phenomenon, having been obvious for only the last few months (even though I've had the slowly-increasing EM symptoms for 3 years). I will definitely be telling my new rheumy about it next week!
Alina Delp said:
Hi LibbyK. Strange I get that too. I don't know if it feels cold because a it's just not burning and it's against other burning skin or if it is indeed colder than normal. I can't depend on my sense of touch to tell me the truth any more. I have both EM and the opposite with Pernio and raynaud's. What my hands feel depends on if they are burning or cold. Even a few fleeting moments of normal every once in a while! I get that sensation in my hands too partial burning and partial freezing as you stated in a milder flare before the burning takes over. I always thought it was a different grouping of blood vessels malfunctioning but it makes since it is the nerves! Take care, Alina
Bingolover66, I get sharp pains in the end of individual toes on occasion. Very disconcerting. If I'm asleep it wakes me. I have described it as feeling like someone is touching the tip of my toe with a hot poker repeatedly. It is very painful and makes me jerk. It sometimes last for as much as 30 minutes to an hour. I also have spinal stenosis. The tops of my toes will turn almost purplish, be super heated on the top but cool or cold on the bottom. I haven't thought to check the sides of my toes. I had carpal tunnel and the little finger and half of my ring finger were never numb.
I also have carpal tunnel.....although all my fingers get numb and carpal tunnel is only supposed to affect the thumb and the first two fingers so it is a combonation of both the EM and carpal tunnel....seeing a specialist as soon as I get the appointment to do surgery. My toe is the same, sharp pain like a hot poker...but can touch the toe and it does not hurt....just another wonderful side effect of EM...after 19 years nothing should surprise me.