....agony is how I would describe it. So it has been a year now since mine started... I had half hour sleep the other night,has gone from burning face to neck, chest-front and back and down legs and arms ... some days minimal some days a lot to cope with... saw Neurologist who didnt know what it is... so am left to figure this out myself. ..we do not have a lot of specialists where I life.... have ageing and other illnesses on top of it.. right now almost bedtime and face and even inside nose so painful, burning.... no swelling; not really on my feet but have p.m. in feet/cramping at night...
is it because not many people have this that no one seems to know what it is or what to do and they really dont seem to understand! ...
It's hard to prove your flesh is burning inside and out with no obvious signs, although when on my face it can be flushed but not always.... sorry to read your experiences too... but hope for a cure, when have been told they dont know what it is, doesn't appear possible 🙁