Before diagnosis: from adjustment to diffuse
symptoms to excruciating pain
Before diagnosis, most of the patients experienced
diffuse, protracted (sometimes over many years)
symptoms for which they did not seek treatment.
Pain attacks came and went; some were strong and
passed quickly while others were more prolonged.
Typically, the patients put up with the attacks.
One woman spoke about how one night she had
diffuse symptoms and tried to find an explanation:
‘It usually came when I had eaten too much… I
felt the pressure at night… and I took out all the
medical books and checked and I came to the
conclusion that at least it wasn’t a heart attack.
I felt a kind of pressure that wouldn’t go away.’
(Patient 21).