Treatment progress

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.

Nortriptylene and CPAP progress

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.

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CPAP and Nortiptyline

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).

Day 2 of Nortriptylene

I took my first dose Monday night, and I had some incredibly intense dreams, and I was very aware that I was dreaming but kept on switching between like six different parallel threads, and was also very aware of my various apnea events. I was sort of awake and asleep at the same time and wasn’t really sure what was a dream and what was reality.

All day Tuesday I was drowsy and in a fog, and did absolutely nothing with my day except basic things around my home. Fortunately, it was also a day off because of the snowpocalypse.

I was kind of worried that my second day on it would be much the same, but aside from feeling vaguely like I was stoned all morning, I made it to work just fine (although I was in sort of a zombie mode on my way there), and then during the day I actually had a fairly productive day. In particular, I finally looked into modernizing the lab’s website (which was originally running Movable Type, just like this one), and realized that a quick-ish path forward would be to use Publ. However, the lab’s site had a lot more hackiness with templates and layout than my own one did, and I quickly came to the conclusion that the best path forward would be to finally implement better support for pure-HTML entries – so I did.

So far I’m not finding any major reduction in my pain levels (and if anything I’m noticing the pain I do have much more acutely) but I mean I’m only at the starting taper dose.

I’m getting a couple of cavities filled tomorrow. I’m not looking forward to finding out how that interacts with this current mental state.

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Various life/status/etc. updates

So, Seattle’s been basically shut down for most of the past, oh, week and change, thanks to the snow. People did overreact to the news of the snow (did they really need to stock up with a month’s worth of bread and milk?) but the various shutdowns do otherwise make sense; Seattle is very hilly and when it snows it gets icy and slippery. And some caution does make sense for having a nonperishable food supply, since power outages are a thing. The really remarkable thing is just how much snow we’ve gotten this year; most years we’ll get none or just a light dusting, or maybe we’ll get one or two snow days when it gets especially bad.

But anyway. Despite the shutdowns, my doctor’s office was still open today (thankfully, although unsurprisingly as they have an urgent care clinic so they make plans to stay open as much as possible). So I was able to do my appointment where I finally got to deal with my various medications for fibromyalgia (as well as finally getting a new prescription of estradiol).

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Sleep study results

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.

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I have fibromyalgia.

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.

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Sleep diagnosis

So, after many years of being aware of a problem with my sleep, I finally saw a sleep specialist. It was good to learn that whatever is going on can be figured out and treated.

What’s really frustrating is what led to me taking this long, and how much I’ve been shamed for having this disorder and how I’m yet still being shamed for having not taken care of it sooner.

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Reprogramming my sleep cycle

So because I’m starting the new job next week I figured it was time to get myself back on a compatible sleep schedule. In the past I’ve always done this by taking a dose of melatonin before bed to ease myself into going to bed early, and then try to continue to go to bed at a regular time every night. That usually works for about three days.

What I’m doing this time is attacking it from the other end: I have set my smart bed and Apple Watch to both wake me up at 8:00 every morning, both only on weekdays. The smart bed’s alarm comes through my phone (which charges on my nightstand) and happens during a shallow sleep phase during the half hour or so before the actual alarm time. This usually wakes me up effectively.

The Apple Watch charger, however, lives on the bookshelf across the room, and the Nightstand Mode alarm turns out to be the right combination of pleasant enough to not be jarring and annoying enough to get me up to turn it off.

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Notes from the pain management workshop, week 6 ~THE FINAL~

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
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Notes from the pain management workshop, week 5

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:

  • Medications
  • Depression management
  • Physical activity
  • Mind management
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Notes from the pain management workshop, week 3

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?
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Notes from the pain management workshop, week 2

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.

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Notes from the pain management workshop, week 1

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.

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Wrist wrest

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)
    • Stretches
    • 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.)

Smart phones, smart watches, what’s next, a smart bed?

Lately my sleep has been pretty much garbage, and I probably need a sleep study. But sleep studies are expensive and a lot of hassle to maybe find out nothing’s actually wrong, so in the meantime I got a sleep tracker kit.

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