I would stop trying to convey how bad it is and start saying what you want them to do. How long have you been on reading the leaflet?

Everyone here blames the drug. Half the time it is the appointment schedule, not the molecule. Currently on reading the leaflet myself.

Fifteen years of this and the function column is the only one that changed anything for me. Also, one page of history, printed, handed over at the start. It changes the appointment. Four months in on reading the leaflet and it lines up.

Following this because I am in the same place and have no idea what to ask at the appointment.

Fifteen years of this and the function column is the only one that changed anything for me. Also, one page of history, printed, handed over at the start. It changes the appointment.

Same here.

The pain score conversation is thirty seconds of my life I will never get back, every time. Not on reading the leaflet but the pattern is familiar.

Small wins count. Walking to the mailbox is a data point.

Function over score.

Is it normal to feel worse before better? Nobody told me that.

Access to mugs should be on the clinical questionnaire.

Half of what people describe as tolerance is a change in the underlying condition, and the two need different answers.

Print the page.

Interdose restlessness is distinct from the original symptom and worth naming separately.

Everyone here blames the drug. Half the time it is the appointment schedule, not the molecule.