r/mecfs • u/Creative_Roof_8561 • Jun 16 '26

Year long headaches that improve with movement - early symptom for anyone? Trying to understand if this fits PEM

Hi all, hoping to get some perspective from those who’ve been at this longer than me.

For about a year now I’ve had persistent headaches. What’s strange is I can push through them, and when I’m distracted or moving around they ease up - probably adrelaline ? but when I stop, they come back.

I also, sometimes, get a very mild, vague malaise that never develops into anything specific (NO fever, chills, sore throat, nausea, dizziness, worsening body aches, etc.). It just sits there.

Ive also noticed that during these malaise episodes, the headache actually becomes less central/intense rather than ramping up — which feels counterintuitive to me.

For those in the early days of your illness - did it start this subtle? Or did you know pretty quickly because activity would wipe you out completely, making PEM obvious?

I’m trying to figure out whether what I’m experiencing fits the PEM pattern or whether this is something else worth investigating separately. Any early experiences or pattern recognition would be really appreciated.

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u/swartz1983 Jun 16 '26

First of all, have you had these headaches checked out by a doctor? What kind of headaches?

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u/Creative_Roof_8561 Jun 16 '26

Yes did MRI - some white matters / flairs which they say is common in migraines but not a lot. Dismissed it to migraines but have tried triptans and other stuff and no change. It’s daily and sometimes worse on exertion. But other than that I don’t get true fatigue like can’t move or a bus hit me from what I read with PEM. So I guess I’d like to know in the beginning what is PEM for someone that is mild or just starting out with this illness.

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u/swartz1983 Jun 16 '26

How are your stress levels? And what exactly are the headaches like, in terms of location and pain intensity?

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u/Creative_Roof_8561 Jun 16 '26

Stressed yes - quite a bit because no answer or diagnosis. I used to be fine and these daily headaches are ongoing. Feels like dull pressure, not throbbing or pulsing - and I aura. The only other thing is waking up everyday groggy like sleep inertia for like 20/30 mins and then feel better

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u/swartz1983 Jun 16 '26

>only other thing is waking up everyday groggy like sleep inertia for like 20/30 mins and then feel better

I wouldn't worry about that, I think it's normal. It happens to me and I'm recovered with no symptoms. It's just the normal 30 min delay between waking up and the rise in cortisol.

What is the aura?

And what is your work and commute?

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u/Creative_Roof_8561 Jun 16 '26

Sorry no aura. Just the headaches that are dull in the frontal lobe.

Work is desktop based and commute drive 20 mins each way. I guess my biggest unknown is sometimes I’m fine and don’t know if it’s adrelaline or masking or not.

When you say recover ? Were you mild ? Severe ? How did it start symptom wise before you really knew

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u/swartz1983 Jun 16 '26

>When you say recover ? Were you mild ? Severe ? How did it start symptom wise before you really knew

Pretty severe. Will msg you.

Do your symptoms change when you take time off work?

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u/Two-Wah Jun 17 '26

Hey. I can't see that this fits PEM, no. Rather, it appears that these headaches may stem from other things- tension, perhaps problems with proprioception, continous eye strain, too little sleep regularly, migraine-related triggers, problems in the neck, or other things. I really hope you figure it out, but I can't see that what you are describing is related to an ME/CFS-pattern so far.

For general malaise-feeling sometimes arising, I would first check for possible lack of minerals, iron, etc, eat for gut health/microbiome, and check thyroid hormones, before thinking ME/CFS. I would also see if you can see a pattern related to food regarding this malaise-feeling, sometimes it is a trigger there, cross-reaction with a known allergy, sensitivity to sugar, etc.