My Steady Improvement

Hey Everyone,

I’ve been dealing with mild EM symptoms for a couple years now and have finally found a regimen that works for me. My experience with EM consisted of burning/redness/swelling in my right big toe initially but would eventually spread to other toes. Elevating my feet would quickly bring relief and keep the flares at bay.

Context:

I’ve been working with my primary care physician on EM. Although he wasn’t familiar with the condition, he was willing to learn, reviewing the materials that I’d bring to him. My physician and a rheumatologist ran a bunch of blood work to rule out other conditions, everything came back normal.

Ingrown Toenail - this initially started a couple years ago with a chicken or the egg scenario. I started having issues with an ingrown toenail on my right big toe which was removed by a Podiatrist. Now I’m not sure if the ingrown toenail was first, leading to an EM type reaction or if the EM was first, causing my toes to swell enough to allow the nail to breach the skin. This is also a reoccurring theme for me as I’ve had the ingrown nail removed about 5 times with 4 different Podiatrists and burned with phenol but the nail keeps coming back. Site member “MNP” actually went through a similar experience with his ingrown toenail surgery and EM, here is his blog: http://erythromelalgia-in-toes.blogspot.com/2011/10/cause-of-crps-in-both-my-toes.html

Possible Raynauds – So I’ve had ice cold feet for as long as I can remember, sometimes toes change color, my mother has the same exact issue so it appears to be inherited. Then when EM struck a few years ago, I realized there’s no goldilocks zone for my feet, they’re either too hot or too cold. So I think my situation could be considered Primary Raynaud’s with Secondary EM.

Pictures of my Flares:

Treatment

Disclaimer - We all know there’s no one size fits all approach to EM, I’m simply posting what has worked for me.

So here’s some recent changes I’ve made in the last 2 months, finally getting my EM under control.

Ketogenic Diet and Intermittent Fasting (16:8) – I managed to drop 25lbs in 2 months with this method, going from 193lbs -> 168lbs.

Vitamin D – Recent bloodwork showed a deficiency, I was at 19 ng/mL, the range being 30-100 ng/mL. I took Life Extension’s Vitamin D (5,000 IU) once a day and the next month my value was 47 ng/mL.

HBP – Dr Cohen’s research showed that some improved with Propranolol, my physician and I hoped it would tackle my HBP + EM. My doctor initially prescribed 40mg twice a day and then raised it to 60mg about 2 months ago. I didn’t see much of a difference with the increased dose, although it lowered my heart rate, my blood pressure was still high. (typically around 135/95, sometimes higher or lower) It wasn’t until I tried Keto did my blood pressure drop dramatically, I’m now consistently at 110/75 and will be asking my doctor if we can decrease the dosage back down to 40mg with the hopes of weaning off eventually.

Alcohol – I’d usually have a glass of wine with dinner, decided to stop alcohol completely.

Note – Cyproheptadine, Aspirin, Feverfew and 5-HTP did nothing for my EM. (I know some have improved with these meds/supplements)

Conclusion
I can’t say which method had the biggest effect, perhaps it’s all of them working together.

All I know is that my EM appears to be in remission:

  • I no longer flare from a warm shower
  • I can tolerate the summer heat/humidity
  • I’ve transitioned from walking to jogging about a month ago
  • No longer have neuropathy type tingling in my toes at night
  • I still deal with Raynauds type symptoms (cold feet)

Here’s hoping everyone finds a treatment plan that works for them.

2 Likes

Congratulations! It’s great to hear stories of improvement. I take 1,000 IU of vitamin D daily myself. I’m not sure I’ve ever mentioned that here.

Thanks Carter,

I recall seeing a rheumatologist last year that flat out said “there’s no treatment for this condition”; felt compelled to prove him wrong.

Since my Vitamin D is in range now, I’ve reduced from 5,000 IU to 2,000 IU daily.

I had a doctor say the same thing to me. It was a dermatologist in my case. While it’s true there are no FDA approved treatments for erythromelalgia, medical journals have varied reports of erythromelalgia being successfully treated off label. I found success similar to one of those reports in JAMA Dermatology from 1999.