What are some of the things going on in my life? Ugh, where to start.
fluffy rambles (Fibromyalgia)
Rambles that are fluffy, by fluffy
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.
Today I had a followup with my doctor after the cessation of gabapentin. My blood pressure is the lowest it’s been in years (118/75!) and she was really happy to see how much less stress I’m under. After discussing the current medication status we agree that I should stay on the nortriptyline for now, and she’s glad that physical therapy has been helping me a lot, as well as me getting better at mindfulness and other stress reduction things.
She also encouraged me to get going with a psychiatrist again so that I can possibly get back on Adderall or to try something else. I think before I do that I’ll see how well I tolerate caffeine. Which I’ve had a bit of over the past few days and it’s not been hecking me up at all, so this seems really promising.
Anyway she gave me a lot of words of encouragement and is also grateful that I’m taking such an active role in trying to make my own life better on multiple fronts. Hopefully this trajectory can continue.
Thursday night was my last dose of gabapentin; I am now off it entirely.
Today I mostly just napped a lot, and had occasional dizzy spells when I was active. I feel no different in terms of pain levels. My blood pressure seems to reliably hover around 120/80. Hopefully it’ll stay that way.
Between the physical therapy I’ve been doing and some lifestyle stress-reduction stuff I’m feeling pretty good. I need to just keep remembering to do my stretches and not let work affect me emotionally.
Gabapentin has been raising my blood pressure (and weight) pretty steadily since February, and it hasn’t actually been helping me with my pain issues. Back before I started on it my blood pressure was generally around 115/85, and as of last Thursday my rest blood pressure was 144/98. Which is, you know, pretty darn high.
So on Friday I decided to cut my dose from 200mg/day to 100mg/day, and see what that did to me.
I’m still alive, I just haven’t had a lot to say I guess. At least not publicly.
Work is work. Lots of frustrations not worth getting into. I was at least managing to get some music done which felt good, and my pain was improving until it suddenly wasn’t, so it’ll still be some time before I can work on comics again. Which is a shame because I really want to work on both Lewi and Unity, gosh I have so much more story to tell on both of them…
I’ve been wanting to do an online concert in lieu of Song Fight! Live (which was canceled due to the pandemic) but I doubt I’ll be in any position to do that either, and my ideas for how to do an ersatz performance would take a lot more effort than I’m willing to put into it right now.
Two and a half weeks ago I got a COVID-19 test, and it finally came back, negative for both PCR and antibodies. So, it’s pretty unlikely that I have or ever have had COVID-19, which means that’s probably not at the root of my recent health issues.
One and a half weeks ago I finally got a followup, proper sleep study, which found that while I do have occasional apnea events, it’s not to the extent that CPAP treatment is warranted or even beneficial. Which is unsurprising; even when I was using CPAP I never found it to be very helpful, and this diagnosis means that I do not have access to my current provider’s DME1 so I can’t, like, get my equipment refreshed.
Anyway. Today I finally had my first appointment with the new rheumatologist. It went really well. I didn’t get any real new information, but at least this rheum is way friendlier and actually treats me like a human, rather than a pile of symptoms. Plus she actually listens to me and is interested in the things I’ve learned about fibromyalgia and so on.
Since my current meds aren’t doing enough for me, she offered two immediate possibilities, either switching the gabapentin with Lyrica (pregabalin), or supplementing it with Cymbalta. Both were things that the previous rheumatologist had suggested but I loathed working with him and never felt like going back1.
I’m personally physically all right, at least for now. The house guest also made it here safely, right before things got really weird.
I gotta say, getting an urgent group text informing my building of an incoming teargas cloud and “Close your windows” is not a thing I thought I’d ever experience first-hand.
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).
So, the update from yesterday is that I am now on anticoagulants again, and I am not terribly happy about it. On the plus side I’m on Xarelto which takes way less management than Warfarin, but on the minus side I am told that I likely need to be on them for a long time (at least a year, possibly forever) due to my prior clot history, and so far it’s been giving me a headache and I’m also constantly worried about, you know, bleeding out and dying.
I’m also still in considerable pain, both in my leg but also in my everything else, because this fibro flare just will not end. And I’m under a lot of stress right now, and I’m frustrated at a lot of things.
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.