fluffy rambles (Fibromyalgia)

There are so many things I’d like to be doing with my time, except every time I start on any of them I get a major pain flareup. And that makes it really hard to get into what I’m doing, and then the moment I have any minor setback (such as a problem with the tool I’m using) that just makes the pain explode even further and then all I can focus on is how much I’m hurting.

I’d love to be making 3D models for VRChat or drawing comics or making music, but all of those things just feel so inaccessible to me right now. And even playing games hurts, and even hanging out in VRChat can be pretty painful too because even standing up for an hour at a time is awful (and doing VRChat while sitting down has its own share of issues).

I’m grateful that I don’t have to worry about money so much, but gosh, there’s more to being productive than making a living. Quality of life is important and that feels just so lacking right now.

I just feel like so much stuff is locked inside my head and screaming to get out, and I sure wish I could just like. Not be like that.

So, in the past, the “Simply Cheetos” brand of Cheetos didn’t use monosodium glutamate in it, so it was a safe thing for me to eat.

Today when buying lunch at the grocery store, I saw that they had the Flamin' Hot Simply Cheetos, so I bought a bag, and did a cursory glance of the ingredients list and didn’t see MSG on them. Then I had a bunch with dinner, and noticed a rather strong umami flavor (but not the same one that I normally associate with MSG), and paid it no mind.

Later in the evening I started having a really bad bowel reaction to something and started looking at the ingredients listings of everything I ate today to see what it could be, and that’s when I noticed MSG on the Cheetos label.

However, I don’t think it was the Cheetos' MSG that did this! In fact I think I might actually no longer be MSG-sensitive. And looking back, I don’t think I’ve had an MSG reaction ever since I did the ketamine treatments in March (even though I’ve knowingly had MSG a few times since then). There have been a whole lot of unexpected neurological changes that did happen from the ketamine infusions; in particular, ever since those treatments, caffeine doesn’t give me a massive panic attack when I have as little as half of an espresso (I can now tolerate a large Mountain Dew with just a slightly elevated heart rate!), and sucralose doesn’t give me a headache anymore either, and alcohol doesn’t make my pain flare up either.

All of those food sensitivities are highly co-occurrent with people with fibromyalgia, which was the main thing I was trying to treat with ketamine. While the chronic pain and fatigue symptoms haven’t gone away (and those were the main things I was trying to treat!) it’s possible that ketamine at least did have some beneficial effect.

I’m still not going to rush out and like. Consume all the MSG, just as I don’t rush out and consume all the sucralose/Stevia/etc. either and still prefer decaffeinated beverages for a bunch of reasons (although it’s nice being able to self-medicate my ADHD again!) and still limit my alcohol consumption, but maybe I don’t need to worry about those causing unexpected problems anymore.

Anyway. All this is to say that I still absolutely believe that MSG sensitivity is a thing (based on my prior experiences) but also it might be possible to get away from it! I’m not sure undergoing expensive ketamine treatments is worth it for this effect alone, but it might be a nice side-effect for folks who are seeking it for other reasons.

Two weeks since my last ketamine infusion and my anxiety is… present, again, and my chronic pain never went away at all but now I’m feeling a lot more aware of it.

I went back and tried Adderall again and it didn’t mess me up, although it also didn’t help me like it did the last time I tried it. But neither Adderall nor caffeine are messing with my blood pressure or increasing my anxiety, so I’ve reopened the conversation with my doctor regarding other meds for ADHD. In particular, I asked about Dexedrine and Desoxyn. Both of them seem promising at the dosages I’m looking at, although my insurance won’t cover Desoxyn (which is unsurprising, there was a TV series about it) so we’re trying Dexedrine first.

Regarding chronic pain, my doctor went over my chart and he noticed that we never really did anything about my high triglycerides, and then he had a thought: what if my high triglycerides are contributing to my fibro symptoms? Doing some cursory literature search found that it’s plausible, at least, so I’m also going to start on Fenofibrate to lower my triglycerides and hopefully get my body in some sort of balance there. He’s also ordered some more labwork to see if I have any gaping vitamin deficiencies.

Have I mentioned how much I cherish this doctor? Of all the doctors I’ve seen, this is the only one where I feel like he actually listens to me, doesn’t talk down to me, understands that I know my body and have done my reserach, and is willing to try things to attempt to treat these complex, deep-seated issues that have caused me problems for the past 25-odd years. It’s a lot easier to be patient as a patient when the healthcare provider treats me with respect like this.

He’s definitely a rare breed.

• My resin printer arrived today. It was a bit obnoxious to get a working print and holy heck it’s a messy process even when it does work, but this’ll be fun to mess with. (Yes, I now have three 3D printers. Only the resin one is actually operable right now, but the Artillery Genius has some repair parts on th eway, at least.)
• I accepted an offer on my condo. It’s a lot less than I was hoping for but it’s still plenty of money. When that sells I can start working on building out the studio, which is the linchpin for getting a bunch of my other house ambitions underway.
• I’m having one heck of a fibro flare and this makes it very hard for me to actually focus on work. But also there’s a stress factor involved. Hopefully that all sorts itself out soon.
• Because of the aforementioned flare I’m also not making much progress on getting my living room or kitchen in any sort of order. But I’m still slowly chipping away at that glacier.
• Cannabis isn’t really helping with the fibro right now, either.

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.

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.