July 15th, 2017

Erythromelalgia : hotfoot Part III

[Part I can be found here.]
[Part II can be found here. You might want to take a look at them to refresh your memory on what on earth I’m talking about.]

The years passed but I never found a doctor who could shed light on what was wrong with my hot red feet. I remember talking to one who said he’d seen at least a few cases like mine. That was a first for me because no other doctor I’d spoken to (and there were many of them) had ever seen even one case that was similar.

I remember another doctor who said he didn’t know what was going on, but he thought my spinal injury had damaged sympathetic nerves that were nearby the site of the damage, and that those nerves were telling my circulatory system to continue to send blood to my feet when it should have gotten the “off” signal. In other words, the thermostat in my lower extremities was broken. That somehow seemed intuitively correct to me. Exactly why this might be happening to me, no one could say. Whether it would go away, improve, or worsen, no one could say.

I also learned the term “RSD,” which is an extremely severe neuropathic pain syndrome that had some things in common with what I was experiencing but not everything. A few doctors mentioned that I might have it (it’s now called CRPS, by the way). But from what I read about the condition, it was so terrible that I would have done almost anything to have avoided that diagnosis, so not having RSD was perfectly fine with me, although the possibility kept gnawing at me.

Over time, I learned a few tricks for dealing with my weird symptoms. If I found some socks that didn’t hurt me as much as others, I bought many pairs of that style so I wouldn’t run out if they stopped being made. I learned to soak my feet in cold water, to place an electric fan so it would blow on them at night and cool them, to sleep with my feet outside the covers, and to wear the same somewhat-more-comfy shoes (sandals) every day, summer and winter. In winter I wore socks with the sandals as a concession to the cold, and anyway at that point in time I wasn’t going out that much so it didn’t really matter what I wore. I owned a pair of roomy snow boots to put on in winter if I absolutely needed to, and as the sandals got more and more worn and raggedy-looking I wondered what I would do when they finally wore out.

Wearing ugly footwear for many years was the least of my worries, although as a not-yet-old woman it troubled me. I learned to tolerate my baseline discomfort, but the baseline fluctuated in an unpredictable fashion. Many things could flare me up significantly above that baseline, sometimes for months at a time. Once, I went for a massage and the massage therapist rubbed my feet. That was good for about a month of increased burning. I could count on getting worsening symptoms if I set off to do a lot of walking, too; for example at the mall.

One memorable day I was visiting New York City and set off for the Metropolitan Museum of Art. The trip involved a walk of about 15 minutes to the subway station, and about ten minutes on the other end to the museum. Then there was more walking inside the museum, of course. It wasn’t a hot day, but after only about 20 minutes at the Met my feet began to burn something awful. What to do? I didn’t want to go home so soon, after making the whole trip to get there. I wanted to see the museum!

So I sat down and pondered my dilemma. I was all alone; it was an off day and no one except a uniformed guard was in the room where I was sitting. So I glanced around, took my shoes and socks off, and sat there for a while with my bare feet on what I suddenly noticed was a marble floor.

Marble is cool. Very very cool. This is known to cooks, who like to use marble counters for pastry or candy-making. It felt wonderful on my feet. Luckily the guard decided to ignore me rather than warn me that bare feet aren’t allowed (are they? I have no idea), and he let me sit there for about a half hour as the burning began to subside and I decided I didn’t have to go home right then and there after all.

Even now, with all the information available online, I am unimpressed by what I find there about erythromelalgia, although it’s 100% more than what was available when I had it. There is very little known about erythromelalgia’s causes even today. Article after article lists the problems that can spark secondary erythromelalgia (for example), but I could find only one that even mentions back issues—and curiously, it seems to think that’s one of the more common causes of the problem (and this was written in 1992):

Calcitonin gene related peptide (CGRP) is a marker for a class of sensory ganglion neurones in the superficial spinal and medullary dorsal horn. Peripheral terminals with CGRP-like immuno-reactivity are found in tissues in which sensory stimulus is usually painful. This suggests a role for this peptide in nocicepter processing. CGRP is also an important vasodilator. A report of a patient with the features of EM was recently published showing increased staining for CGRP in the spinal cord at the point corresponding to the distribution of the perceived burning pain. As approximately 42% our primary EM patients date their symptoms from a time of back injury (unpublished observations) the above hypothesis is attractive.

None of the literature talks about erythromelalgia ever getting better. But I’m happy (very very happy!) to say that mine did.

Its departure was as mysterious as anything else about the condition. The leavetaking happened slowly, so slowly that I didn’t realize for years that what was happening was that it actually was fading away. The first sign of this was a curious one—the burning became more asymmetrical. I would be sitting in my favorite back-friendly recliner, watching TV, and my feet would slowly heat up as they sometimes did. But instead of “feet” it was often “foot.” One foot (if I recall correctly, my right) would get very hot and red, while the other would simultaneously remain relatively pale and quite cold.

This was so bizarre that I had no idea what to make of it. But it was objectively obvious; another person could touch the right foot and feel the intense heat, and then touch the left foot and feel that it was quite cold. The difference in color between them was extremely obvious too. This one-sided erythromelalgia went on for a couple of years, and then even the right foot’s symptoms slowly became less intense and came with longer intervals of relative normalcy in between.

At some point—I really don’t recall when—it occurred to me that my feet hadn’t seriously burned or turned bright red in a long time. I had intermittent symptoms, but they were milder and far more easily ignored.

That was some years ago. Now I travel without the fan I used to drag along with me when I had to sleep overnight away from home. I usually (although not always) start the night with my feet underneath the covers, just like a normal person. But my feet aren’t really normal, even today, all these many years later (over 25). The bottoms feel disordered, a trifle numb but not too bad, and sometimes they get somewhat hot. I still always untuck the sheets at the end of the bed because it helps to be able to stick my feet out of the covers now and then if they get even the slightest bit hot. I have to shop extremely carefully for socks and shoes. Even socks that feel smooth to the hand can feel rough to my feet. Nowadays there are lots of attractive shoes that are quite comfortable, so although my shoe choices are still limited, it’s much easier to find something I like. But when I travel I pack heavy, in part because I have to take so many changes of shoes and types of shoes.

And I wouldn’t even think of walking on sand without protective footwear (see Part II). In fact, I almost never walk on sand at all. But it’s a very small price to pay.

I’m writing this to give hope to any erythromelalgia patients who happen to find it. Nothing I’ve ever read about erythromelalgia indicates that the problem ever just fades away—and yet mine did.

At least, so far.

19 Responses to “Erythromelalgia : hotfoot Part III”

  1. Brian E Says:

    I have a friend who is paraplegic, suffering a spinal injury in a car accident many years ago.

    While it isn’t particularly related your condition, the workings of the body, the interconnectedness of the nervous system and how it affects everything is.

    She has no feelings below the waste, and has a cushion that adjusts pressure points, but still she feels “pain” at times. I use the quotes since the pain isn’t localized, as you would expect given her condition– but it’s pain just the same.

    And the pain may cause her blood pressure to spike to dangerous levels.

    Sometimes this is related to her just not eliminating waste in a timely manner.

  2. Mrs Whatsit Says:

    I wonder how much the pain you have endured as part of this situation, as well as the other painful conditions you’ve experienced, has to do with your political change and the clarity of mind and willingness to reconsider everything that has brought you here. It seems to me that pain breaks down barriers and brings us into worlds we did not expect to inhabit.

  3. Frog Says:

    A good writeup is found on Uptodate.com, which is by pricey subscription only.
    The piece unfortunately does not mention whether skin adnexae (hair, nails, sweat glands) become abnormal.

    Aspirin 325 mg daily, one month on, one month off is definitely helpful.
    The steps Neo mentioned as effective are mentioned therein as effective.
    There are a variety of topical Rx preps which have been helpful.
    But best of all are the follow-up data: of 94 patients with mean follow-up of 9 yrs, about 50% remained the same or worsened, almost 40 % improved, and 10% achieved complete and durable remission.

  4. Cornflour Says:

    Here’s the conclusion from a recent article charting long-term follow-ups:

    “Erythromelalgia is a rare chronic debilitating condition. Exercise, heat and night time are common triggers. Current medical therapies are seldom effective and further research is sorely needed.”

    I’ve rarely read such humility in a medical journal. Cold comfort. (Forgive the pun.)

    Citation:
    Parker LK, Ponte C, Howell KJ, Ong VH, Denton CP, Schreiber BE. Clinical features and management of erythromelalgia: long term follow-up of 46 cases. Clin
    Exp Rheumatol. 2017 Jan-Feb;35(1):80-84.

  5. Irene Says:

    How awful for you, Neo. Besides the pain there must have been tremendous anxiety not knowing what caused it or how to try to treat it other than by trial and error. And it went on for years and years!

    So glad it went away finally.

  6. neo-neocon Says:

    Irene:

    Yes, the mystery, rarity, and unpredictability of it were extremely stressful.

  7. Frog Says:

    Curious that Cornflower’s reference does not appear as best I can determine among the 48 references cited in Uptodate.com, a heavily used and highly regarded professional resource, though its continuous literature review is said to be complete through 5/31/2017, and Exp. Rheumatol. is not an obscure journal.

    Disturbing.

  8. Frog Says:

    I have now reviewed the abstract of the Clin. Exp. Rheumatology, and it is based on 46 (mean duration of symptoms 16 yrs) patient telephone interviews in UK (and Portugal?). It is apparently a catalog of symptoms and severity and duration thereof, with no therapy info cited in the abstract, though the usual reflexive plea for more research (and research funding) is present.
    The correctness of erythromelalgia diagnosis seems assumed. Neo’s experience might call that into question.

  9. J.J. Says:

    An awful condition to have. Chronic, mysterious, and with seemingly no cause and no treatment that brings certain remission. It takes someone with a desire to persevere and intestinal fortitude to keep on keeping on with such a condition. May you continue to be well.

  10. Cornflour Says:

    Frog:

    If you’re curious, here’s a link to the full text of the article:
    http://www.clinexprheumatol.org/article.asp?a=10493

    I know absolutely nothing about erythromelalgia, but Neo’s post made me curious, so I did a simple one-word search of PubMed. (The most comprehensive indexing and abstracting service for publications in the health sciences.)

    I then looked at a recent paper summarizing clinical results. As I said, I was struck by the humility of the paper’s conclusion. Apparently, you know more about the topic than I do. It was certainly not my intent to start a dispute.

  11. Frog Says:

    No dispute, Cornflour! It’s just clinical medicine.
    Your ref. is titled, “Clinical features and management of erythromelalgia: long-term follow-up of 46 cases”. Note long term follow up…by phone. Clinically that gets a Meh!
    It is mostly about clinical features and I would regard it as a minor, bibliography-building paper. Clinical features are the best-known aspect of EM.

    Curiously, Iloprost was used in 27 of the 46 patients (58%), with “benefit” in 17 (63%). This is odd because that drug is used to cause arterial dilatation, as in primary pulmonary hypertension, which seems antithetical to the objective in EM. 63% benefit is hardly trivial or incidental. That is the most important fact of this paper.

  12. LindaF Says:

    I have extremely flat arches, and some calcification of my toes due to arthritis. Two things I’ve found about shoes:

    – Men’s sandals – the hiking, velcro-strapped kind – VERY comfortable and durable. Can be adjusted for comfort very easily.
    – Bob’s shoes – check out http://rackroomshoes.com for a killer price. Some of them have the Sketchers super-cushy sole, and work with painful feet. They’re also cute and washable.

  13. Ymar Sakar Says:

    Maybe they can try melaleuca oil on this.

  14. Mike K Says:

    I just wonder if you ever tried one of the neuropathy drugs, like Gabapentin.

    Glad it’s better. I had chronic back pain that required three vicodin a day for 15 years. Then it faded away. I had a ten level spine fusion as the trigger.

  15. neo-neocon Says:

    Mike K:

    Yes, I took it for quite a while. Didn’t help me much at all. The only thing it did that I could really notice is that it made me a little more tired so it helped with sleep.

    By the time they came out with that drug for using in neuropathy patients, I’d already had the condition for years. Also, at that time I was taking it for the neuropathy in my arms, which was usually much worse than my feet. So it was my arms I was paying more attention to, and the drug (neurontin, at the time) helped only very slightly if at all with both my feet and my arms.

  16. Mike K Says:

    Arms, too?

    That has to be a variant of RSD. The CRPS term is less specific as to cause. I knew a Recovery Room nurse who got bad RSD from a tetanus booster. She was disabled.

  17. neo-neocon Says:

    Mike K:

    No, fortunately not RSD. Long story, told in several posts (mainly the one I linked earlier).

  18. Mike K Says:

    Variant.

  19. Gary D. G. Says:

    “I just wonder if you ever tried one of the neuropathy drugs, like Gabapentin.”
    Mike K.

    I’ve been on both pregabalin and gabapentin; each has interesting side effects, but both have worked for my probs.

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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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