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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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How bad is it to crash?

SnappingTurtle

Senior Member
Messages
275
Location
GA, USA
how might you deal with PEM stemming from non aerobic activities?.......(lying down thinking or reading for instance)
For me, mental, social or physical over-exertion manifests with the same PEM symptoms. It has been trickier to watch my mental exertions and I feel this has been the cause of my recent crashes. I am hoping switching over to time-based pacing will address this.

When I get over this crash, I intend to mark my time in 8 minute increments, no matter what the activity. If reading for example, I will stop at 8 min mark, rest 8 mins, then resume another 8 mins and alternating with 8 min rest periods. I will do this for 3 days for my routine/daily activities, and see if I do not trigger PEM. Naturally, this means I cannot use this method to engage in group activities like watching a movie, or do time sensitive things like stove cooking.

I plan on using a free Timer app on my Garmin VivoActive 4s to mark the activity time and rest time. It will vibrate when it is time to switch. Otherwise, I was going to use an app on my smartphone. But the app on the wrist watch is more convenient. It also allows me to keep an eye on my HR because I also suffer from orthostatic intolerance symptoms, which can also trigger my PEM.
 
Messages
43
This gives me some food for thought. I take a moderate dose of adrafinil (prodrug of modafinil) because I find it counteracts the all-day zonk-out that I get from the mirtazapine/diphenhydramine I take in order to sleep. It works well for that purpose while not seeming to counteract the fatigue as far as I can tell. However I wonder if it contributes to my tendency not to pace properly when not fully in a crash.
I am looking into buying some adrafinil, do you find it does help?
 
Messages
52
Location
UK
I am looking into buying some adrafinil, do you find it does help?
Honestly I'm not sure I can recommend it specifically for ME/CFS.
One problem with it is the extremely long half-life which can make sleeping even more difficult.
Typical dose range afaik is 600mg-1200mg, and I generally stick to just 600 - that is quite subtle, but does the job of countering the effects of mirtazapine. I can't say it noticeably improves ME symptoms though.
I've tried the higher dose and while that may have more of a helpful effect on symptoms, I found it made me unpleasantly 'wired'.
 
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