So, just an update from my last bit on discontinuing my CPAP. I feel like I’m back to where I was before the CPAP started causing problems, and I’m also up to 30mg of nortriptyline and that’s feeling fine. I also heard back from the sleep clinic today and while the doctor still hasn’t had a chance to go over my sleep study (I guess she’s been out of the office for some reason) the clinician agreed that I should stay off CPAP for now if I’m feeling better without it.
fluffy rambles (Pain)
Rambles that are fluffy, by fluffy
So yeah the last um… two months have seen my fibromyalgia getting worse and worse, and my sleep getting worse and worse, and my pain getting worse and worse, and me just plain feeling like garbage and falling apart and constantly falling asleep throughout the day.
I still haven’t heard back from last week’s in-lab sleep study, but finally I decided enough was enough and two days ago stopped using my CPAP.
Two days ago I thought I might have to cancel all my weekend plans. Today, however, I felt absolutely fantastic, and did those plans and then some. And I still feel fine.
I am pretty sure the CPAP has been doing more harm than good, and I need to make the sleep doctor understand that while one metric (AHI) was going down, it’s only because the more important metric (amount of actual sleep managed) went down moreso.
Like, yeah, I wasn’t suffocating in my sleep, because I wasn’t sleeping.
Anyway. Tomorrow I will probably stream the iPhone battery replacement at, say, 2 PM PDT; if you want to see me possibly destroy the only phone I have which works properly, follow my twitch channel and “ring that bell,” as all the YouTubers say.
And I hope that with this newfound state of feeling pretty okay I’ll be able to start making music and comics (and therefore streaming!) more regularly again.
It’s April 1, and nobody seems to have noticed the little joke I put on my site, or at least didn’t react to it. Which is fine, it was mostly a last-minute commentary on web UX patterns and so on.
Anyway! It’s been a few days since my last post and I’m feeling somewhat better right now, so I’d might as well share what’s changed.
Ever since my diagnosis I was doing so much better, because I was able to practice self-kindness. But over time I’ve been slowly ramping up on doing more stuff, and now I’m back to trying to do all the things, and the amount of time I can do all the things gets shorter each iteration. So now I’m back to being in pain and being frustrated and feeling ineffective at everything.
I’m not sure if the medicine isn’t working after all or if I’m just expecting too much out of it; it’s probably a bit of both.
There are so many things I want to be working on but I’m just too tired to do any of them. I haven’t worked on music in a while – when I was so looking forward to getting back into streaming – and I’m coming up with things to do on Publ faster than I’m actually doing them, and am only really focusing on stuff that directly benefits the day job. And forget about comics, even though I really want to work on Lewi and a Unity Book 3 story.
I’m tired of being tired, and it’s useless to feel useless. I need to remember self-kindness.
So, whatever positive effect I’ve gotten from the nortriptyline isn’t enough to make up for my current baseline pain levels. At least I’m able to get out of bed again (unlike a week ago) but holy moly do I fall into agonizing pain after not doing a whole lot. This weekend I wasn’t even capable of doing my usual 3-to-5 miles of walking a day, and I’m thinking tomorrow I might end up having to take a bus or even a Lyft to work. Very frustrating.
Also, lately I’ve noticed that the extra weight of my iPad in my purse is taking its toll on me. I should probably switch back to using my backpack as my main conveyance; it’s heavier but at least it’s symmetrical and puts the stress on my back rather than my shoulder and neck.
On the plus side, I’ve finally gotten my CPAP working well enough for me. I ended up finding a decent video on how to adjust the nasal pillows and those have turned out to be much more comfortable, given a second chance. The face mask ends up being too disruptive for a bunch of reasons (the slightest movement makes it leak around the sides and I have no way of scratching my nose without hecking the fit up) and I somehow managed to lose the nasal mask (which was nearly as bad as the full mask anyway) so the fact that I’ve gotten the one I’m “supposed” to be using to work reliably and comfortably is nice.
I still feel like it disrupts my sleep somewhat, though. I hope that’s just a matter of something I Need to get used to. Hopefully I’ll eventually start getting reliable deep sleep on it once I’ve fully acclimated.
Anyway. Being up this late and typing a blog post isn’t exactly helping. But I figured an update was in order.
So, Friday I took a day off from my day job to go out to Quincy, WA to visit the Quincy Valley Historical Society and Museum, a farming museum which the AR startup is doing an app for. It was an interesting trip and I learned some stuff, although mostly we were there to guide the filming of greenscreen footage that’s going to be part of the app.
Quincy reminds me a lot of Las Cruces, where I spent a total of 8 years as a college and graduate student, only it’s even smaller and there’s no university.
Anyway, Friday night I didn’t sleep particularly well, then Saturday we drove back and after a brief nap I went to a local Twitch streamer meetup and met a bunch of people. Which was a good time and I made a bunch of contacts, but unfortunately the combination of that with the previous day meant I was already pretty much at my spoons limit.
Then Sunday, because of the dumpster fire that is Daylight Saving Time, all those dirty spoons got thrown into my garbage disposal.
On the nortriptyline front, I’m up to 20mg/day and it’s feeling fine. It hasn’t solved my fibromyalgia forever (and after a day of typing and whatnot I’m still in pain, and my pressure points are still indicative of fibro) but it’s helping me a lot all the same. An unsurprising-but-nice thing is that it’s also vastly reduced my anxiety, which isn’t too surprising since that’s one of the on-label uses of this medication that I’m technically taking off-label. Does that count as a side-effect?
On the CPAP front, I’ve switched back to the nasal mask and it’s actually working pretty okay for me. I think the machine has finally learned to reduce its pressure because I’m a lot more comfortable throughout the night, although I still end up waking up at around 4 AM and taking it off so I can scratch my nose. Still, I’m generally feeling a lot more refreshed in the morning. I just need to get in the habit of putting it back on after I wake up and take care of the itching.
Also my cats have gotten used to it, which is nice.
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.
Only too late did I realize that trying to adjust to a CPAP machine while already adjusting to a brain medication (that has weird effects on sleep) means that I am once again doing things on hard mode. Oops.
So far I’ve had two nights with the CPAP. The first night I didn’t get any real amount of sleep while on it and ended up taking a nap after I “got up” in the morning. The second night I did a bit better when I stopped worrying about paying attention to my breathing, although that’s hard to do.
Probably the weirdest thing about a nasal CPAP mask is that if you open your mouth, the air gets forced out through it and causes a sort of reverse snore. And it feels really weird. So if I need to talk to a cat, for example, things go strange.
Anyway the lack of sleep has made me feel like I’ve gotten a pretty big setback with chronic pain stuff; the day before CPAP, I was feeling pretty good, and over the last two days my major chronic pain has come back all over and in a big way. I’d hold off on the CPAP for now except insurance will only pay for it if I average 4 hours per night over the next two months, and I feel like in the long term CPAP is much more important for my pain stuff than nortriptyline probably is.
If tonight doesn’t go better I’ll probably go without CPAP tomorrow night though, because I have to be in good shape pain-wise on Tuesday (since I have a couple of big tasks at work plus I’m getting a bunch of cavities filled in the afternoon).
I finally got the results of my sleep study. Well, partial results, anyway. In-home tests can find either obstructive or central apnea, and complex apneas appear as obstructive. So, unsurprisingly, it determined that I have obstructive apnea.
Anyway, the good news about this (and it’s all good news!) is that I’ll be getting a CPAP machine, and modern CPAP machines are small, lightweight, self-adjusting (no need for a separate titration!), and also provide ongoing diagnosis. So after two weeks of sleeping with it, I’ll know if I have complex or simple obstructive apnea, and either way the treatment is a CPAP so I don’t really care to split hairs about what the underlying problem is.
So yeah. This explains a lot about my chronic pain issues – and a bunch of other things.
It explains my IBS and anxiety.
It explains my sensory overload.
It explains my chemical sensitivity.
It explains my need to manage my “spoons.”
It explains why drinking alcohol makes me hurt all over.
And it also explains how I can move forward, and I’m actually already on the right track.
Me: My wrists have been chronically sore for over 20 years and it’s basically everything except carpal tunnel syndrome.
Doctor: Maybe it’s arthritis?
Me: No, it doesn’t match the symptoms of arthritis, it’s some sort of chronic inflammation. Maybe there’s a structural issue that makes me extra prone to inflammation.
Doctor: Hmm. Well, let’s get a bunch of tests done, like x-rays and such.
Me: And soft-tissue scans?
Doctor: [orders a bunch of tests, including x-rays, but no soft-tissue scans]
Me: [does them, wonders what the point was]
Tests: [are for arthritis]
Doctor: You don’t have arthritis. But you do have signs of inflammation!
Me: You don’t say.
I was kind of thinking about skipping this last week because the previous few sessions were feeling not very useful for me, but I ended up going anyway and I’m glad that I did.
Also, I’m not sure if I mentioned this before but if you’re in Seattle, these workshops are available to you whether you’re a Kaiser Permanente member or not! There’s more information about that on their living well classes, including online versions (and they also have additional online resources).
Main topics today:
- Working with healthcare providers
- Weight management (ugh, but don’t worry)
- Looking forward
Oops, I forgot to post these earlier while the session was fresh in my mind. I’m going to have to work a lot harder to decipher my handwriting this time around.
This was the 5th week. Next week is the last one. I’m kind of glad to see it ending. Sigh.
Topics covered this week:
- Depression management
- Physical activity
- Mind management
This week’s topics were on healthy eating, communication, and problem solving.
Week 3’s curriculum covered the Moving Easy Program (a simple but effective stretching and minor strength training regimen), pacing and planning, treatment evaluation, and decision making strategies (both for treatment seeking and for other aspects of life).
Last week’s action plan was to do 10 minutes of yoga in the morning, 4 times. I was mostly successful, but only did it 3 times, as today I slept in from having to work late last night (doing a final build of the iOS app for Borealis).
Throughout today’s session we also got some useful affirmations that I can put onto my affirmation board:
- Practice makes progress
- You choose
- Are you choosing pain?
This week was a lot more comprehensive than the first week, and it feels like a lot more happened in about the same amount of time.
The major areas of focus were: problem-solving, dealing with difficult emotions (especially useful for me right now), physical activity, relaxation techniques, and dealing with fatigue.
A few months ago I signed up for the “Living Well with Chronic Pain” workshop that’s put on a few times a year by my HMO. It’s a six-week course that meets once a week. I figure it would be helpful to share the key insights from each session here, since I know a lot of my followers have similar issues and would like to benefit as well.
The textbook for the workshop is Living a Healthy Life with Chronic Pain (affiliate link). It also comes with a pain-management exercise audiobook on CD.
Hi, you may have seen some of my pained ramblings about my chronic pain and have decided to offer some advice. Maybe I was venting on social media, or perhaps I wrote something on a forum a few days/months/years ago that you want to help with. While I do appreciate the sentiment, there are a few things you should consider before messaging me with your solutions to my problems!
First of all, I have been dealing with these problems since 1996. My wrist problems are old enough to drink. Statistically-speaking, I have probably been working on this since before you were programming, or using computers, or maybe even before you were born.
Second, I have written extensively about wrist problems and the treatments thereof. For example, I’ve written about my ergonomic setup, my self-care regimen, and about many of the problems with trying to get help. And that’s just what’s on my new site – I had quite a bit more on my old blog before I tore it down in a fit of pique a few months ago.
Perhaps you want to let me know about that Python programmer who used voice dictation, or that game programmer who used voice dictation and eye tracking, or that accessibility software that lets people type without their fingers. I am aware of them! They also aren’t solutions which help me with my problems; among what I do, writing code is actually not a very large component of it, and my approach to making things requires much more iteration and (so to speak) hands-on processes which aren’t easy to capture in voice dictation. Also, until there’s software that allows me to draw, or control a piano, guitar, or multitrack DAW software with my voice – and is also smart enough to rule out background noises and conversations with my cats – voice software at its best can only scratch the surface of the assistance I need. (Gaze tracking isn’t an answer either.)
And yes, I am also aware of software that can convert humming into notation! Logic actually comes with some built in. That stuff I actually do use somewhat, but its utility is still limited and, again, only scratches the surface of what’s necessary for music production. It won’t twiddle the knobs or set up my LFOs or even do basic effect routing for me. And I still have to clean all the notes up afterward anyway.
I also spend a significant amount of time helping other people with their code and performing code reviews and sharing best practices; when I am trying to help someone else who doesn’t know how to program very well, I can’t simply talk to them at a high level about how they should be doing it, since if they were on that level I probably wouldn’t be assisting them in the first place.
Perhaps you just want to share your story about what worked for you/your spouse/some random person you met on the bus. I’m very glad that it worked for you/your spouse/some random person you met on the bus! But it’s probably stuff I’ve heard before or tried already. And explaining that repeatedly doesn’t exactly help with my wrists either.
Also, I know this reponse may seem a bit grumpy; after all, you were only trying to help. It is difficult for me to remain civil, cheerful, and patient when I am constantly at a 7 or 8 on the Mankoski pain scale, which is when I am most likely to be venting about these problems in the first place.
So, again, thank you for wanting to share your advice, but please be aware of the greater context first.
My current wrist care regimen, which is… well, slowly helping me to not be in quite so much pain (more slowly than I’d like):
- Using Time Out with the following breaks set up (in decreasing priority order):
- Get to bed: break for 4 minutes every 19 minutes, between 1 AM and 6 AM
- Normal: break for 3 minutes every 20 minutes, all day long; only allow 3 1-minute postponements per day, and show the postpone count
- Micro: break for 10 seconds every 4 minutes
- Exercise: 5 minutes every hour, all day long; only allow 3 5-minute postponements per day, and show the postpone count. Randomly selects one of a few different wrist- and core-strength exercises for me to do.
- During a normal or get to bed break, do one of the following:
- Clean something
- Do some dishes
- Spin a powerball (affiliate link)
- Squish some putty
- Don’t worry about not getting stuff done
- Type exclusively using a keyboard.io while (sometimes) wearing padded wrist braces (affiliate link)
- Every time I walk through my office door, do some chin-ups (affiliate link)
- Actually drink plenty of water and do stretches
- Remember that it isn’t a race
(For Windows and Linux users, the closest equivalent to Time Out is Workrave although it has plenty of problems.)