This is an automated archive made by the Lemmit Bot.

The original was posted on /r/cfs by /u/-BeautifulxDisaster- on 2024-11-09 21:55:41+00:00.

Multiple pinned articles from links I’ve clicked on in this sub have said that, yes, PEM can be delayed, and one of them even gave my specific timeframe of 72 hours. Yep, a whole 72 hrs just like clockwork. So whether or not my severe disorientation leading to me being bedbound for 3-7 days practically is related to PEM or not, I know for a fact that whatever symptoms I experience a few days after I exercise are no doubt related to the exercise. I know my body and I’ve been through it a million times to know what it’s caused by. The thing is, my primary M.D. said it (PEM) usually occurs in the middle of exercise. The muscles start to fatigue, etc. (Not even shortly after the exercise, it’s during according to him) therefore , he was confident that I do not suffer from PEM.

He referred me to a neurologist, and I have a brain/brainstem MRI with & without contrast coming up to rule out “big things.”

Honest question: What would I be experiencing then? What should I expect or say to neurologist about this exercise related disorientation with delayed onset? It’s also triggered by direct sunlight/glare/reflection (even just a flash of it), heat, exercise and stress. Those are all instant triggers. I have gathered from a handful of you to not mention CFS/PEM at all, just my symptoms? Primary suggested Atypical migraines (I never ever get headaches. Once in a blue moon) and much less likely but not ruling it out yet, Absence/Petit Mal seizures.

To whom it may concern, here’s 2 examples of what has happened to me before in regards to this “confusion”

I’ve been asked a yes or no question before. All I could do was stare off past the person for a few seconds as I struggled to bring my mind back to the words the person was saying. Then, in my head, I struggled to piece each of the words together to form the question. Almost like the words were foreign and of course that led to questions like “Hello?!” “Did you hear me?”

Another example: Carrying a hair brush back to the bathroom from the kitchen, I had to stop mid-walk because I forgot what I was doing. To remind myself, I look at my hand with the hair brush, but I’m unable to make out what the brush even is in the first place (again, it looks foreign or some crap) let alone where it goes or what I was doing.