Hi, all! I’m new to the group, and have been kind of shy about posting previously-- but I have a question that I haven’t been able to get answered with days of Google searching, so I thought asking some peers might be helpful…
I’m 25 years old, and have been symptomatic (chronic, debilitating pain) since 17 y/o. It left me unable to do anything physical without severe pain (walking even a city block, lifting anything at all, bending, etc) as well as chronic severe joint and muscle pain, subluxations, etc. I was diagnosed a year ago with EDS (they think it’s HEDS, but unsure) and went through a year of PT with mediocre results (but enough improvement to be able to hold a full-time job), and was diagnosed a month ago with an undifferentiated autoimmune disorder, which my DPT and PMR think has been exacerbating the EDS dx and slowing my progress. After a little over a month on meds for that, I’m seeing improvement and I’m very hopeful.
With PT, medications, and other things like a standing desk I’m able to work FT at this point without taking too many sick days. However, I’ve found that needing to see so many specialists so frequently has become an issue. My PM&R requires visits every 3 months, Rheumatologist made me come in 3x in a month [hopefully this will become less frequent over time with stabilization of meds, but I’m guessing this will still be 2-4x a year], and PCP requires visits every 3 months due to prescription of other controlled substances, not to mention an annual derm visit, OBGYN, etc.
For those of you physically able to work full-time, how do you manage balancing doctors appointments (for me, we’re talking 12+ doctors visits per year) and a full-time work schedule? I was literally fired from a previous job for asking for time off just for the PM&R visits (for EDS), and I’m not sure how to approach this with my next employer. I work in healthcare, and they seem insanely callous about it, which is ironic.
I appreciate any input anyone could provide. Thank you!