Upper Airway Resistance Syndrome (UARS): a common underlying cause for all "chronic complex illnesses"? (ME/CFS, fibro, GWI, etc.)

[nataliezzz]

It's UARS! Okay what's the treatment then? Surely a CPAP/BIPAP/whateverPAP? No? Oh.

Hi, I just wanted to say I definitely think that CPAP/BiPAP is the mainstay treatment for UARS, just that it does not appear to be a cure for most UARS patients. If you are sleeping nightly (through most of the night) with PAP that is properly titrated to resolve/significantly reduce inspiratory flow limitation for a few weeks and you are not feeling better, then you likely do not have UARS. However, "properly titrated..." almost never happens (supposedly the auto-titrating setting algorithms are targeted at flow limitation in addition to apneas/hypopneas, but from my time on UARS forums I'm not convinced that they actually do a good job with this). This is something that patients will just have to verify themselves for the moment - see my advice (Bluesky thread link) on how to do this.

In fact, spending a few weeks sleeping with properly titrated PAP is (IMO) the only way to know whether you actually have UARS/OSAS (there are other treatment options like a mandibular advancement device but this often doesn't fully resolve sleep-disordered breathing/inspiratory flow limitation and you would need to do a follow-up sleep study wearing it to confirm if it does). You can do a sleep study and get a diagnosis of OSA/UARS based on your AHI or RDI, but these factors don't actually correlate with symptoms/are not the cause of symptoms (at least until you get into the more severe OSA range), so the only way to confirm a diagnosis (IMO) is to try treating the sleep-disordered breathing and see if your symptoms improve.

Some people just don't tolerate PAP though, unfortunately. I didn't until I had a nasomaxillary/palate expansion procedure (I'm guessing just because my nasal airways were so narrow):

I was unable to tolerate CPAP or BiPAP prior to getting a nasomaxillary expansion surgery (EASE with Dr. Kasey Li) - I could fall asleep with it but could never stay asleep with it for more than 2-3 hours (I would wake up and have difficulty falling back asleep and end up just taking it off); immediately following the surgery I was able to sleep through the night on BiPAP. There was only ~1mm of expansion from the surgery itself; the rest of the expansion took place slowly over the course of ~9 months (photos of pre-surgery and end of expansion below - now I have braces to close the gaps between my teeth and correct the changes to my bite). I had a very narrow/high-arched palate, which corresponds to narrow nasal airways (since the roof of your mouth is the floor of your nose).