So I’ve been on nortriptylene for nearly two weeks now, and so far it’s feeling pretty promising. I’m still at the 10mg dose (I’m supposed to increase to 20 in a few days) and while it hasn’t completely solved my fibromyalgia so far (not that I’d expect it to), it’s definitely helped me out a lot.
In particular, while I still feel pain after a full day of work, it just feels like something that’s present and that tells me that it’s time to take a break from things, rather than putting me into extreme severe agony.
Basically I suspect this is what pain normally feels like to people who don’t have this disability!
I still have some level of fatigue in the morning (and much more later in the day) and I’m still needing to manage my spoons – that’s not something that is likely to ever go away – but even this early and at this low of a dose I feel like I’m heading in the right direction.
As far as the CPAP goes, that’s been a bit more rough. When I got the machine I was given three sizes of pillows and a nasal mask (all compatible with the same headgear) and none of them really worked all that well; no matter which size I chose and how I adjusted it, I always felt like my breathing was restricted, and I’d get woken up every time I opened my mouth, causing air to escape out through my throat in a very uncomfortable way. I tried adjusting all the settings I could but nothing really helped.
It also made my sleep way worse; the nights that I kept it on all night I woke up incredibly tired, fatigued, and in a huge amount of pain the next day, and my bed sensor showed my sleep as being incredibly disrupted as well. For the last few nights I’ve only worn the CPAP until it woke me up the first time and just took it off for the rest of the night – not what I’m “supposed” to do, but at least my sleep wasn’t completely destroyed by it.
So, I ended up just ordering a face mask – one that’s also compatible with the headgear – and its matching strap. The mask arrived two days ago and the strap arrived today, and I’ve done a test fitting of them and it’s already feeling a lot better and much more likely to be successful. So, hopefully tonight I’ll start to finally get some better sleep.
I’m a bit annoyed that the training session in Redmond didn’t actually go through any effort to do a proper fitting. The person running it just insisted that the nasal-only approach would be the best and that if it didn’t work I should try using a chin strap to keep my mouth closed and all sorts of other annoying hacks to work around the problem (occasionally breathing through my mouth). Also, the whole insurance-paying-for-things process is really annoying, and it didn’t sound like I’d be able to get a different mask covered for another 6 months anyway, which is why I just ended up paying out-of-pocket on Amazon.
I also kind of figured that this way saved me money; the provider isn’t very up-front about how much things cost but my insurance covers 80% of it (when it covers anything) – and the provider charges a lot of markup (for example, MSRP of the CPAP machine is $800 but apparently their price to my insurance is closer to $2000!). Obviously they have their own costs to cover too, but that seems like rather a lot of overhead. And they were proud of how they send masks using same-day FedEx for all shipping which is, of course, expensive, and is also a hassle to deal with for a bunch of reasons (they love giving me the runaround when it comes to signature-required delivery, for example).
It certainly saved me a lot of hassle, anyway. And $50 feels kind of worth it for that.
In any case, I’m hoping that tonight I actually get a good night’s sleep! I’ve been expecting the CPAP to be much more useful in my overall health than the nortriptylene, and having gotten a taste of how much better things can be, I want so much more.