That’s the crux. He only sleeps like that when he uses up his energy reserves otherwise he is bedridden with never ending fatigue. He was in the prime of his life. Excited about being in college. Pursuing a chemistry degree was his dream. He was happy to be away on campus. 5 weeks in he was so tired he didn’t think he could finish up the semester. He came home for Fall break, rested and said he could go back. 1 week later he crashed so badly he could not get out of bed for 4 days. Slept for 14 to 16 hrs. Had to medically withdraw because his fatigue was so bad he couldn’t get out of bed. He has Crohn’s disease, cmv, EBV and possible lymes. I think there is more to his story than depression. I’m all for treating depression but we tried that for a year with no major improvement with his fatigue. In fact his fatigue got worse when he tried to do their suggested therapy. So idk, 🤷♀️ we are drowning in uncertainty here and no one we have seen has been able to get him better. The only thing that helped minutely was the valacyclovir. That brought him to be able to speak audibly. Before that he couldn’t even talk he was so exhausted. I’ve been open to changing meds but his treating doctor does not want to change them at this time.
Such a hard situation.
I'm so sorry that you are dealing with this. Poor kid.
The uncertainty sure makes it even worse not knowing what to do.
I thought he was 15-17 age which is why I suggested the depression as that's a common age for the sleep disruption of depression.
If he is college age and based on what you describe here is going to be my best guess.
My guess is that he picked up a virus, got sick, had post virus fatigue, had shit tons of cytokines floating around his system, his body reacted to that which created the additional fatigue. My father's doctor described this in laymen's terms as "being allergic to your own immune system." I'm pretty sure I inherited that as well.
The tricky part is that cytokines also cause all kinds of chemicals that cause a blend of physical and psychological reactions in people that don't normally have/feel/experience these symptoms.
I remember feeling that after my big virus in Dec 2019. Not during but after the actual virus was probably gone. I was so fatigued like never before. For months. And on top of that I got very weird anxiety.
For example, I was trying to get better so I made sure to drink A LOT Of water. And that got me weirdly paranoid that "Uh oh, drinking too much water at once can kill you" -- so I ate some salt --- and then I got scared I ate the salt ---. It was all so strange. But that wasn't the strangest part because even though that was extreme, health anxiety thoughts aren't new to me. What was completely new to me was depression.
I have never felt depressed in my life --- as a health anxiety person I'm always on high alert NOT to die -- but I had feelings I hadn't ever, ever experienced (and I'm not young.) I can't really remember it now or what it felt like then and have never experienced it again. Anyway, point being -- not about depression -- but about how the cytokines cause all kinds of havoc in sensitive bodies.
I subsequently did a lot of reading of medical journals, etc., on this topic.
There are ways to break the cycle. How long ago did this all start for him?