New here with questions

Here's my background and some questions...

I've have had episodes of Raynauds for over 25 years. Unpleasant, but not particularly painful. Two years ago, in winter, the circulation in my toes went whackadoodle & turned into horrid, painful chilblains.

I went to a podiatrist, who said that it was the worst case of chilblains she'd ever seen, and recommended seeing a Rheumatologist because of the association of Raynauds/chilblains with Lupus (and I have other conditions which are autoimmune in nature), but the symptoms subsided, so there didn't seem much point.

Now, I'm about 4 weeks into another flare up. It's similar to the chilblains, but different. In the case of the chilblains, it got worse over the course of a week and a half or so, peaked with burst capillaries & sloughing skin, and healed up quickly after that.

This time though, my toes are on fire almost constantly. Wearing shoes and being on my feet makes my toes swell up into fiery little sausages. The seams in my socks make me want to scream. The pain of the friction of my blanket against my toes keeps me awake half the night. I stay barefoot at home, and try to wear open toed sandals when out (but it's only 40 F in Chicagoland, and cold seems to set them off too). They feel (and look) better if I can get off my feet & cool them down - but with 2 kids to tend to, that's not much of an option. And the relief is temporary. It's been going on for about a month now, and I'm beyond frustrated.

Thus far, it's all in my toes, and maybe an inch up into my feet. Does EM ever present like this? All the pix I've googled have whole foot or hand involvement. Not just the toes, which makes me wonder if I'm even on the right track with suspecting EM.

What specialty of medicine seems to be most knowledgeable about this? Podiatry? Rheumatology?

Many thanks for this forum.


Welcome to group!

My experience is that EM can present itself in a manner of ways. Mine stared right knee, then ankle, then toes - feet - hands I know have all over body including my face. What you describe sounds like EM - we all use the like 'on fire' simile to describe the pain. In UK its neurology, vascular that deals with this. Although from what ive read and am experiencing EM is hard to get diagnosed wherever.I think in USA its neurology, rheumatology and dermatology also deal with EM as well. Read the discussions on here. There are some specialists names floating about.There are also some links.

God bless

I was diagnosed by a neurologist after seeing a rheumatologist and a dermatologist. I live around Indianapolis and any big university with a medical school nearby - where they are teaching young medical students - is a good place to go. The neurologist told me he sees one new case a year. Mine started in the right knee then went to my feet. I've been on amitriptyline for a month and I thought I was in "remission". When I started working in my yard and wearing shoes for several hours, I noticed a burning in my right foot again. My feet started out with intense itching before the burning started. So far the left foot is good. It sounds like getting the right combination of medicine helps. I recommend reading Dr Jay Cohen's article online. It tells of all the meds currently being used to treat EM.