Isn't it hard when you have a disease that nobody understands. If you have cancer or heart trouble people know you are in distress and understand, but with limited scleroderma (LSSc) nobody has ever heard of it and you feel quite alone as nobody understands how or why you are suffering.
When I visit my GP or have had to go to an emergency department, it's quite clear that the doctors have no idea of what it is and just chastise me for reading sites like this one. It's as if they are too embarrassed to admit that they have no idea of this disease at all.
The only person who has any idea is the Rheumatologist and he's just made an appointment for me in 7 months time (a lot might happen in 7 months). He has however ordered esophageal tests, lung function testing and a heart ultrasound (not sure what a heart ultrasound is likely to show).
My friends and family switch off as soon as I try to explain it and the doctors simply want to ignore it and put it down to lack of exercise (as I've said before, I do a fair amount of walking, so long as the weather is fine - min 30 minutes but sometimes 60 or 90. At 57 it's hard to do much more strenuous).