r/cfsme

Has anyone here had PEM start mainly as worsening headaches before the more classic fatigue/crash symptoms?

I’ve been dealing with issues for about a year after a viral illness. I’ve seen multiple doctors and still don’t have a diagnosis. Early on I had fatigue and headaches, but I’ve still been able to work, drive, and function day to day. I stopped intense workouts though because exertion started making me feel worse.

One thing that confuses me is that I don’t feel exhausted all the time anymore. I actually feel normal energy-wise, but headaches are becoming the dominant symptom. If I overexert myself physically, the headaches can get really bad afterward. But if I rest for a day, I often feel noticeably better the next day. Some doctors have said I have migraine or tension headaches…

I also tried LDN. Interestingly it reduced the headaches, but it gave me this weird malaise/flu-like “coming down with something” feeling, so I stopped it.

For people who eventually realized they had PEM or ME, was it obvious from the beginning? Like full-body crashes where you couldn’t do anything? Or did it start more subtly with one symptom (headaches, dizziness, feeling off, etc.) getting worse after exertion before the more classic PEM symptoms showed up?

Just trying to understand whether anyone else’s experience started this way and what the patterns or red flags were/are (something the FAQ doesn’t really spell out for beginning symptoms)

Thanks

Hey. So ive only this week been officially diagnosed ME/CFS by my gp, but ive been lurking since this was a "probable diagnosis" mentioned about a month ago.

Ive done what reading and research i can. Im not sure how to categorise as im housebound but not fully bedbound.

Since becoming ill my ex has been helping out with household chores, the children and general heavy duty jobs such as groceries etc. Hes practically moved in and this is causing me unremarkable stress somedays (hence the ex part). He will be moving back to his own place within the coming weeks.

Does anyone have advice or practical tips on being a single parent with this illness? My children are teens, but I dont want them becoming my carers if I can help that. I can move around independently within my own home, outside i use a wheelchair.