March 11th, 2017

Erythromelalgia: hotfoot [Part II]

[If you haven’t read Part I, you probably should take a look.]

When I suddenly began to exhibit symptoms of erythromelalgia I was in my early forties, and it was just one of many mysterious and distressing things that were happening nearly simultaneously to me. I had hurt my back badly, with radiating sciatic pain into both legs. I had nerve injuries in both arms from the swimming that was supposed to help my back but didn’t. And then on top of that the puzzling hot and bright-red feet.

The doctors (and there were a series of them—orthopedists and neurosurgeons and neurologists in particular) suspected I might have a systemic disease because I had so many symmetrical symptoms in so many places, and so on top of everything else I was terrified that was the case when they started testing me for MS and a host of more obscure illnesses.

Fortunately, I didn’t have any disease, although it took several months of angst (my angst, that is) for them to come to that conclusion. The doctors concluded that I’d had a series of near-simultaneous injuries, several of which were expressed in burning pain, and one of which (the hot feet) was especially mysterious and rare.

This occurred in the early 1990s, before the internet was all that active. So I felt completely alone in this because I had no way to find other people with the problem, if such people existed. I didn’t even have a name for it. In addition, when I went for a consult with a big big back specialist on the west coast, he said he’d had patients with foot pain from their backs (of course), he’d never seen anyone with hot and burning feet. Visibly hot feet, I might add.

This further frightened me. If one of the biggest back specialists in the world had never seen it, what on earth was going on with me and why?

In those days there were also fewer medications for nerve pain, and since no one was offering me any relief, I located a behavioral psychologist specializing in chronic pain. This was also a relatively new field at the time. He had me listening to visualization tapes, including one that quickly became my favorite. I was supposed to relax different parts of my body till I was very mellow (not easy when you’re in that sort of pain) and then imagine a beautiful beach—waves, sand, warm weather, the works.

And then I was to visualize walking towards the ocean and stepping into the water—the cold, lovely water. I was supposed to imagine how this would feel. It was actually the middle of a New England winter, and this summertime fantasy was a pleasant thing to think about on several levels. But it was especially wonderful to think of those gentle waves lapping at my feet and cooling them off.

I listened to that tape every day for many months. And then the real summer arrived, and some friends from the west coast came to visit. One day while they were in town we decided to go to the beach. This would mark the first time I’d actually been to the ocean in the physical sense since I’d hurt myself, and I was excited at the thought. I was especially energized by the idea of really honestly and truly putting my feet into the cold water (the ocean is really cold in New England).

And so I did. The sand was not too hot, and the walk was not too long. But still, by the time I got to the water, I knew something was very very wrong. The abrasive sand had stirred up my nerve-damaged feet, and the water—although certainly very cold—had an almost knife-like quality that added to the burning pain rather than subtracting from it.

I stood there for a couple of minutes, waiting for the bad feelings to subside. They didn’t. And so I walked back to where we’d set up our chairs and towels, and I waited some more.

It felt like someone had turned up the dial on my feet and forgotten to turn it down. It was about two months before my feet went back to feeling the way they had before that day at the beach, which was hardly “normal” but at least was better than this.

Some time during those two months I took that beach visualization tape and threw it across the room. And then I put it in a drawer and never listened to it again. In fact, after that incident I had trouble doing any relaxation or visualization at all, although I tried it several times over the years. I felt betrayed, and even though I knew this was unreasonable, I couldn’t shake the feeling.

I knew that visualization is fantasy, and walking on the sand and actually putting your feet in the water is reality. The first was a mental exercise; the second a physical one. But I was angry. I was depressed. And I was frightened.

[To be continued in the grand finale, Part III.]

12 Responses to “Erythromelalgia: hotfoot [Part II]”

  1. groundhog Says:

    At least with the Internet, even if you don’t know what’s wrong, you can usually find people with similar symptoms.

    Maybe the best thing to happen to people with rare conditions besides an actual cure.

  2. huxley Says:

    neo: How horrible! Especially the beach part where you thought you were doing something good for yourself and it totally boomeranged, but there was no way for you to know ahead of time.

    Four years ago I was on a major let’s-get-fit program with diet and exercise. I was doing great! Then I strained my bad shoulder and the next morning it went crazy with pain.

    I took ibuprofen for 14 days instead of the recommended 10, while not being careful to always have something on my stomach. Plus I was eating broccoli with every meal, which can be tough on the gut.

    Then my sense of taste went haywire. I had this horrible taste of soap, rotting seaweed and burning plastic in my mouth all the time. My poop smelled terrible too.

    On the internet I discovered this is called dysguesia and it can be a side-effect of ibuprofen. Turns out both my sisters have run into this problem while taking motrin, so apparently it’s a family sensitivity.

    It took months for the taste to go away and years for my poop to return to normal. I now eat broccoli again, cautiously.

  3. Fred Says:

    Neo,
    We use to have very simple remedy for some sort of burning/ achy toes, my mum use to do this to get healed and its works very well.
    Please just tried you do not lose if you do.
    buy small amount of Turnip, boil the Turnip.
    Then let the water become warm and but you feet in that water for few mints and then dry your feet.

    you may need to do it more that one to get full result.

    hope this will work.

  4. stu Says:

    neo I found the visualization exercises very beneficial in dealing with anxiety. I thought it was considered a form of biofeedback. I was so relaxed when I completed the prescribed visualization that I was hard pressed to get out of the chair. Fortunately it has been years since I found the necessity to engage in this activity. I’m sorry you did not get a benefit from it.

  5. SR Says:

    Neo: Lumbar sympathetic nerve blocks?
    Cervical sympathetic blocks often work well for upper extremity causalgia (burning limb pain after injury).

  6. mollyNH Says:

    I responded to this post before,at the wrong location.What you need are mega doses of the B vitamins which are specific for nerve health. Also Alpha Lipoic Acid, given in Europe for diabetic nerve pain specifically in the feet.Its available OTC as a supplement & finally topical cortisone ointment 88 cents for a tube of it at Walmart. It will work, try it out, it’s a cheap solution too.

  7. Irene Says:

    Quite a horrifying problem, Neo, which I’ve never heard of (except for your earlier post). I’m sorry you had to endure this and hope it doesn’t return. Dancers and feet….

  8. neo-neocon Says:

    Thanks for all the suggestions, but when I get to Part III you’ll see what actually happened.

  9. delta6 Says:

    Well, Neo2, this certainly sounds awful and at least a bit medically mysterious’. You have my sincere sympathy.
    I can’t help but compare it to one of my own ‘struggles’ (don’t we all, I suppose) which is a case of “severe” peripheral neuropathy centered in my feet and legs. I have a Gabertentin Rx which dampens the symptoms but sure doesn’t resolve them by any stretch of imagination.
    Good luck to you, I hope Part III has some resolution??

  10. J.J. Says:

    This series reminds of the on line ads for health supplements. The ad goes on and on describing the symptoms and how awful they are and that there is a remedy, but the remedy isn’t mentioned until the very end of the ad. by which time the curiosity has been honed to a peak.

    Yes, get on with it. What’s the cause and the cure? Someone may actually benefit. 🙂

  11. OM Says:

    “The witch, she turned me into a newt!”

    “What happened?”

    “I got better.” 🙂

    Seriously, you’ve got on tenderhooks waiting for Part III.

  12. mollyNH Says:

    Delta6, try that stuff I mentioned to neo, it helped my diabetic FIL. Better than his gabapentin Rx

About Me

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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