fluffy rambles (Fibromyalgia)

Not that anyone would ever want to be in chronic pain or anything, but holy fuck am I tired of being in it.

It’s time I sling the baskets off this overburdened horse
Sink my toes into the ground and set a different course
Cause if I were here and you were there
I’d meet you in between
And not until my dying day, confess what I have seen.

— Phish, The Horse

I’m finally doing something I should have done at least a decade ago: I am no longer going to try to be a software engineer professionally. I’m not sure what’s coming next, but hopefully it’ll be a much better life for me.

So, I was worried about having “long COVID” and/or protracted amounts of fatigue after this, and, unfortunately, that’s come to pass. I had pretty bad fatigue leading up to the respiratory symptoms, but in this week since the worst of the cough subsided, it’s been even worse. I’m constantly tired and fatigued and I have a bad headache that just won’t go away, and I’m barely able to do things that I need to do, much less the things I want to do.

This past weekend I did end up assembling the drum kit like I said I would, and that took a lot out of me. I played the kit for a few minutes and it was more than I could really handle. Then I decided to work on some other music, and I could barely press down on the strings on my bass, and had to stop after just a couple minutes. I tried playing guitar instead, and that was just as bad.

And the next day my body felt like I’d run a marathon or something.

Ketamine therapy was very interesting for me. It helped me with some things, didn’t help with others.

Yesterday’s infusion left me feeling a lot more wobbly than usual today, but it was also a huge increase in dose. I ended up going to Taco Bell for lunch since it’s the only place within walking distance (EDIT: not actually the only place in walking distance but the quickest and easiest option for food near my home that I don’t have to prepare myself), and I decided to get a lunch combo, and in my haze I decided to make my drink Mountain Dew Baja Blast, which is rather high in caffeine.

So, on the minus side, I now have the strongest caffeine headache I’ve had in about 10 years when I first had to go cold turkey on it.

But on the plus side it’s just a caffeine headache, and not a panic attack!

I think this is evidence that the ketamine treatments are working, and maybe this means I’ll be able to go back on Adderall when this is all over with.

I don’t know if this has done anything for my chronic pain just yet, but those things are so interrelated anyway. So this is pretty promising in any case.

Still on disability leave, and still in considerable pain. I’m trying not to work too hard on things, but it’s hard not to do things.

For example, I worked on a song with my friends Ken and Huan-Hua for this week’s Song Fight!; we entered the “We Did Everything We Could” fight under the band name Richard Donner Party. It was a fun song to make. Fortunately I didn’t have to even so much as look at a guitar. Most of my work was vocals, light keyboard work, and editing.

Over the past couple weeks my pain has been flaring up again, driven especially by work stress. A few days ago I hit a breaking point and realized that this is something I need to actually take short-term disability leave for.

Fortunately, Moz has an extremely generous disability leave program, and management would much rather someone take it if necessary. So, for now I’m off from work until August, and we’ll see where things go from there.

Last night I came across a pop-science video about the link between ADHD and sleep disruptions, and it raised an interesting point: many of the ADHD symptoms are also symptoms of sleep deprivation, and the sleep disruption aspects of ADHD might actually be the underlying cause of many of them.

I’ve always had great difficulty with sleep, with trouble falling asleep at night but then being incredibly fatigued during the day. And I can’t help but wonder how many of my other issues are just plain due to crappy sleep. Maybe my chronic pain isn’t because of an underlying neurological cause, but is because I’m not properly sleeping and healing at night?

I’ve had three sleep studies at this point. The first in-home study vaguely diagnosed me with obstructive apnea, and is why I got a CPAP machine. The CPAP machine didn’t help at all, so a second study to rule out narcolepsy happened. Then the third one verified that CPAP doesn’t actually make a difference for me.

Anyway, one of the things mentioned in the video is that there’s been some success with treating some forms of childhood ADHD with time-release melatonin. So starting tonight I’m going to try taking time-release melatonin and see if that helps me any.

What are some of the things going on in my life? Ugh, where to start.

Do I post too much about my personal life? Oh wait that’s why I have a blog.

I’m fully off the nortriptyline and I haven’t had withdrawal side effects for several days now. On the other hand, my persistent fibro dizziness is back, and when I hit a wall with a pain flare I really feel it. I’d forgotten just how much more intense that was before nortriptyline. (Of course, while on nortriptyline it’s not like the end result was any different so I don’t feel like I’ve made a big mistake getting off of it.)

My pain doc recommended trying low-dose naltrexone, which is something my previous pain doc had scoffed at¹, but anyway I’ve sent a message to my GP asking about getting on it, and if she can’t take care of that then maybe my psychiatrist can, or maybe the pain doc can (but unfortunately he’s really busy and appointments with him are booked to well over a month out at this point).

The taper down to 10mg/day was a bit difficult, but the final discontinuation seems to have gone pretty smoothly. I suspect I could have actually discontinued sooner, and the withdrawal symptoms I was having ont he last few days of 10mg/day was specifically because I was toggling right around some threshold for things. But I’m glad I took it slow all the same, and in any case I feel like the worst is behind me at this point.

I seem to be stuck in an annoying situation.

Short recap: I have both ADHD and fibromyalgia. These two conditions tend to have a lot of overlap (they are both thought to essentially be dopamine dysregulation issues), and both of them have a “let’s try different things out” treatment regimen.

Because of ADHD I have great difficulty in focusing on my work.

Because of fibromyalgia I have great difficulty in focusing on anything other than pain.

The medications which help me with fibromyalgia preclude me from being prescribed medications which help me with ADHD.

I’ve been at 30mg of nortriptyline for 6 days now, and I’m trying to figure out if this is how I felt on it before. Going through my nortriptyline tag I see that I actually was up to 40mg on my initial tapering, and after sitting there for a while I decided it wasn’t doing enough for my pain and that’s when I tapered down to 20. In one entry I complained that it wasn’t helping my sleep at all, and how it was making me constantly dizzy and tired and headachey.

This time around it’s definitely helping my sleep, and I’m not dizzy, although I am quite tired (despite actually getting a full 8 hours of sleep every night, for once!) and today I had a headache all day. Also plenty of nausea. But at least I got a nice long walk in.

Yesterday I finally met with a new psychiatrist (having lost access to my previous one back in, oh, March), with the intention of figuring out what to try next in terms of ADHD medication.

As a recap, the first medication I tried (Concerta) just made me irritable and gave me tachycardia, and the second one I tried (Adderall) worked really well for my brain but also made my blood pressure skyrocket.

Anyway, on Tuesday I had also met with my pain doc and the decision we came to was that we should try increasing the nortriptyline again, since 20mg is doing something but not enough, and I couldn’t really remember why I felt like 30 was too much. He wants me to target 40-50mg for my eventual long-term dosage.