New to EM - next steps?

I began having severe burning, redness, and swelling in my feet about 3 months ago. I have flare-ups daily and sometimes multiple times a day. My feet alternate between flaming hot and freezing and cause nearly constant discomfort when I’m not have extreme pain. I’d like to get some opinions of whether this could be EM or not.
A bit of background:
I was diagnosed with Ehlers-Danlos as a teen and have struggled with pain from that plus early onset osteoarthritis for years. I have several autoimmune diseases as well. (Hashimoto’s, Eosinophilic gastritis, IBS, late onset autoimmune diabetes - LADA, thrombocytosis, & fibromyalgia).
My symptoms of what I think is EM began shortly after I started struggling with neuropathy pain. I was referred to a neurologist and he performed nerve conduction testing and diagnosed me with peripheral neuropathy, small fiber neuropathy (which might better explain the fibro dx imo), and autonomic neuropathy. I addressed the EM symptoms and he told me it was a “vascular disorder” without giving a specific dx. He also seems disinclined to treat the EM symptoms but only ever addresses the neuropathy pain. I’m now on gabapentin and it has slowly been increased to almost the maximum dose which has done nothing for the EM flare-ups. (It also hasn’t eliminated the neuropathic pain but it has helped slightly.)
Can anyone offer any advice on how to approach this with my doctors so they will try to treat the EM too? I’ve looked for specialists who are familiar with EM and the closest ones I could find are 3 hours away. Is there another resource to help me find a local doctor here in Kansas (Wichita area)? Or does anyone have any suggestions on how to talk to my current doctors about the EM and not be dismissed?

I’ve added some pics of what my flare-ups look like to get other opinions on whether it seems to be EM or something else. image image

Secondary erythromelalgia is usually associated with myeloproliferative disorders such as essential thrombocythemia. In such cases, you would treat the thrombocytosis first and that should help reduce EM symptoms. Is the underlying cause of your thrombocytosis known and is it well controlled?

The Erythromelalgia Association has a physicians directory. Unfortunately, there are none located within 100 miles of Wichita.

As far as how to talk to physicians, the only advice I would have is to make sure you communicate how symptoms are adversely affecting your quality of life and be persistent. If symptoms are disrupting regular activities of daily living, make sure that is understood. Don’t allow yourself to be dismissed.

Thanks for responding! I’ve never actually had any treatment for thrombocythemia since it has never appeared to cause any issues before now. (My twin sister and I have had it since our teens.) Strangely there have been a few times it has spontaneously resolved only to reappear again a few months later. Up until now my doctors have never taken note of it at all. And since none of them are familiar with EM it’s only my own research in the past couple weeks that revealed that there may be a correlation so I haven’t discussed it with anyone yet.

I guess my main concern is which doctor to pursue this with. My primary care doctor would be much easier to get appointments with but he had never heard of EM and so far just told me to avoid activities that aggravate the symptoms. Or would it be better to ask for a referral to a different specialist? And if so, who have others found to be particularly beneficial?

Have you tried Aspirin? Aspirin can work miracles within hours for EM secondary to myeloproliferative disorders like thrombocythemia.


I did take it for about two weeks and it helped immensely. Unfortunately I also have Eosinophilic gastritis and despite being on Nexium the aspirin caused severe stomach problems. I have a history of stomach ulcers caused by NSAIDs but I’d hoped a daily baby aspirin would be tolerable and it wasn’t. :unamused:

That’s both good and bad to hear. You know what is causing your EM which is always a great first step and often the hardest obstacle for most. Have you tried an alternative method of administering it to bypass your GI system? I know aspirin can be administered via IV. That might be something to ask your doc about since it was so beneficial when you were taking it.

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It’s definitely good that I have a better idea of the cause. That’s more than a lot of other people have! Unfortunately, NSAIDs have the same effect on the stomach regardless of how they’re administered because the risk of ulcers and bleeding probably comes from aspirin’s Cox-1 and Cox-2 inhibitor effects in the bloodstream, rather than from where the drug dissolves and is absorbed. It really limits pain relief options for me especially since I have yet to find a narcotic pain med that doesn’t make me vomit terribly. :roll_eyes:

I’m going to talk to my doctor about other treatments for myeloproliferative disorders, though, and cross my fingers that he’ll know more about how to treat that or who to refer me to. I’ve got an appointment next week. Maybe seeing a hematologist would be the best next step for me?

I’m also thinking I should print out some of the research I’ve found and share it with him. Has anybody done that with their practitioners? And how did they take it? Because I find it difficult to talk to my PC doctor as he allots about 10 minutes for an appointment. Then, all he ever seems to want to do is refer me to a specialist.

So far I’ve been left waiting weeks or months before I can see anyone who can start some kind of treatment. I’m new to this and already frustrated at how slow going it is! It certainly doesn’t help that a bunch of other health issues (significant anemia, the Eosinophilic gastritis, 3 different types of neuropathy, pre-diabetes, and cardiac issues) all popped up and were dx in the same general time period (September) - on top of the osteoarthritis pain and fibromyalgia I’ve had for years. We’ve had to focus on just one or two new treatments and new medications at a time.

I guess my frustration is more a matter of having to accept that this won’t be resolved overnight. It’s hard to accept that when you’re a single mom and in misery and pain every day. It’s a lot needless to say! Sorry about the venting!! And thanks for your response and any more helpful advice or commiseration anyone wants to give!

I think going to a hematologist as a next step would be a good idea.

I have.

Some took it better than others. If a doctor is unreceptive to listening to information about EM, you just have to move on to one who will.

A word of advice: Don’t make appointments with random doctors expecting them to be familiar with EM. Few doctors are familiar with the condition due to its rarity. If you want to be sure a doctor has some familiarity with EM, call in advance to verify prior to making an appointment. That will save time and spare you significant frustration.

I use aspirin as well - but it helps with keeping my blood counts normal but really does not help the burning on my hands - I have tried hemp creams but does not help - I am now using aspercreme which helps temporarily but burning & rash really activate late at night and very early in the am waking me up
I tried gabapentin but had a bad reaction
am thinking all the stress with COVID may be adding to increase in symptoms now
of all the mds & testing I have seen and done over the past 3 years has not uncovered any underlying conditions
wondering if the stress is contributing to condition???

@MrsL I have definitely noticed a strong correlation between my EM and stress. It might be that stress hormones trigger vasoconstriction which can cause the same rebound effects that are similar to those from cooling your feet too frequently.

Edit: I would like to add that I have noticed somewhat of a desensitization effect when I expose myself more to aggravating stimuli. Last Spring I started using capsaicin cream and going for long walks and runs and enduring the burning and it eventually started going away and then stopped. The same happened for stress. Stress was a huge trigger for me but once I started medical school this past fall, I flared quite a bit while stressing for exams but once again my body began to acclimate. Don’t underestimate the power of the human body to adapt to the environment you put it in.

Stress is a popular trigger along with spicy food, alcohol and heat whether generated from exercise or outside in the sun; it varies based on the individual.

For a month straight I avoided the popular triggers and was in relatively good shape but one stressful night of work lead to a powerful flare in my feet.

I am hoping this is stress and not something else as I have not had my regular blood workups due to COVID, and I keep my thermostats low - interestingly tho, when the flare up gets really bad it is accompanied with body heat (almost like a hot flash - but menopause ended quite some time ago). I am now having a little tingling in legs for the past few weeks). The isolation has been very stressful -

Thanks for responding, perhaps when this Covid is behind us it will calm down

Stay Safe

Well, I am sort of new to EM, these discussions anyway… I do sympathize and understand the frustration encountered with doctors. Mine didn’t take it seriously at all until I had a big flare up while in his office a couple of years back. Then he took a picture of my red feet for my file… Since then I’ve developed prediabetes and neuropathy in my feet to go along with the EM. Not at all pleasant and even trickier for me to deal with. One thing the diabetic nurse gave me to try was a rubbing oil, NEUROPATHY, that has Frankincense and Myrrh in it. It worked like magic and got rid of the burning red hot feet immediately! I use it every night before sleep and it helps them calm down so I can get to sleep for a while… I recently began taking Gabapentin 3xday, with one at bedtime to help me get to sleep, too… Another sleep help prescribed for me is Trazodone and it works well, altho I haven’t been taking it along with the Gabapentin. Until last night, when I was awake for hours in the middle of the night so I took a Trazodone and slept a few more hours… This afternoon I was so tired that I napped for almost 4 hours after taking a Gabapentin… I plan to take both of them when I go to bed tonight… Without sleep I am in so much physical and EM pain that it’s really hard to keep a smile…
Yesterday I read about Mexiletene and was thinking about trying it, but after reading some others experience with heartburn, etc with it, I’m not in favor of taking it. I just don’t need another thing to cause me discomfort…