It's now been a month since I first found this community and I want to share an update on where my treatment currently stands.
I first introduced myself here:
The past month has seen a lot of positive change.
First, I ended up switching doctors. The rheumatologist who diagnosed me with "seronegative arthritis" was no longer serving my needs. I set about finding a new rheumatologist and returned to the hematologist who originally treated my anemia in 2013. Since I essentially diagnosed myself, my appointments with them were basically to pitch my own ideas. Both doctors agreed I was experiencing flares of erythromelalgia. 31 days ended up being the magic number for a correct diagnosis, from the day I first noticed my knees were red (January 29) to the day I settled on erythromelalgia as the likely cause (March 1). Not bad, right?
Second, I wanted to investigate my hematocrit as a possible causation. Because I had been treated for anemia, I had a detailed record of my hemoglobin and hematocrit over the past 2 years. Both had moved higher than at any previous point and were now slightly elevated above normal averages. This was a point of contention with my previous rheumatologist and primary care physician. Neither thought my levels were that high. If you just go by averages, that's true. However, I am my own unique individual. I thought they still might be too high for me in this particular case. The hematologist agreed and ordered phlebotomies.
Third, the phlebotomies seem to have been very successful. My symptoms have not entirely resolved, but they have dramatically reduced. I am no longer experiencing flares like I once was. I sleep normally, no longer needing to keep my legs elevated or cool my knees at night. I am able to stay in bed and sleep in normal, undisrupted sleep cycles. I've been able to return to some physical activity, as well. These are all very welcome improvements!
So where do I go from here? I had my second phlebotomy on Thursday and continue to see improvement. The flares still occur in some capacity, but it's like the fuel has been removed. The power and intensity are gone. The erythema (redness) and warmth are but a fraction of what they once were. The dominant feature now is a basic tingling. Nerve pain? If I had to put a number on it, I'd say my symptoms have reduced 80-90%.
I want to cure this entirely. I'll continue to evaluate over the next week and then decide if further intervention is needed. I've attached some BEFORE and AFTER photos in the comments to show what the flares were like before the phlebotomy and what they are like now after.
Thanks for all the support!