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I'm one of the unlucky newbs that had his entire account wiped last night. Anyway, I'll open with a mystery for you biologically-minded guys
For about ~10 years now, I've had this issue where I'm generally healthy, but some chemicals don't seem to be flowing right, and so I've lived in a state of sorta-permanent emotional numbness and pleasure deficiency. I've seen many doctors and psychs and none figured out what's going on. Well, I myself had no idea until last year when a few amazing discoveries happened, and I made some theories. I did an experiment where I'd go out, do some intense cardio for an hour, then go back inside, drink tons of coffee and eat sugary snacks, and relax with a fan. Within a few hours some of the symptoms subsided -- symptoms which no antidepressant or antipsychotic could touch. So I took this discovery online and the response was predictable: Everyone agreed that it was the cardio. To me though this was dubious. I had done lots of cardio before and it had no effect, so why now? I believed the fan played a crucial role, but also understood that was odd. Why would a fan improve these symptoms?
Well, several months later I have the answer. It wasn't the fan that improved the symptoms, but the way I positioned my body when I used the fan! After working out, I would slink down my chair out of exhaustion so that my torso was almost parallel with the floor, with my head against the back of the chair, and then use the fan. After exercising, or drinking coffee, or eating sugary snacks or a carb-heavy meal, if I recline like that, before long my symptoms magically start to fade. I regain the ability to smell, my skin is more sensitive, colors are brighter, etc. This would be a miracle, but there's one problem: insomnia. After just one day of doing this, my sleep is worse. By night 3, sleep is near impossible.
Also, depending on the routine I used, different symptoms would improve. On my cardio-heavy routine, I regained the ability to enjoy music, whereas if I sit in my room and chug a lot of coffee, bodily sensitivity (like sense of smell) increases instead. Further, there seems to be no limit on what I can regain from these methods. The cardio method began with increased music enjoyment, but spread to other forms of pleasure after a couple days. When I stopped all methods, all gains also disappeared.
So that's the mystery. I'm no scientist, but my first guess is something blood or circulation related. Lying supine decreases the effect of gravity which apparently helps blood return to the heart. Gut microbes play a major role in producing both neurotransmitters and our sense of smell. But why would gravity affect this process? And why insomnia? It's all really mysterious. So yeah, ideas welcome! I'm afraid until I discover the mechanism at work here, progress is impossible
If I become a psychiatrist, I pray I don't get you as a patient. I prefer the ones who just get better with pills and CBT (not the one involving roosters).
As for my modestly uninformed opinion, I have no fucking clue, but if it works it works, and psychiatry is a practically pre-paradigmatic field so I wouldn't sniff at it.
If the pills don't work, you're kinda S.O.L. There were actually two meds I saw mild results on -- Nortriptyline and Tranylcypromine. I told this to my psych, but rather than perking up she frowned and said "I can put you back on the NTP but the parnate's too dangerous". It has to be a downer when your patient finally responds to a drug, but all you can say is, "Didn't work well enough, onto the next one". And maybe that's the best option. I've seen psychs try to write smartly-designed protocols online, but they still boil down to "This pill is effective for a lot of people and we don't know why", with directions on how to safely use it, but you're doing the same thing as all other psychs. c'est la vie
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This reminds me of this person with Myalgic Encephalomyelitis. He received a Halo to hold his head up and went from bedridden to energetic rather quickly.
Having a rare problem definitely changes how you see the medical world. Not in a pessimistic way though. More like, it's amazing our protocols work as well as they do. If you have a toothache, any doctor can give you a painkiller + antibiotic and the problem will just vanish. That guy's story kinda paints ordinary doctors in a bad light, but if there is no protocol for solving your problem, then doctors aren't really prepared to help. This criticism gets levied against psychiatrists a lot, but doctors operate the same way -- they just appear better because doctor protocols are much more advanced. Medical consensus has taught our doctors everything they know, so when it comes to fringe issues like ME which aren't acknowledged by the medical world, it only seems right to defer to consensus and ignore it too rather than go out on a limb & explore.
Rather than blaming ordinary doctors for doing their job, I think we need a better pipeline established between rare-disease-sufferers and genuine medical researchers. The problem is that for every person with a genuinely rare problem, there's probably 10+ people who fit neatly into a pre-established disease category, who constantly badger medical workers that they're different. That's why the doctors in that guy's story are so dismissive, they deal with this shit non-stop. Right now there's no simple way to prove you're a genuine outlier. Maybe there is and I missed it.
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While I think your initiative is extremely laudable, just know that the path ahead of you is fraught. You may have a serious medical issue which forums could exacerbate. But keep documenting things, trying new things, and taking the initiative. I'd recommend a heavy bias towards experts who can see you in person, even if you have to shop around for the ones that work for you. Cautionary note: cascades of care, and incidentalomas.
Lastly, this reads like you're looking for a simple fix that has a clear mechanistic explanation. Generally speaking, I would not expect such specificity, but keep trying to make things better.
So, here is a layman speculation (without knowing your age, weight:height, mood, stability, aerobic capacity etc).
This sounds like anhedonia. It could be hormones (testosterone, free-T, T:E ratio, various thyroid hormones, medications you are taking, cortisol, micro or macro nutrient deficiency). These can all be looked at in one blood panel. I'd start with a full workup from a GP. (and the results will give us amateurs more to (possibly dangerously) speculate about!)
It may be a neurotransmitter imbalance. This can be an appealing thought, as it seems to promise a clear mechanistic solution. IME, it isn't nearly so cut and dry. If you can get through your day without chaos, I'd investigate this last.
For now:
Consider cutting caffeine. It isolates one variable and should improve sleep. I won't sugar coat this, this is awful for a week or two. However, you'll get back good data quickly. Sleep is a miracle drug.
Consider following a balanced diet of whole foods with a tiny caloric surplus. Whole foods and sufficient calories are the goal.
Supplements: vit-D+k, zinc, and magnesium are the most common deficiencies. Might want to wait until after the blood panel. Creatine 5g per day because almost no harm, many potential benefits. L-citrulline (malate is fine). May improve blood flow at 10g per day. Glycine for sleep. NAC works for some to clear brain fog. Can also allegedly cause anhedonia (did neither for me). Prob some others but the supplement world is waaaay overhyped imo.
One-crazy-thing: Carnivore diet. Never tried it. Seems insane. The good: It's simple (but not easy) to adhere to. It's an elimination diet so fewer variables. Its radically not the same, perhaps resulting in different outcomes. Wide anecdotal support. The bad: most support is anecdotal. Its wild. Diarrhea for a week.
Again: have a bias towards experts in person, but keep the initiative. Its your life you're free to experiment and deviate. Best of luck.
I've had this problem for a full decade now, so I've tried all the things you mentioned. Did carnivore, ingested a weird chemical powder from China, got blood work, etc. If none of that works, you're left alone to theorycraft some possible cause. Hence the post
Oooof. That's rough. Yeah, I'd say you're at the theorycraft stage. Add some info to your post. I'm still unsure exactly what your symptoms are, how they present, your clinical history, and current status.
I'm stumped, and this is way beyond my pay grade anyhow. I perused the "The Mechanical Basis of ME/CFS" post. Interesting stuff from deep down a rabbit hole. And from your other comments its seems like you know how things work. Best of luck!
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One thing that can be helpful in situations like these is something which programmers call "rubber duck debugging". The method is to put a rubber duck (real or figurative) on your desk and then explain your problem to the duck. Quite often, the solution to your problem becomes obvious.
I think you've completed the first step by writing down your problem here.
Now, what does the duck say back?
What would you say if someone else told you this exact story?
I'd suggest they go find a doctor or a bored med student, but it's hard getting an audience with those guys, so we're forced to solve weird medical puzzles ourselves.
Mf just ignoring me right here, with all the solicited and unsolicited medical advice I dish out for free.
That's it, I'm going to get Zorba to implement micropayments and a blockchain so I can bill you all.
(But as I said above, I'm not touching this one, psychiatry is built on One Weird Trick like talking to people and making them feel better, resetting their brains with electrical currents, supplementing neurotransmitters when we know there isn't actually a deficiency, fucking ketamine yada yada. But those are Weird Tricks that scale, and I'm betting this doesn't)
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The caffeine would contribute to the insomnia, especially if consumed after noon. Can you try the same routine with less/none, or earlier in the day?
Sure. When I'm not experimenting with some routine, it seems that caffeine has a negligible impact on my sleep. But really, in my "normal state" the effects of most drugs are far weaker -- it takes me a lot of alcohol to get drunk -- so maybe one of the improvements was increased drug sensitivity, and I received the full impact of the caffeine which caused insomnia. That's a good suggestion, I'll give it a try. Thanks
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