Disability hearing
I finally have a disability hearing tomorrow morning. Feel free to send positive vibes, if you’re into such.
Current statuses
Things seem to be moving forward, except for where they aren’t.
Meds and such
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.
May is/was ME/CFS awareness month
I only just learned from eladnarra’s blog that May is ME/CFS awareness month, which I guess is fitting given that throughout all of May I’ve been getting painfully aware that I may have been developing it on top of everything else.
Basically, ever since I got COVID last June I’ve been especially prone to fatigue, vertigo, brain fog, shortness of breath, a persistent cough, and a whole bunch of other long COVID signs. The worst of it comes and goes, but this month has been particularly bad, especially on the fatigue front. And ME/CFS is a very common part of long COVID.
I’m fine BTW
Some folks wanted an update and didn’t see the webmention-based updates on the last entry. I discontinued the Effexor and the concerning symptoms subsided throughout the day, and I only had minimal withdrawal symptoms (basically just a few hours of extreme nausea and some really intense dreams for a couple nights).
I’m annoyed that this didn’t end up being a workable solution but I’m still holding out hope for the vestibular rehabilitation, as well as some other things I’m trying, and whatever happens I’m determined to survive and thrive, regardless.
Jinxfexxor
Wellp, as usual, saying anything vaguely optimistic about a new medication has angered the side effect gods, as over the course of yesterday I noticed I was having progressively more trouble breathing and swallowing and a feeling of swelling in my throat, which is on the list of Effexor side effects to watch out for and to immediately contact your doctor about. So, I’m pausing the Effexor for now (hopefully having been on it for only three days at the lowest dose will minimize the withdrawal effects, ugh) and have sent a question to my doctor about it.
If dopamine regulation is so great, why doesn’t my brain just do it on its own?
Effexor
The only theory that anyone’s come up with for my vertigo issues that holds any weight is that they’re possibly vestibular migraines, so my neurologist put me on Effexor, which can help treat vestibular migraines.
It can also treat anxiety, fibromyalgia, and ADHD (which makes sense, as they’re all fundamentally dopamine dysregulation problems, and Effexor works primarily by regulating dopamine), so maybe this will be the magic bullet that helps me with everything. Several of my friends turn out to be taking it for their fibromyalgia and/or anxiety and they say it helps them somewhat, so, we’ll see.
A timeline of my chronic pain
Here’s some stuff about stuff.
The agony of being
The last few days I’ve been having yet another awful chronic pain flareup. So it’s been one of those time periods when I kind of wish I didn’t have a body, or at least didn’t have to exist so much.
This time I don’t even know what brought it on, it just kind of came out of the blue, after a whole week of being too fatigued to do anything substantial.
I’m trying to finish up my remaining commitments for strawberry jam although everyone waiting for music from me is understanding and not in a huge rush. There’s one piece I want to get done today because the team is trying to wrap up development today but they also waited until the last minute to give me a specification for what they wanted so I’m not feeling too bad if I can’t get anything done for them, I guess.
Music updates
My big fibromyalgia flare seems to have finally subsided, so I’m back to working on music, yay.
Right now I’m working on recording “Sunny Again” for Transitions. The Transitions version has ended up being somewhat more complicated than I was expecting, so this will take a while to get finished. But I really like the arrangement that I have, and I hope that I can pull it off.