Not that anyone would ever want to be in chronic pain or anything, but holy fuck am I tired of being in it.
fluffy rambles (Fibromyalgia)
Rambles that are fluffy, by fluffy
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.
Two weeks since my last ketamine infusion and my anxiety is… present, again, and my chronic pain never went away at all but now I’m feeling a lot more aware of it.
I went back and tried Adderall again and it didn’t mess me up, although it also didn’t help me like it did the last time I tried it. But neither Adderall nor caffeine are messing with my blood pressure or increasing my anxiety, so I’ve reopened the conversation with my doctor regarding other meds for ADHD. In particular, I asked about Dexedrine and Desoxyn. Both of them seem promising at the dosages I’m looking at, although my insurance won’t cover Desoxyn (which is unsurprising, there was a TV series about it) so we’re trying Dexedrine first.
Regarding chronic pain, my doctor went over my chart and he noticed that we never really did anything about my high triglycerides, and then he had a thought: what if my high triglycerides are contributing to my fibro symptoms? Doing some cursory literature search found that it’s plausible, at least, so I’m also going to start on Fenofibrate to lower my triglycerides and hopefully get my body in some sort of balance there. He’s also ordered some more labwork to see if I have any gaping vitamin deficiencies.
Have I mentioned how much I cherish this doctor? Of all the doctors I’ve seen, this is the only one where I feel like he actually listens to me, doesn’t talk down to me, understands that I know my body and have done my reserach, and is willing to try things to attempt to treat these complex, deep-seated issues that have caused me problems for the past 25-odd years. It’s a lot easier to be patient as a patient when the healthcare provider treats me with respect like this.
He’s definitely a rare breed.
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.
- My resin printer arrived today. It was a bit obnoxious to get a working print and holy heck it’s a messy process even when it does work, but this’ll be fun to mess with. (Yes, I now have three 3D printers. Only the resin one is actually operable right now, but the Artillery Genius has some repair parts on th eway, at least.)
- I accepted an offer on my condo. It’s a lot less than I was hoping for but it’s still plenty of money. When that sells I can start working on building out the studio, which is the linchpin for getting a bunch of my other house ambitions underway.
- I’m having one heck of a fibro flare and this makes it very hard for me to actually focus on work. But also there’s a stress factor involved. Hopefully that all sorts itself out soon.
- Because of the aforementioned flare I’m also not making much progress on getting my living room or kitchen in any sort of order. But I’m still slowly chipping away at that glacier.
- Cannabis isn’t really helping with the fibro right now, either.
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.
I’ve been on low-dose naltrexone for a whole month now, and I don’t think it’s really helping with my pain.
And I’ve been on guanfacine for two weeks, and while I’ve noticed a slight improvement in my focus (and a general lowering of my blood pressure, which is of course to be expected), holy cow am I drowsy all the time. Like, to the point of nodding off while sitting still or whatever. I hear that this effect goes away after a couple weeks, and I really hope it does soon, because even though I’m generally getting a full night’s sleep every night I still wake up exhausted and end up taking little mini-naps throughout the day. Heck, even while going grocery shopping I occasionally feel like I’m going to fall over.
On the plus side, caffeine doesn’t give me as big of a panic attack now (although I still feel a bit of one) so that’s at least filling in the gaps while I try to stay awake at work.
Bonus thing: yesterday I tried coating my glasses with soapy water (based on seeing an article in Glamour) and it actually works pretty well! The article suggests thoroughly cleaning them, but I just mixed a little bit of liquid hand soap with a glass of water and dunked my glasses in them and let them drain. It’d probably also work pretty well to dilute some dish soap and swap it on with a cotton swab or something.
Do I post too much about my personal life? Oh wait that’s why I have a blog.
I’ve been on Wellbutrin for a couple of weeks now and the effect has been interesting. I’m definitely finding it easier to focus on things like chores (and heck, my kitchen is the cleanest it’s been since the remodel got finished, and my dining room is well on its way to not being a disaster), but on the other hand it’s disrupting my sleep a lot and I end up feeling tired throughout the day. My dreams have also been way more intense.
Right now I’m feeling sick with my usual winter sinus crap, so I’m a bit wobbly and a lot nauseous.
Between the Wellbutrin and playing DDR my pain levels are a bit lower but still not amazing, and I’m still finding it easy to hit a fibro wall™. Tomorrow I have a followup with my pain doctor to try to finally get on low-dose naltrexone. I also have the next two weeks off from work and hopefully I won’t end up just working too hard on personal projects instead. (That said, I have a couple of creative output gift swaps with deadlines coming up that I really should start on at some point.)
Anwyay I guess I don’t have a lot else to say. Oh well.
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.
Today i had a followup appointment with the pain clinic. Unfortunately, as soon as I started working again my pain flareups came right back. But the doctor was able to pinpoint a few things which are probably the underlying causes, and gave me some more exercises to try. We also decided to try increasing my nortriptyline dose again; I’m on 30mg for the next week then going up to 35 after that (update: and mentioned an eventual target of 40-50, forgot to mention that).
It’s also pretty clear that stress is a huge factor, and boy howdy have I been under a lot of it. Fortunately my new workplace is hugely into giving generous vacation benefits and making sure people actually use them, so in a couple weeks I’m taking a trip out to Port Angeles and staying in a tiny house for a week. I’ll probably bring a guitar and my iPad and try to just, like, decompress, and Be, and spend a bunch if time in the olympic peninsula and enjoy the small town vibe.
Everything I’ve seen about Port Angeles indicates it is a pretty good place with a lot of comfort potential. Maybe even the sort of town I’d want to retire to. And apparently it’s even pretty trans-friendly! I look forward to seeing this year’s Clellam county election results.