busybee fluffy rambles

So, a couple months ago I started on Lyrica, which made me super fatigued and didn’t help with my pain any. And I got super frustrated about not being able to get anything done.

Over the last couple weeks I’ve been tapering off the Lyrica, and it’s made a huge difference in my energy levels: I’m actually able to do stuff again!

So of course with this surge of energy I’ve been Doing All The Things, with the inevitable result that I am now in incredible pain because I’ve overdone it (as you could probably tell by all the work I did on the streaming music prototyping over the last couple days). And of course, I got it to a spot where things are useful for a hypothetical future, but nothing anyone else can actually use just yet.

My life is such a precarious balancing act, huh.

I’ve changed my Lyrica dosing schedule to take it all in the evening, which has helped a little with my fatigue but I’m still just so very tired throughout the day and can barely get anything done.

I’m also still in a lot of pain and can barely get anything done because of that, too. I feel like what few responsibilities I have these days are falling by the wayside and I feel awful about it.

In particular, I have a few pieces of music I need to get done soon and I want to get done but I just can’t work up the energy to do so. Plus I still want to finish the basement reorganization project and that just feels Bad right now.

This weekend was also pretty draining, from Song Fight! Live (which went well but which I have some Thoughts about which aren’t suitable for sharing in public), and then yesterday my ADHD support group had a somewhat-impromptu meeting at Cal Anderson which was a bit of a nightmare to get to and not worth the energy expenditure given how few people actually came.

I’m just so tired of being tired.

Just had a realization that this massive current big-fatigue problem started right around when I started on Lyrica, which hasn’t helped with my pain at all, and I do recall mentioning the fatigue to my doctor and her suggesting some other things to try, but uh, maybe this is just as useless for me as gabapentin was

sure is great having a treatment-resistant chronic disorder or two

I had a long-overdue physical with my doctor last week, and after explaining my various struggles with fibromyalgia, long COVID, and suspected ME/CFS she put me on two new medications, Singulair, for the persistent shortness of breath, and Lyrica (pregabalin), for the chronic pain. I’ve only been on them for a few days but here’s some observations so far:

My breathing problems have cleared up quite a bit, in that I’m not randomly feeling short of breath when I’m just sitting on the couch. So far I haven’t noticed any of its many potential side effects, but I also theoretically shouldn’t be noticing any positive effects this soon either. I haven’t done any significant physical activity so I can’t yet tell whether it’s effective as a prophylactic against exercise-induced asthma (which is the main reason I’ve been told I should be on it for years).

I haven’t noticed any significant reduction in pain, but I did have a day of extreme drowsiness when I started the Lyrica. The drowsiness has already cleared up but I’m still having a bit of “finger no worky” problems at times, and I’m already having the major constipation that happened with gabapentin. Increasing my water intake is always a good idea as would be going back on docusate, although I don’t recall that helping with gabapentin.

I’m definitely feeling a bit dizzier than usual and won’t be driving at all until things settle down a bit. Fortunately there’s Lyft (sigh) and the bus for most of the places I need to go which aren’t in walking distance. I’ve been thinking about getting a cheap electric bike/cargo trike/scooter for grocery and short-distance travel purposes, and that might even be an overall better setup than owning a car anyway.

Also as of late my hypermobility has gotten a lot worse and I am pretty sure I do have some form of EDS (and not just some unspecified “hypermobility spectrum disorder”) after all. So, that’s fun.

My disability hearing is in two weeks and hopefully it goes better than the previous parts of the process. I’m not optimistic.