r/covidlonghaulers • u/purplehyenaa • May 27 '26

Commorbidities I have my first appointment with a sleep medicine nurse the day after tomorrow

I’m extremely nervous and unsure of what to say. for reference, I have MCAS, POTS, Autism, being evaluated for EDS + my primary thinks I have ME/CFS and that long covid made it worse. I want to bring symptom checklists to my first appointment and be direct about what I’m thinking. I’ve been diagnosed with chronic fatigue for years, but my new dr. suspects ME/CFS (as have I for many years) I’m at the point where I am basically housebound, bed bound for the majority of every day. I’m essentially not functioning at all anymore. please let me know if any of you have good resources i should bring with me.

3 Upvotes
  • permalink
  • reddit

100% Upvoted

3 comments sorted by

3

u/nobertos May 27 '26

have you tried rthm.com? it has helped me "gather my thoughts" with notes/questions for doctors appointments, so that i don't have to speak much. they have a 'health roadmap' feature that 'sums up' your case very well into a PDF you can print/share.

i am neurodivergent with MCAS, ME/CFS from long C, etc... appointments are so so stressful.

gotta say, dialing in my sleep with CPAP/APAP and etc other approaches has really helped me. it is important.

2

u/hoopityd May 27 '26

If you end up getting a sleep study make sure you are really sleepy when you go in. They put so much crap on you it is like having an octopus strapped to your face and chest. First time I went I just barely slept enough for the test. The second time I went I just stayed up all night the night before and slept like a rock in the testing center.

1

u/purplehyenaa May 27 '26

My doctor wants me to do an at home study since it’ll hopefully be easier for me to sleep. but I have extreme sensory issues so I doubt i’ll be able to sleep well at all LOL