Erythromelalgia Diagnosis…And Leaving Open Possibilities
Many of us- desperate for answers- begin to diagnose ourselves with erythromelalgia while researching the internet. We are relieved to find our affliction has a name, and then we are thrown into a tailspin when we learn EM has no silver bullet cure. A diagnosis of EM is a diagnosis of exclusion. Other things are ruled out making the zebra (AKA- rare) disease of EM more likely. Most EM is “secondary” meaning it is driven by another condition. Good medicine then seeks to address the root cause in hopes of making movement with the erythromelalgia as well. I often ask people wondering if they have erythromelalgia these questions-
1- Does heat make it worse?
2- Does cooling make it better?
3- When you lie on your back and stick your feet straight up into the air, does the color of your feet improve a bit rather quickly?
If they answer “Yes, yes, and yes”, we are off to the races. There is much we can do to support healing. My priority is helping people uncover and discover their unique root cause. In doing this, we can provide the body with the support it needs. We can invite the body back into balance.
In addition to ferreting out a root cause, I implore people not to get too attached to their illness label. It certainly helps to know something is wrong- so wrong that there is a name for it- so wrong that once you have a diagnosis formerly disinterested doctor’s peer at your burning feet with curiosity. If only a name meant a cure…
Why do I want you to stay only mildly enthused about a diagnosis of EM? Because when we fall down the rabbit hole of the EM internet world, we can become very afraid. People who have healed from this disease rarely stay up late at night posting on the horrors of erythromelalgia. Instead, they go on to live their big, beautiful lives. When you enter the EM internet landscape, you inevitably compare yourself to others. At first it may feel good as you tell yourself, “At least my EM isn’t as bad as hers”. Then you quickly devolved into, “But what if it gets worse? What if her life is soon my reality?” In the end- no matter how you slice it- you become very afraid.
EM sucks your energy dry. It takes mountains of motivation to continue moving forward with this illness at your side. Be careful where you spend your energy currency. Traffic in sites that stoke hope and not fear… if you choose to spend your finite energy trafficking in internet EM porn at all.
Over 5 years after diagnosis, my EM is in complete remission. You can read more about that journey here. If I could do one thing differently, I believe I would have clung more loosely to my diagnosis and all the fear that it entailed. I would have believed in my body’s ability to heal. I would have spent less time trying to fix my “broken” body and more time seeking out pleasure. In the end, EM is a part of who I am, but it is a small part despite many years of heavy airtime. Let my story of complete remission- from scooter to 180-degree saunas- open possibilities for you. And if you fall down the fear-based rabbit hole, be gentle with yourself. While pulling yourself out, remind yourself of all that you are outside of your diagnosis, of all the possibilities of healing that await you, and that sunshine is rarely found in a rabbit hole.
You can read more about my journey as a medical provider hellbent on healing her own erythromelalgia here.
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