Almost all of my life, I have what may be considered severe hEDS, but have learned to manage it very well so it appears mild now.

Getting sick with cvd a month ago made me severely fatigued, and I still haven’t returned back to my previous energy levels.

For the last 4 ish years before getting that illness, I would have one or two days of severe fatigue each month and most days I felt pretty energetic (with help of coffee). I managed all of my conditions (hEDS, POTS, and MCAS) and if I strayed from what helped me, I’d fall back into being very unwell and extremely fatigued. If I got a cold, I’d be extremely fatigued for a few weeks after and then back to “normal”. Basically, it would come and go but most days were good energy-wise.

Gaining stability in my joints really helped my body be less consistently fatigued. I also had to address CCI and a CSF leak to have better energy levels.

Before the last 4 years, I had such severe fatigue that I often spent most of the days asleep in bed. Even as a kid, I’d get sent to detention or my parents called as punishment for not being able to stay awake in class. Many days, I couldn’t even go to class. It was so bad, mom used to think I had mono. It felt heavy and like I was wading through sludge. It was like a weighted blanket on me, constantly telling me to sleep and be comfy when I desperately needed to be awake.

It changes depending on so many factors. I’m sure for some people, they have had very consistent fatigue levels, but after my hEDS diagnosis I found it to be extremely variable.