Oh gods I would die my erythromelalgia would murder me I'm glad they are working for you, though!

It also bothers me that my own POTS symptoms get worse in autumn as the weather gets colder And (annoyingly) so does my other "blood vessels wonky" problem, Erythromelalgia bsky.app/profile/unto...

I've had good things about IgG infusions for SFN, FWIW If friend is near DC I can recommend a doctor who does them and also knows what Erythromelalgia is (though there aren't many treatment options)

I want to say certain vitamin deficiencies can potentially cause redness, as well as metabolic or endothelial dysfunction I've got a recent thread about some of my experiences with Erythromelalgia here bsky.app/profile/unto...

FYI, I don't know of anyone with just facial Erythromelalgia, I think the hand and/or foot involvement is mandatory It might be worth double checking CBC for elevated RBCs or hematocrit (note dehydration can artificially increase hematocrit levels). Polycythemia causes redness too

Hopping in to say that Erythromelalgia sometimes affects the face and ears etc, and that is notoriously painful. I have it but mostly in my feet/hands, and I suspect it is triggered by my MCAS It's typically burning/redness that is worse at night or due to temperature changes

And so I come back to how this is such a common experience with a complex chronic illness Because as bad as this is, this is the Lite version due to privilege and a little luck Erythromelalgia may be rare, but having no treatment or medical guidance is not bsky.app/profile/unto...

The best answer I have been able to come up with about my own Erythromelalgia is this: It's some kind of Endothelial dysfunction Probably caused by inflammatory signals from my immune condition And also exacerbated by gut micro biome dysbiosis

Additionally, I also have an immune disorder that causes chronic inflammation (among other things) And I'm pretty sure the Erythromelalgia flares were generating a lot of Reactive Oxygen Species (ROS) which can also contribute to inflammation and tissue damage

One of the only ways to cope with Erythromelalgia flares is to use gravity Elevate legs and hands so it's harder for excess blood to pool there At my worst I had to have my feet elevated above my heart for 22-23 hours per day Or be awake in pain all night