I am requesting a referral from my physician in MA.
From this site and internet searching I’ve learned
- progression is not clear
- underlying cause is not clear, unless it is familial
- drug treatment is hit and miss
- mental attitude can help
I have SICCA syndrome (can’t be diagnosed officially as Sjogren’s because no antibodies), have had cold hands for years but not true Raynauds, was freezing last winter, mid-May this year my symptoms started at NIGHT with morning edema of hands and face. Hands hurt when hiking, walking, in dependent postion, are highly mottled and color changes and comfort increases when I raise them. Toes look deep red when walking in heat, but no swelling, only achy pain. Hanging out in a cold basement makes me feel almost normal.
It seems to me like there might be many subtypes of EM, and that the treatment therefore might be markedly different depending on the categeory. i.e.
- secondary to blood conditions
- secondary to auto immune conditions
Then there’s mild, moderate, and life altering symptoms, and progression issues: staying the same, getting worse, getting better, remission (still don’t seem to understand remission, always seems to be ONE case study or another, nothing consistent).
Finally, I found a report out of Australia that suggested EM might be more widespread than currently thought. The researchers sought out subjects simply with the symptom of 'hot, red feet", and found many people who simply coped and had either never been diagnosed or had never even sought treatment.
Hope I can get in to Yale where at least they are interested and understand the syndrome.
My best to all of you here - there are so many for something so debilitating that no one - not even doctors - have heard of.