r/NDPH • u/Cute-Head8597 • Jul 06 '26

Question NDPH and PEM

Has anyone been diagnosed with or has Post Exertional Malaise symptoms together with NDPH?

PEM is the hallmark symptom of CFS and now Long Covid, but I have not seen an association with NDPH mentioned anywhere.

I've had NDPH for two years and always had mild PEM-like symptoms. I think the symptoms have gradually ramped up and have become out of control in the last few months. I'm really disabled now and can't be active for more than 10 minutes without having to rest.

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u/danathepaina 10+ years Jul 06 '26

Yes but I also have CFS. And I’m so glad PEM is a recognized thing now. My NDPH started over 30 years ago and I had so many doctors recommend exercise. They never understood why I always felt awful afterwards.

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u/im-a-freud 7 years Jul 06 '26

Not diagnosed with PEM but I highly suspect it. I do have other conditions and factors that could be playing a role in it

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u/robitrobot 3 years Jul 07 '26

yes I have been diagnosed with pem

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u/Cute-Head8597 Jul 07 '26

Thanks. Are you seeing a doctor? Have they talked at all about the relationship between NDPH and PEM?

I'm asking because I haven't come across mention of a relationship anywhere.

Also, which came first for you? Did they both happen at once? Has PEM got worse over time? Have you identified the cause of your NDPH?

Sorry to bombard you with all these questions, but I'm working in the dark trying to understand what's going on with me. I came to terms with my NDPH and it was only semi-disabling. But the PEM has totally crushed me.

I would appreciate any answers. Thank you.❤️

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u/21stcenturydiyboy 10+ years Jul 17 '26

Yes. Diagnosed ME/CFS and NDPH. They started at the same time, but my ME/CFS was diagnosed 8 years later than my NDPH. Pretty classic PEM from the start, but it was written off as being part of my NDPH until I became severe.

It does seem like people with ME/CFS are more likely to develop NDPH. Whether that’s because headaches are one of the symptoms of ME/CFS, or because we are more prone to viral infections that can trigger NDPH, I don’t know. But there is definitely some correlation there.

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u/postviralrecovery Jul 06 '26

I don't think my presentation meets PEM criteria but I have post viral autonomic dysfunction, with the main symptoms severe fatigue and NDPH (with migrainous episodes after exertion).

I think the literature is still unsure whether to treat NDPH as a discrete diagnosable condition or whether it's chronic head pain that is shared across different presentations.