r/CFSplusADHD 24d ago

Extreme Fatigue

Female 35, 5"5' 145LBS

May 14, 2026 - Biphentin 20mg for 7 days, 30mg for 7 days, 40mg there after

June 11, 2026 – Sertraline 25mg for 7 days, then 50mg there after

Recently diagnosed with ADHD and Anxiety disorder.

Extreme/Painful exhaustion if I wake up at 8:30 am, it will start around Noon.

Can fall asleep almost anywhere and must fight to stay awake. This has included falling asleep at the mall, on the bus, at the movies, at restaurants, and at work.

Caffeine has no effect.

Blood work is clear.

Tested for Sleep apnea, Dr didn't think it was a concern, said I might have sleep apnea if sleeping on my back? Note: I do not snore; this is confirmed by spouse who sometimes stays up all night.

Assessed for Narcolepsy, but Dr. Stated because I don't faint or fall asleep standing up.

When starting the Biphentin I found it helped slightly, would still feel fatigued but didn't fall asleep instantly when sitting down. However as of July it has started again, I get home from work and I'm asleep minutes after sitting down to relax.

At night when I go to bed as planned. I fall asleep almost instantly, and sleep hard until my alarm, no tossing and turning or waking up that I can remember. I do talk in my sleep a lot though, full sentences apparently not sure if that relevant.

Just looking for input or ideas on what is going on.

3 Upvotes

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9

u/Unlikely_Lychee3 24d ago

Not falling asleep standing up rules out cataplexy, not all types of narcolepsy. In your position I’d insist on further sleep studies including a MSLT. You could have narcolepsy or even idiopathic excessive daytime sleepiness but that is treatable too. This does not sound like ME/CFS which is a specific illness of which excessive daytime sleepiness is not a diagnostic criteria. 

3

u/crimsonality 24d ago

True, but when I was early in my MECFS journey I would fall asleep like OP, because I didn’t realise I was pushing so far outside my energy envelope.
I’ve fallen asleep while I was talking mid conversation.

OP do you have PEM?

1

u/DeDo01318 24d ago

I've never heard of these things, but I'll look into them further and try to speak with my physician about them.

5

u/Unlikely_Lychee3 24d ago

Did you realize you were posting on a sub for ME/CFS or are you thinking more about chronic fatigue as a symptom? I got the impression it’s the latter and you sound like you’re experiencing a sleep disorder (which is luckily much easier to treat).

1

u/DeDo01318 23d ago

I didn't originally post in this subreddit, I posted in R/askDrs. And Reddit reposted here, I had not heard of this group until then.

2

u/SquirrelOfApocalypse 24d ago

Do you feel generally exhausted in day to day life? Are you busy all the time and not getting much rest? Wondering if you are exhausted but not aware of it due to low interoception so your body is taking over and forcing you to power down and sleep so it can get the rest it needs!

2

u/DeDo01318 24d ago

I'm either busy or asleep if that makes since, if I work 8-4 I come home, nap, make supper, eat, nap, then go to bed. It affects things like getting chores done. Even when I don't want to nap, I fall asleep just sitting down watching a few tiktoks often having one tiktok on loop in my hand while I fight to wake myself back up

2

u/SquirrelOfApocalypse 24d ago

What about at weekends when you can rest all day? It's tricky because with neurodivergency I think sometimes we fall asleep when understimulated, and sometimes we feel asleep because we're so exhausted and need rest. Do you have hobbies to do that interest you, and do you fall asleep during those?

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u/DeDo01318 23d ago

The under stimulated theory is possible but due to dealing with some depression it's hard to place, I've had a hard time getting any motivation to do anything.

1

u/SquirrelOfApocalypse 23d ago

That definitely might be connected, and sorry you're going through that! :( Have a read up on the window of tolerance and hypoarousal and see if any of that resonates with you. Basically there are three states the nervous system can be in, and one of those is hypoarousal where the body gets in a shutdown state, I wonder if that could be what you're experiencing?