Erythromelalgia and Raynaud’s

I hear it repeatedly, “I had Raynaud’s for years and then developed erythromelalgia”. Although the literature describes the coexistence of Raynaud’s and EM as rare, that is not my experience.  I am a medical provider who has EM, and after putting my EM into complete remission, I talk to others with EM on a daily basis.

When diagnosed with Raynaud’s, it’s a bit perplexing but honestly barely crimps your style. That was my story even as a medical provider. You have episodes. You run your pale fingers under warm water when needed. You wear warmer socks. Life goes on. Yet when EM enters, your life can seem to come to a screeching halt. You can no longer stand for longer than 10 minutes. The pain is enough to bring you to your knees. If Raynaud’s was a distracting drizzle, EM is a life altering tsunami.

Erythromelalgia is aggravated by heat and causes either intermittent or constant pain and redness in the feet and less commonly hands or face. Raynaud's phenomenon occurs in response to cold and presents as paleness of the fingers, toes, or even earlobes. EM is aggravated by heat, Raynaud’s by cold. How can these apparent opposites co-exist?

In both cases, the autonomic nervous system in confused. As I often say to clients, “Your blood vessels have gone a little wonky”. Traditional allopathic medicine hands you a band aid but never a cure. I didn’t want a band aid. I wanted an entry back into life. I wanted to stand without pain, to linger in grocery aisles, to lie in a hot bath. Rubbing a cream on my feet that took my pain from an unbearable “10” to an excruciating “9” wasn’t cutting it.

Getting to the root cause of my EM (and Raynaud’s!) is what cured me. I had to look further upstream and ask more intelligent questions… What was causing my autonomic nervous system dysfunction? Why was my body acting in this way? Surely my migraines, EM, and Raynaud’s were somehow connected. Indeed, finding my root cause led not only to a return to steamy showers but also to an end to headaches that would leave me in bed with ice pressed to my head.

Might I posit that your Raynaud’s was a gentle red flag while your EM is more akin to a slap upside the face with a flagpole. Why should you care? Because in following the cookie crumbs- in pondering the ways that your body appeared to be dysfunctioning over the course of your life- you just might find your ticket back to health.

It turns out the frequent ear and sinus infections as a kiddo were a clue, then came Raynaud’s, migraines, and eventually EM. My root cause was an inability for my immune system to identify and remove mold inhaled while living in a home with a water leak. Your root cause may also be Chronic Inflammatory Response Syndrome, or it might be something altogether different such as heavy metal exposure. Here’s the thing- If your medical provider doesn’t know to look for something, they won’t find it. Sadly, it takes almost two decades for research to trickle down into everyday medical practice. It is my belief that no one will look harder for your root cause than someone who suffers from your exact same rare illness. Take my hand friend. You are not broken. Let’s get to the bottom of things together.

You can read more about my journey as a medical provider hellbent on healing her own erythromelalgia here.

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