February 18th, 2017

Erythro­melalgia: hotfoot [Part I]

Here’s an article about a woman whose complaint was feet that were hot and red:

Melissa Curley Bogner was baffled: Why did her feet feel suddenly hot — in January?

The article goes on to describe her doctors’ befuddlement, their blind-alley treatments for infections and the like, before the patient herself Googled her symptoms and came up with several possibilities, among them erythromelalgia:

Another option was erythro­melalgia (EM), a rare and poorly understood disorder; the term literally means “red limb pain.” First described in 1878, the condition is characterized by red, hot and painful extremities, usually the feet and less commonly the hands.

Well, the doctors could have saved themselves a lot of trouble if they’d asked me, because that was my leading theory the moment I began to read the article—actually, the moment I saw the photo that illustrated it:

eryth

Why? Because I had erythromelalgia for many many many years (at least 15, I’d say), beginning after I hurt my back in 1990. In those days, the internet wasn’t available, and my puzzled doctors (and I went to many, including experts on back injuries) had very little to say to me except that they weren’t familiar with it but in my case it seemed to come from a disturbance in the sympathetic nerves secondary to my back injury. I only discovered the name of the affliction many years later when I Googled the symptoms, just like Melissa Bogner.

There are many possible causes, but often no cause is found at all. I don’t think it’s quite as rare as the article says, but perhaps it is and I’m just sensitized to it and especially aware of it. It’s a strange affliction that can be mild or serious.

For over a decade, erythromelalgia was the bane of my existence (although not the only bane; see this), and I had to modify my life in many ways to deal with its burning pain: different shoes and socks (often sandals), sometimes putting feet in cold water, uncovering my feet at night and having a fan blow on them, avoiding heat in general, not being able to walk for too long, being unable to walk on the beach.

Doctors told me that in my case the temperature regulation in my feet had gotten its thermostat stuck on “on.” I’m not sure whether that’s a good explanation for all erythro­melalgia cases, but it certainly seemed to fit mine quite well, and that was the way I came to conceptualize it. At the time, there was no medication that could help. Later they discovered that for some people, drugs that usually treated epileptic seizures could be useful, but when I took them they were only marginally effective for me.

One of the many odd things about EM is that you can see it, and even other people can feel it. When mine was very active, for example, my feet would turn bright bright red, and if a person touched them he/she could almost feel the sizzle with the hand. So no one suggested I was feigning anything; it would have been quite a feat (pun intended) had I been able to do that.

The problem sounds trivial, perhaps. But it was not. In addition to being painful 24/7, it was frightening and limiting. It had started very suddenly one day about six weeks after my initial back injury. I had taken a bath and gotten out of the tub, and I noticed that one of my feet felt odd, sort of numb but sort of painful at the same time. These odd and difficult-to-describe sensations changed over time in an unpredictable manner (they are called paresthesias; I’ve described that aspect of things here in some detail). They have a creepy quality that adds to their awfulness.

An hour passed, and my other foot began to have the same sensations, so that now both were disordered and strange. It felt as though I were walking on scratchy wool socks, or had blisters on the soles of my feet, but my feet were bare and there were no blisters to be seen. I had no idea what was happening, and I was frightened.

Over time it did not go away, but it morphed in unpredictable ways. Some days were better than others, but in general the nights tended to be worse. I had to replace all my shoes and all my socks. The socks now needed to be super-smooth, and even then they felt scratchy. The shoes—well, no shoes were comfortable, but I found one or two that felt less uncomfortable (they tended to be ugly). When I walked on a treadmill (my usual exercise; it was wintertime) within five minutes or so the burning would start, and it would get worse for a while and then usually stabilize enough for me to be able to finish. After my walk I’d shower, soak my feet in cold water, lie in bed with a fan on them, and wait till they cooled down at least somewhat.

This lasted for over ten years.

[NOTE: This is the first part of a 2-part series.]

10 Responses to “Erythro­melalgia: hotfoot [Part I]”

  1. parker Says:

    And I thought tinnitus was devilish, this sounds (pun) like an awful infliction.

  2. Mac Says:

    Yeah, I think I’d take my tinnitus over that, although there’s no real hope of tinnitus ever going away (short of death). At least I can ignore it most of the time. And it doesn’t interfere with sleep.

  3. parker Says:

    Mac,

    It does interfere with my sleep but once too far gone to stay awake I sleep deeply for 6 to 8 hours. Burning feet is a place I do not want to experience.

  4. mollyNH Says:

    These phones, drat. I just posted several suggestions to the post on this topic you did back in August, check please not interested in reposting too pooped.

  5. Esther Says:

    Oh Neo, that sounds awful. Coping with that must have been an ordeal.

    If misery loves company, once I had an episode where it felt like my body was being scorched on a radiator. It was really painful.

    After spending some time googling– my doctor had no idea what I was talking about– I decided it was probably a bizarre reaction to a medication. So, I stopped taking it and drank boatloads of fluids and tomato juice for the potassium, thinking it might help. It seemed to and after a few days it eventually it went away.

    But, 10 years with your feet on fire, oh god. I can’t imagine.

  6. Director Mitch Says:

    I’d trade my tinnitus for this I think. T can be pure hell, but without the heat.

  7. Frog Says:

    I await Part II as to whether it proved to be primary or secondary.

  8. AesopFan Says:

    This lasted for over ten years.

    [NOTE: This is the first part of a 2-part series.]

    … talk about cliff-hanger endings ! …

    I hope the second part tells us how itended — I can’t imagine being in such pain for 10 years, and remaining not only functionally sane but intellectually productive, as you have.

  9. EM Warriors: Patient Support &Information Network Says:

    We are so sorry that you have erythromelalgia. Have you any support or information needs?. Our non – profit org educates, EMpowers and embraces all those living with erythromelalgia and its comorbidities like fibromyalgia, lupus, arthritis ,etc. We also work hard raising awareness and raising funds to sponsor research. Join the EM Warriors website , Facebook or Twitter.

  10. TommyJay Says:

    It sounds a little like thalium heavy metal poisoning. Though Tl poisoning symptoms are a tingling and needle like pain in the feet, rather than hotness. Thalium is not a super rare toxin, but maybe rare enough to elude standard tox screens. Heavy metals can, in general, accumulate over long periods of time.

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Previously a lifelong Democrat, born in New York and living in New England, surrounded by liberals on all sides, I've found myself slowly but surely leaving the fold and becoming that dread thing: a neocon.
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