Home » Erythromelalgia : hotfoot Part III

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Erythromelalgia : hotfoot Part III — 19 Comments

  1. 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. 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. 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. 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. 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. Irene:

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

  7. 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. 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. 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. 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. 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. 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. 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.

  14. 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.

  15. 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.

  16. Mike K:

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

  17. “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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