fluffy rambles (Fibromyalgia)

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.

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.

Publ survived the load test. Will fluffy survive the ego test? Time will tell.

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.

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.