I have been on long covid for five years and the thing nobody warned me about is the side effects.
Some days are fine and some are not and there is no pattern I can find, which makes it hard to plan anything.
My pharmacist was more useful than the appointment, and it was a two minute conversation at the counter.
There is a point in the afternoon where the effect is gone and the restlessness starts, and that point has moved earlier over five years.
I asked for the refusal to be noted in the record and got what I asked for within a week.
Not looking for a protocol, just perspective.
My pharmacist has become my actual doctor and I am at peace with it.
Ten percent cuts, of the current dose not the original. That is the arithmetic that keeps it survivable.
My pharmacist has become my actual doctor and I am at peace with it.
Worth asking what specifically was measured. Pain scores move with mood and function does not.
I would stop trying to convey how bad it is and start saying what you want them to do.
Sorry for the basic question, but how do you actually start one of these diaries? Not on long covid but the pattern is familiar.
It gets smaller. Not easy, smaller. That distinction kept me going.
Same here.
Same for me with long covid, unfortunately.
Is it normal to feel worse before better? Nobody told me that.
Is it normal to feel worse before better? Nobody told me that. Five years in on long covid and it lines up.
Same shape here, different drug. The thing that helped was documenting the refusal rather than re-arguing it. They refer rather than write. Same for me with long covid, unfortunately.
How do you tell the difference between the drug working and just a good week?
The pain score conversation is thirty seconds of my life I will never get back, every time.
Ten percent cuts. Slower is faster. Side effects was my main issue with long covid too.