Supplements for Erythromelalgia… and Support People!
As a medical provider having experienced remission of my EM, a common question I’m often asked is, “Do supplements help with erythromelalgia?” I enthusiastically reply, “Yes!” I’m enthusiastic, because supplementation was more helpful for my EM symptoms than pharmaceuticals. Which supplements should you take? That’s a trickier question…the only honest answer is that it all depends. It depends on your other medical diagnoses, your recent lab levels, and even more nit-picky things like if your family has a history of autoimmune disease, how your kidneys are functioning, and if you experience anxiety or depression. I wish I could provide you with a magic wand list of one-size-fits-all EM erasing supplements, but functional medicine posits it takes a deeper dive into the one and only unique Y-O-U to customize your own healing supplementation regimen.
Allow me to dive a little deeper…Some people with EM have become super sensitive to many things. Their reactions to medications leave doctors scratching their heads. They may tolerate a shrinking list of foods. Rashes and hives may have taken up unwelcome residence in their lives. They may have been told they appear to have Mast Cell Activation Syndrome (MCAS) or that their lab work is heading toward the land of lupus. With these uber inflamed peeps, I would initially opt for a gentle approach aimed at histamine lower supplementation and decreasing toxin burden. I wouldn’t direct them onto the super highway of my EM Core Supplementation quite yet.
During group consults, we can work thorough my EM Core Supplement recommendations one by one (or in the case above my recommended alternatives). In approaching supplementation in this strategic way, you aren’t forgoing- say- super important anti-inflammatory Vitamin D for the sexier supplement of the week. It’s also important to understand that “normal” isn’t always “optimal”. How so? A Vitamin D blood level of 32 is considered within normal limits, but it leaves you with less than optimal nerve functioning, deficient protection against autoimmune disease, and a greater likelihood of being depressed than a Vitamin D serum level of 75. So, you say, “A higher Vitamin D blood level is better?” Well, this is why supplementation is tricky… a higher Vitamin D is certainly better to a point, but we don’t want Vitamin D to rise too high as it could cause toxicity. In functional medicine, we aim for optimal lab levels and often use supplementation to support this. It can be a bit of a tightrope, which is easily navigated along with a knowledgeable medical provider wise to the need for optimization versus accepting poor levels deemed “within normal limits”.
Along with using supplementation to support us during our journey back to health, we can also offer tools to those that love us. Wait. What? Shouldn’t they be the ones supporting us. Well, yes, and sometimes they need a little help in learning how to support us in ways that feel supportive. They’ve often been putting boatloads of energy into worrying about us. When they offer their well-meaning version of support, it can sometimes feel more like criticism or blame than love. They can bombard us with toxic positivity or reign over us with a tyranny of gratitude. When we live in the world with EM, we justify ourselves repeatedly and to so many. We live a the land of not-enoughness and apology. Rarely does someone join us in admitting that this diagnosis of EM is a garbage deal. We find ourselves forced to pretend nothing is lost, and we feel more distant and broken by the day. It’s not that those that love us intended any of this- they set out to support us- and yet here we are. The job they’ve been up against isn’t business as usual. It would be challenging for any of us. That’s why as a therapist- once on the other side of EM- I created an EM Support Person Home Study Course tin order to give loved ones access to tools that empower them to offer support to us in ways that actually feel supportive. It’s actually possible for loved ones to put less effort into supporting, yet be way more effective when they do offer support.
Here’s to supplementation, support people, and never pretending nothing is lost.
You can read more about my journey as a medical provider hellbent on healing her own erythromelalgia here.
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