fluffy rambles (Fibromyalgia)

Current state of affairs: the opioid painkillers have stopped being effective, so I’m gonna stop taking them for now. My doctor prescribed me a rather aggressive regimen of Tylenol (4000mg/day! holy crap) and some muscle relaxants, the latter of which help a little but not very much. She also increased my daily dose of gabapentin from 200mg to 400mg, and that isn’t helping much either.

I did finally get one of those old-school hot water bottles (the rubber kind which fill like a balloon and have a screw-in cork) and it turns out that this is a really good use for my sous vide machine, so that’s cool. The hot compress seems to do more for my pain than any of the meds do. Not enough to be, like, productive, but enough that I’m not screaming in pain. But maybe I can get back to work.

Anyway, on the plus side I finally got set up with a new rheumatologist, and I’m also starting physical therapy, so maybe those things will help with my ongoing fibro issues (which this could very well be yet another expression of, for that matter).

Oops, I guess I haven’t been posting here as often as I’d like. I guess I’ve mostly been using Discord to keep in touch with folks.

I’m fairly busy at the day job. I’ve already rolled out a few important features for our websites and soon I’ll be ramping up on another project. So far everyone there has been super great and I’m glad I lucked out with this job, even without the societal/financial catastrope that happened shortly after I started.

Isolation hasn’t been great for me. I’ve been having a pretty bad fibro flareup lately, and I still haven’t quite shaken whatever this dang thing I have is. It’s not gotten severe enough to require medical attention but at the same time I’d love to not be missing occasional workdays when I’m feeling especially lousy. It might also just be part of the fibro flare, too. Fortunately the new job has unlimited sick days, because dang I’ve been taking a lot of them this past month.

I’ve had to switch back to decaf because it turns out having even half-caf espresso every day has gotten me sensitized to caffeine again, and I was starting to have panic attacks again. Phooey. I still love my Flair though. I’ve also had a couple of people ask me about selling my custom tampers so I should see about, like, doing that.

So, I am using way more soap than usual when washing my hands, which has been drying out the skin a lot. To try to counteract that I’ve been using lotion a lot more. But it turns out that this leads to more tactile stimulation on my fingers (basically I constantly feel like I’ve just been soaking in the bathtub for an hour) which in turn leads to a sensory overload/pain flare, and it doesn’t even help with the dry skin anyway, and the dry skin also leads to its own level of sensory issues too. And Fiona’s insistence on sitting on my lap while I work isn’t helping at all. Just before lunch I had a bit of a meltdown because of it.

I guess I need to figure out a better way to periodically clean my hands without leading to other issues.

I could also really use a haircut, because my wild scraggly hair getting in my face is making this worse. Of course all the hair stylists are (rightfully) closed right now. I suppose I could break out my Flowbee but that feels like it’s taking the “mental stress due to isolation” look a bit too far. (Plus I don’t want my hair to be that short right now. I need every femininity cue I can get these days.) Maybe it’s time to finally learn how to use hair clips, but I suspect feeling them bouncing against my face would make me flare too.

Why is my brain like this? Ugh.

That ended up not going very well.

It’s still a good to-do list of stuff I want to do, but making comics, working on AR stuff, and generally being in pain/depression while also figuring out my ADHD meds has taken a lot more out of me than I expected.

Really gotta stop being overly ambitious.

So on this, the 6th day of being at 3x daily gabapentin, I noticed that I haven’t been in severe agony all over for the first time in a while. I’m still feeling tendon pain in the parts that get chronically overused (especially my thumbs) but it’s not doing the usual radiating thing that turns into systemic pain all over.

On the minus side, after taking my afternoon dose I got incredibly nauseous which only really started to let up 7 hours later (which is, incidentally, the elimination half-life of gabapentin), and this is the worst the nausea’s been. I’d been getting somewhat nauseous from the doses before but as it builds up in my system it’s just been getting worse and worse.

So I sent a note to my doctor asking if there’s a better way of dealing with it (because I’ve been very unable to get stuff done for the last couple days and I have a lot of stuff that needs to get done!) and meanwhile decided to go back to 2x/daily.

Supposedly the nausea subsides after 2-3 weeks but I really can’t wait 2-3 weeks for that to happen right now. I have GeekGirlCon prep to do, I have a job interview down in Portland sometime in the next week or two (for a job I’d probably be staying in Seattle for but it’s Portland-based and this means I might have to go to Portland more often, oh the horror! no, not the comfy chair!), and I have AR stuff to do in the meantime.

Anyway. Hopefully this means there actually is some hope in sight, and I just need to find the right balance of things. Or maybe something else that helps to counteract the nausea while I’m still acclimating to the gabapentin.

I guess I haven’t posted a public update on my gabapentin experiment in a while. Yesterday I started taking it twice a day, 100mg each time. I also created a simple blood serum estimator more to satisfy curiosity than anything else; I don’t expect it to be all that useful for anyone although I’m thinking that at some point I’ll add the ability to plot graphs and maybe specify the times of days for the doses or something?

Anyway, taking it in the morning as well as the evening means that I get a nice surge of dizziness, which will supposedly pass eventually (and will get better when I get up to 3x a day). So far I’m not noticing any difference in my pain levels, and I kinda feel like my emotions might be a bit more intense? Last night I certainly had a bout of frustration with technology and drawing apps (I really want to work on comics again and I feel like my tools are actively getting in the way!) but I’m feeling much more even-keeled today at least. Drowsy a lot though.

This is certainly an interesting time for me to be experimenting with my neurochemistry, as I only have a few days left at my current job and am also trying to ramp up on some projects at the AR startup while also juggling an interview process with a well-known and generally-beloved non-profit corporation that I’d love to work at – and so far that’s been going really well! I just hope my brain has stabilized again by the next interview, which is yet to be scheduled. Anyway I’m waiting for that to happen before I go up to 3x100mg of gabapentin.

Oh also I’m finally making progress on redoing my kitchen, which is way overdue. The previous owners had done a really cheap, low-quality job of refurbishing it about 10 years ago, and it’s all been falling apart. I’m taking the opportunity to finally fix some long-standing issues with it, like a lack of storage (caused by a ripple effect from a way-too-large sink) and also switching to a smaller refrigerator and dishwasher (freeing up more storage space). Also going to finally get a new range, with such perfect timing since the oven in the existing one has finally given up the ghost for good. Unfortunately there’s only one range available that actually fits in the space (due to the odd venting configuration) and going with a different solution would require a lot of compromises and be way more expensive (due to the aforementioned odd venting situation), but still, I think everything will be better in the long run.

In any case, given that I’ll soon be working from home most of the time again, it’ll be good to have a space where I can enjoy cooking for myself again.

(I’m also looking forward to getting back in the habit of buying bulk produce and unbutchered meat at my favorite restaurant supplier. And probably doing more sous vide again!)

So, yesterday I finally got my prescription for gabapentin/Neurontin, as another attempt at managing my fibro symptoms. Took my first dose at 9 PM, and felt very tired and dizzy by 11 PM. Then still managed to not fall asleep until around 3 AM (I was definitely wide awake at 2, and my smart bed thing says I didn’t fall asleep until 3 so that seems believable).

I slept pretty okay although I had vivid dreams about unpleasant stuff, as always seems to be the case when my neurochemistry is being tampered with.

Woke up at 8 AM, couldn’t actually peel myself out of bed until half past 9, and I felt wobbly/dizzy/tired all day.

Pain was okay in the morning, but at 2:40 PM or so I had a flareup. It cleared up with a snack, though, and I kinda-sorta managed to get some actual work done, ish.

Went home at 6, had dinner, not sure where the past two hours went but I’m really tired and sleepy right now and also flaring like a matroncopulator, and it’s time for my next dose. Maybe I’ll sleep better/longer tonight and feel better tomorrow.

So, the first two dosage tapers on my nortriptyline (40→30 and 30→20) went off without any trouble, but going down from 20→10 was really hard, to the extent that I decided to go back to 20 and keep using it for now. Basically, I had massive SNRI withdrawal symptoms, and also ended up being in severe pain all over. After two days of that I decided that maybe the nortriptyline is doing something for me after all, just not as much as I need it to, and went back to 20mg/day. I’m still feeling pretty hecked up from that so it’ll probably be a couple more days until I’m back up to where I was before.

Supposedly it’s okay to take both nortriptyline and gabapentin, so maybe I’ll try combination therapy once I’m back to my previous homeostasis (which was livable but not great).

Meanwhile, I really hope I’m able to do a song this weekend… it’s a gift for someone and I need it to be done by Monday, and I just plain haven’t had time to work on it.