Does Erythromelalgia Get Worse Over Time?
When I visited the Mayo Clinic that housed the only erythromelalgia specialty clinic in the U.S., my question was a burning one- “Will my EM get worse over time?” All of us fear it. We inevitably visit the same websites and compare ourselves to those suffering with our very same disease. Behind laptops we comfort ourselves, “At least my EM isn’t as bad as hers. I’m not bedbound. It’s only in my feet. My flares aren’t constant”. This is called comparing up. Behind keyboards we also scare ourselves, “What if my EM gets worse? Is this my future? Is that where I end up?” This would be comparing down- the ugly twin of comparing up. We live in the land of “at least” and “what if”.
What we really want to know in a nutshell is this- “Is there hope for me?” The Mayo Clinic’s Dr. Mark Davis told me that over time my symptoms may worsen, stay the same, or get better. He said it happen in about equal portions to people over time, so about a third of people worsened, a third stayed the same, and a third improved. He said that about 10% or 1 in 10 people would report complete resolution of symptoms meaning they hit the EM jackpot and recovered completely. If these were the hard facts, I wondered what I could do to tip the odds in my favor.
Enter Functional Medicine. Functional medicine isn’t satisfied with putting a band aid over symptoms. It looks for root causes. Functional medicine says, “If you’ve stepped on a nail- don’t merely treat the symptoms with pain killers- remove the nail silly!” All of us are predisposed to certain illnesses. For you and me, there was EM. For others it may be rheumatoid arthritis, cancer, a whole slew of scary things. While genetics loads the proverbial gun, our environment pulls the trigger. What pulled the trigger on my EM? Many years of eating a high sugar, nutrient poor diet, an infection treated with massive amounts of antibiotics that wiped out good gut bacteria, and a few years of living in a moldy building proved to be too much for my body to handle. Bam! The EM bullet was sent throttling through the air. It would hit me hard. It would take me years to stand again.
The upside of discovering a root cause is that once treated, we can reverse symptoms! Our bodies have a profound ability to heal. If environment drives disease, we can change our environment to promote healing. I changed my diet radically. I repopulated my gut with strains of bacteria proven to be beneficial. I moved out of a moldy environment and detoxed from the mycotoxin exposure using the Shoemaker Protocol. There wasn’t a darn thing I could do about being predisposed to erythromelalgia, but there was a heck of a lot I could do about my environment.
Does erythromelalgia get worse over time? It can, but I am here to tell you that it can also be healed completely. The gal that could only take a shower with lukewarm water while sitting on a shower chair with legs elevated went for a thirty minute walk in the desert this week on hot sand when it was 87 degrees outside. You read that right. And with zero fear of a flare. There is hope (hear that if you hear nothing else)- and in the meantime- let’s do everything we can to tip the scales of erasing EM in our favor!
You can read more about my journey as a medical provider hellbent on healing her own erythromelalgia here.
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