u/RecursiveRottweiler

I just don't... care. Everything is organized around that visit right now. I spent 6 hours in a catatonic episode, then came out of it myself. The treatment is highly standardized and pretty much any psychiatrist can diagnose the condition, considering that I had pretty much every symptom of hypokinetic catatonia. I was aware the entire time and all they really did was run irrelevant tests and act like I was unconscious while my fiancé kept telling them about my history of catatonic episodes, and how (1) I was conscious and aware and (2) they should call down a psychiatrist.

They discharged me with a catatonia diagnosis, they just didn't treat me for it. Which is great, considering that actual treatment doesn't end with the cessation of a stupor: APA guidelines say 24-48 hours of IV lorazepam is the clinical indication. Not that I expected to be sent home with an IV, but somehow I expected them to actually help me, they did absolutely nothing except for act useless and dehumanize me, and they diagnosed me with a condition they never bothered to treat me for.

I see a psychiatrist who specializes in complex cases on Friday about the recurrent catatonia. I moved up the appointment because of the ER visit. I just don't... care. I've got no idea why I haven't maxed out my credit cards, or something. I asked my old therapist if we could do a single session just to see if they might be able to help me get my head right. I'm looking for a new therapist but essentially choosing based on entertainment value: I ended up emailing someone whose entire practice is Halloween-themed. Who gives a shit if they're good? I don't. Fuck me up, Dr. Pumpkin Spice.

It's getting a little better, slowly. I know what's indicated for an acute post-traumatic stress response: a short-term 6-session exposure therapy or EMDR protocol. But I don't want to do that, so instead I'm arranging a consultation with the therapist I am referring to as Halloween Lady, because why the fuck not? Maybe she's good. When I saw that her website was Halloween-themed, I was really hoping there'd be signs that she was an entertaining and unprofessional train wreck, but unfortunately she seems to have actual standards.

I got my PCL-5 score (a scale of PTSD severity) from 68 to 25 over 2 years. Now it might end up back to being clinically significant and I might be considered to have CPTSD again. I can't wait! I really just didn't have enough to deal with. The world is an empty place where nothing matters and you'll never be treated like a human, recovery isn't real, and I'll never lead a meaningful life where I'm anything but cripplingly disabled.

Logically, I know that recovery is real because I've more-or-less done it. Emotionally, everything and everyone on Earth can just go and fuck itself, and nothing has any meaning or value or point, and the world is a cruel place that's random and chaotic and horrible.

I really don't want to hear about how our brave emergency workers did everything right in their fucking clown makeup. This is literally impossible considering how I was diagnosed with a medical condition that I didn't get treated for, they didn't listen to my fiancé's clear explanation of my symptoms and medical history of diagnosed catatonic states, and somehow 6 hours is just too long to call down a psychiatrist for one of the only conditions in psychiatry known to have direct morbidity.

I'd call it a pipeline for iatrogenic harm, but that implies any actual health care was performed, when all they really did was stick me in a bed and consider giving me one of the very specific drugs that are most likely to induce malignant catatonia, which, judging by my total lack of treatment, probably would've just killed me. I'd like to personally thank every single medical professional involved in fucking up this entire situation with absolutely no reason to do so, and for destroying my mental health and putting me in this state where nothing matters and my entire life feels ruined.

I'm going to go cry again now. I spend a lot of my time crying since Sunday.

I really thought that the emergency room would help me. Instead I was violated, dehumanized, medically neglected, and thrown out of the hospital with discharge instructions to... follow up with the people I already had appointments with. Dr. Useless is really doing a stand-up job over at the clown hospital.

My fiancé was there the entire time. He told the paramedics everything. He told the doctors my history, the appropriate treatment, etc, so they ignored all of it and decided to do nothing.

Upside: I now don't have to convince the complex case psychiatrist I see in 3 weeks that I have an extraordinarily rare disorder (recurrent catatonia).

Downside: I spent 5 hours in the emergency room surrounded by idiots who could've solved the problem in under half an hour with a lorazepam IV, recovered without them doing anything, and left.

Oh, extra downside, I have to report the hospital and pretty much everyone else involved because the paramedic almost killed me and the hospital could've solved my five hours of effectively being in locked-in syndrome very quickly.

Because, y'know, it is particularly traumatizing to be unable to communicate while people assume you're just crazy even once they're given the correct diagnosis, essentially treat you as a liability to be managed by having someone watch you as a suicide risk with no indication of suicidality. They had someone watch me and put me on a 5051.

Because that's something I needed more of: trauma. Like being moved between beds by people who didn't secure my head and went "what's wrong with this guy?" when they bashed my head and I didn't respond.

And I was fully conscious through this whole "treated as less than human, denied basic bodily autonomy and health care, almost accidentally killed, and essentially just medically neglected in a facility with no excuses" experience.

I was barely able to say "antipsychotics are contraindicated" when they started talking about dosing me with Olanzapine, they clearly considered doing it anyway, and the paramedic suggested that i was having a panic attack and would be fine by the time we reached the ER. I could not move or speak, and the only time I did was to prevent a flippant idiot from murdering me. Granted, Olanzapine would have been the right move for any other condition, but maybe don't scoff when the person who can't even open their mouth for their temperature to get taken when they can barely voice a drug contraindication.

Reliving catatonia is my worst fear. My 8 month catatonic episode when I was 16 is the worst thing that ever happened to me. If my fiancé hadn't been there, I don't know what I'd be feeling right now. I already feel so... Disposable, like it doesn't matter if someone hurts me or lets me languish in a horrific level of suffering. Because to these people, it didn't.

They decided to test my motor reflexes after being told that I have recurrent catatonia by my fiancé, that the cause and condition are known. They literally stabbed me to find out if i'd respond instead of following up the clearly indicated treatment that they never even gave me, all while making sure to acknowledge that things like this "look barbaric" to my fiancé, without regard for my complete clarity and total consciousness.

Fuck. Yet another reason to see a psychiatrist about this awfulness. I was treated with so much inhumanity and indignantly, and I didn't even get treated criminally, I just got treated by a system designed to essentially torture me when I had zero recourse. That's really what I needed.

I really might rather die than go through this experience again. I just can't keep doing this. I can't keep experiencing torturous suffering while the reality of that suffering draws on conclusions that the psychiatric causes mean that the problem doesn't matter and I don't need to be safe or have my horrific psychological experience taken seriously.

Edit: some clearing up.

• I didn't want an antipsychotic that legit might kill me delivered by a rude and dismissive paramedic.
• I expected the IV because IV lorazepam is THE treatment standard. It is the only real one for these issues.
• Prophylactic lemprazole for recurrent insomnia doses are typically past the daily maximum. I see a psychiatrist about it in 3 weeks. The APA doesn't just agree, these are treatment standards. This was an acute episode, obviously, but it's considered a medical emergency.

I actually quit playing Warframe partly because their ability to accommodate people with vision problems is... really low. If you can't read the UI, which I can't, there's no way to scale it, increase text size, et cetera. It makes ability selection, knowing your actual HP and damage numbers, reading the minimap, etc basically impossible in a game where there's a surprising amount to juggle. I know it isn't the biggest thing ever, but these kinds of features are the difference between being able to actually play the game and struggling to do something I like with my friends.

Or there's RDR2, where I had a much easier time playing the game because they had an accessibility function where I could hold A instead of performing quicktime events. Tapping the same button repeatedly like that exacerbates my nerve pain, and just playing a video game otherwise doesn't cause quite the same issues. The difference between a game I can play and a game that I can't relies on features that aren't particularly costly to implement and can be added in as essentially an afterthought, and then it's kind of a crapshoot whether games I enjoy will have them.

I realize there are technically ways to accommodate myself: I could play a game without entirely knowing what's happening or what I'm doing, move my TV closer, et cetera. But shit, some stuff creates a positive and smooth experience for me and not having that stuff creates active barriers to my participation.

I guess just some thoughts I've been having lately in terms of disability access and what it actually means.

I've been fighting with disabilities for my entire life. A rotator cuff injury in my left shoulder, bilateral nerve pain in both arms, restless leg syndrome, a degenerative eye disease, refractory insomnia, severe ADHD, complex PTSD, treatment resistant depression, severe GERD, a hiatal hernia, medication-induced sinus tachycardia -- someone once asked me if there was any part of my body that works, and the answer is probably no.

I was told by two different doctors that I had sleep apnea. The polysomnography was supposed to just be clarification so that my insurance would pay for a BiPAP. Instead, it turns out that I don't have an extremely treatable, well-understood condition. They don't know what's wrong with me, they just know it's not sleep-disordered breathing.

I spent a year using a CPAP. I spent over $2,000 on 11 different masks and a mandibular advancement device. I saw 2 different sleep specialists. I was told- not that I'd get my life back, but that I had a condition whose treatment would let me have a mildly normal life*.* Right now I'm able to shower and brush my teeth twice a week on a good week; I can barely make medical appointments or leave the house for them. And nobody knows what's wrong besides that it's not the obvious suspects of chronic fatigue syndrome or insomnia (no post-exertional malaise, and the insomnia is now adequately treated).

I finally got to a point that I didn't think was possible: a good prognosis. A future where I had actual power over my life, where I had real choices that weren't just about health care. And now it's gone. There is nothing in its place. The entire future that I thought was in front of me, that I thought I was about to start building even if I had to start slowly, crumbled to dust in my hands.

And you know what the worst thing is? I'm not going to stop. I'm not going to accept the fatigue that makes me constantly miserable and dysfunctional. I found a new PCP with more availability than my previous one, who I couldn't see until October; I've got a cardiology appointment to make on Monday, and need a GI referral and probably a neurology referral when I see the new PCP in a few weeks.

Cases where the primary complaint is general fatigue don't usually get solved. 5% of people see real results from shotgun testing, and it can lead to false signals and misdiagnosis if you're not careful about the kinds of things being pursued and the questions being asked. People go to specialist after specialist and find nothing, and I'm setting myself up to be one of those people.

There is an empty and miserable future stretching in front of me, and I can't stop myself from trying to strategize my way out of it. I already know that I'm going to stay committed to recovery. What the hell is wrong with me? Plenty of people discontinue treatment, give up, and just start abusing substances. That's probably smarter than what I'm doing.

But nope, I'm setting up to get the extensive blood tests that I get every year because of my ridiculous number of health risks, with a few discriminatory blood tests like a Celiac serology panel just to rule out stuff that actually can be ruled out (vs stuff like testing for inflammation markers, which can easily be misleading data). It's fucking stupid.

I even did real data analysis here. Qualitative data coding, systems analysis including network analysis, structured hypothesis testing. There's two conditions that fit inclusion criteria (accurately describing my symptomology and presentation) and don't meet clear exclusion criteria (presentations and symptoms that don't fit my symptomology): post-viral fatigue syndrome (effectively unfalsifiable when I've been fatigued for 3 years; no clear inclusion or exclusion criteria, so no real diagnostic value), and Celiac. And Celiac disease is not a high-signal, strong possibility, it's just currently the only thing in the narrowed-down possibility space. (In other words, it's probably not Celiac, my PCP and a handful of specialists will end up investigating the fatigue and finding dead ends, and I'm wasting my time.).

I am fucking ridiculous.

I've dedicated my entire adult life to recovery, so that I could be at least a mildly functional person instead of a miserable and desperate one. I dedicated my entire childhood to survival, and that's not an exaggeration; my last therapist told me that I had an extraordinarily complex, extreme case of trauma over multiple decades.

First, my diagnosis was treatment resistant depression. So I did 11 types of talk therapy, tried over 3 dozen medications including a dopamine agonist, and did electroconvulsive therapy.

Then, I was diagnosed with severe ADHD and CPTSD, so I worked on that: I spent 2 years getting extensive cardiology testing so that I could get on a beta blocker so that I could take ADHD medication (stimulants induce sinus tachycardia but nobody can find any cardiac abnormalities). For the CPTSD, I did over 120 sessions of EMDR in a little over a year, then moved on to cognitive processing therapy, where my therapist asked me to do fewer worksheets because I was working too hard on it. I turned out to have refractory insomnia, so I did CBT-I and tried 9 medications before I found the routine and medication that worked (this is what I assumed was causing the fatigue, but it continued after the insomnia was adequately treated).

Then, I was diagnosed with sleep apnea. I was having morning headaches and debilitating fatigue, so it made sense. I spent a year trying 11 different CPAP masks and trialing a mandibular advancement device only to see zero progress. When I saw a second sleep doctor, they told me that they thought I had sleep apnea and ordered a polysomnography because the CPAP clearly wasn't working; we thought I needed a BiPAP. But guess what? That's right! I don't have sleep disordered breathing. Nobody knows what the actual fuck is wrong with me.

What is the goddamn point?

Why did I think I could be something other than a miserable, powerless mess? Why did I think that being talented and extraordinarily driven was enough? Why did I think I'd ever be happy, or have a career, or be anything but what I am -- a person with fatigue so debilitating that they're able to shower twice a week and brush their teeth 3 times a week if it's a particularly good week?

I was given a condition with a clear treatment and prognosis. Twice. This was the last major barrier to having some kind of an actual future, and it's gone. I'm still fatigued. I'm still depressed. I've been on disability benefits for 10 years, and my mom stole my benefits while I lived in a basement closet for several years when she was my rep payee. I've had to drop out of community college twice.

And you know what the most infuriating thing of all of this is? I'm fucking good. 200,000 people read the 4 essays that I wrote last year using strategic intelligence analysis. A literary editor called my genre fiction groundbreaking. 45,000 people read a 1,700 word essay that I wrote in under 45 minutes including line editing, when I'd had 5 hours of sleep; and I wrote it with no outline or preparation, I was just angry about something.

I'm someone who's dropped out of community college twice due to health issues, and I still became a highly skilled and effective person. I still became someone whose voice has value, who people listen to. I had the opportunity to at least try and build some kind of career, to move forward with my life in the directions that are currently unavailable, and it fucking collapsed on me. I don't have a clear and treatable condition, and that future I was building is now just... gone.

I'm not just someone who struggles to even leave the house, anymore: I'm someone who might never be able to do it regularly. I'm struggling just to make and keep up with medical appointments, and I can barely even go to those. I'm miserable all of the time, because the fatigue is draining away everything that makes me a person, and what's left is this pointless goddamn shell.

And the worst thing is, I know myself. I am still naive enough that I'm not going to stop trying. I'll see my PCP and get blood testing done, I'll follow up with cardiologist and GI and neurology consults; fatigue is smoke, and I'll try to find the fire. (Because this level of fatigue is likely caused by an underlying etiology which should produce additional symptoms elsewhere, assuming the issue isn't something functionally unfalsifiable like a post-viral syndrome.). I'll never stop fighting for opportunity and recovery. It's a total fucking waste of my time, and I still changed my PCP to someone with better availability and started lining up appointments.

I was never going to be healthy, or even healthy-ish. I was never going to be happy. I was never going to find out even half of what I'm capable of when my effort and energy aren't entirely taken up by seemingly random health concerns. It was all just a waste of my time.

Meanwhile, other people get to live their own lives: my fiancé and I are poly, and he's got a girlfriend despite having his own debilitating health issues (because even someone with suspected CFS is doing better than me). My sister just got promoted. His sister is applying to Master's programs. And I'm just... stuck.

If it gets better, then how come nothing touches my depression, including ADHD medication and not having PTSD anymore? If it gets better, then why did I develop debilitating fatigue 3 years ago that nobody can treat or identify?

Before someone asks, no, it's not CFS: there's no post-exertional malaise. It's not a drug side effect: onset timelines and A/B testing both make that very clear. I've been able to narrow down possibilities to Celiac disease (based on low-confidence signals, since practically everything is a symptom of Celiac disease), and post-viral fatigue syndrome (which does not have clear inclusion or exclusion criteria, and after 3 years of fatigue I can't exactly point to some specific infection that caused it). The obvious has already been ruled out, because after 3 years of fatigue I didn't magically become a goddamn moron.

I've dedicated my entire adult life to recovery, so that I could be at least a mildly functional person instead of a miserable and desperate one. I dedicated my entire childhood to survival, and that's not an exaggeration; my last therapist told me that I had an extraordinarily complex, extreme case of trauma over multiple decades.

First, my diagnosis was treatment resistant depression. So I did 11 types of talk therapy, tried over 3 dozen medications including a dopamine agonist, and did electroconvulsive therapy.

Then, I was diagnosed with severe ADHD and CPTSD, so I worked on that: I spent 2 years getting extensive cardiology testing so that I could get on a beta blocker so that I could take ADHD medication (stimulants induce sinus tachycardia but nobody can find any cardiac abnormalities). For the CPTSD, I did over 120 sessions of EMDR in a little over a year, then moved on to cognitive processing therapy, where my therapist asked me to do fewer worksheets because I was working too hard on it. I turned out to have refractory insomnia, so I did CBT-I and tried 9 medications before I found the routine and medication that worked (this is what I assumed was causing the fatigue, but it continued after the insomnia was adequately treated).

Then, I was diagnosed with sleep apnea. I was having morning headaches and debilitating fatigue, so it made sense. I spent a year trying 11 different CPAP masks and trialing a mandibular advancement device only to see zero progress. When I saw a second sleep doctor, they told me that they thought I had sleep apnea and ordered a polysomnography because the CPAP clearly wasn't working; we thought I needed a BiPAP. But guess what? That's right! I don't have sleep disordered breathing. Nobody knows what the actual fuck is wrong with me.

What is the goddamn point?

Why did I think I could be something other than a miserable, powerless mess? Why did I think that being talented and extraordinarily driven was enough? Why did I think I'd ever be happy, or have a career, or be anything but what I am -- a person with fatigue so debilitating that they're able to shower twice a week and brush their teeth 3 times a week if it's a particularly good week?

I was given a condition with a clear treatment and prognosis. Twice. This was the last major barrier to having some kind of an actual future, and it's gone. I'm still fatigued. I'm still depressed. I've been on disability benefits for 10 years, and my mom stole my benefits while I lived in a basement closet for several years when she was my rep payee. I've had to drop out of community college twice.

And you know what the most infuriating thing of all of this is? I'm fucking good. 200,000 people read the 4 essays that I wrote last year using strategic intelligence analysis. A literary editor called my genre fiction groundbreaking. 45,000 people read a 1,700 word essay that I wrote in under 45 minutes including line editing, when I'd had 5 hours of sleep; and I wrote it with no outline or preparation, I was just angry about something.

I'm someone who's dropped out of community college twice due to health issues, and I still became a highly skilled and effective person. I still became someone whose voice has value, who people listen to. I had the opportunity to at least try and build some kind of career, to move forward with my life in the directions that are currently unavailable, and it fucking collapsed on me. I don't have a clear and treatable condition, and that future I was building is now just... gone.

I'm not just someone who struggles to even leave the house, anymore: I'm someone who might never be able to do it regularly. I'm struggling just to make and keep up with medical appointments, and I can barely even go to those. I'm miserable all of the time, because the fatigue is draining away everything that makes me a person, and what's left is this pointless goddamn shell.

And the worst thing is, I know myself. I am still naive enough that I'm not going to stop trying. I'll see my PCP and get blood testing done, I'll follow up with cardiologist and GI and neurology consults; fatigue is smoke, and I'll try to find the fire. (Because this level of fatigue is likely caused by an underlying etiology which should produce additional symptoms elsewhere, assuming the issue isn't something functionally unfalsifiable like a post-viral syndrome.). I'll never stop fighting for opportunity and recovery. It's a total fucking waste of my time, and I still changed my PCP to someone with better availability and started lining up appointments.

I was never going to be healthy, or even healthy-ish. I was never going to be happy. I was never going to find out even half of what I'm capable of when my effort and energy aren't entirely taken up by seemingly random health concerns. It was all just a waste of my time.

Meanwhile, other people get to live their own lives: my fiancé and I are poly, and he's got a girlfriend despite having his own debilitating health issues (because even someone with suspected CFS is doing better than me). My sister just got promoted. His sister is applying to Master's programs. And I'm just... stuck.

If it gets better, then how come nothing touches my depression, including ADHD medication and not having PTSD anymore? If it gets better, then why did I develop debilitating fatigue 3 years ago that nobody can treat or identify?

Before someone asks, no, it's not CFS: there's no post-exertional malaise. It's not a drug side effect: onset timelines and A/B testing both make that very clear. I've been able to narrow down possibilities to Celiac disease (based on low-confidence signals, since practically everything is a symptom of Celiac disease), and post-viral fatigue syndrome (which does not have clear inclusion or exclusion criteria, and after 3 years of fatigue I can't exactly point to some specific infection that caused it). The obvious has already been ruled out, because after 3 years of fatigue I didn't magically become a goddamn moron.

I'm 32, white, male, 5'6", 132lb, and American. I was born extremely prematurely (26 weeks), with an extremely low birth weight. I do not drink or smoke: no cannabis, no alcohol, no nicotine.

I tested positive for sleep apnea last year with an at-home test. Then my new sleep doctor ordered a polysomnography (thinking that the issue was likely still pulmonary), and the PSG was negative for any clinical indications. So now there's no clear indication for what's causing the fatigue that I've had for 3 years.

Sorry, this post is really long. I tried to break it up into sections for easy skimming. I've been approaching this from my perspective as an analyst, but my lack of medical training makes it hard to differentiate signal from noise.

Background/Presentation:

I've been able to shower twice a week if it's a good week. Brushing my teeth every other day is a real victory. I am struggling with the most basic, essential activities of daily living. Rest does not improve it; sleep does not improve it. I go to bed exhausted, I wake up exhausted. I kinda just watch TV all day, because there's nothing else I really *can* do.

Just for clarification's sake, I'm not sleepy, I'm fatigued. I'm tired, but my Epworth sleepiness scale is 6. I get enough sleep every night (7.5-8 hours), I don't nap or doze off, and hypersomnia is not on my list of possible problems. I don't experience post-exertional malaise, so the issue doesn't meet criteria for CFS. The fatigue began as a distinct change and has not tracked the severity of my depressive or PTSD symptoms (my PTSD is now subclinical, but the fatigue is the same). I haven't noticed any increase in muscle weakness. I'd say it effects my ability to think clearly, but not in any way that isn't explained by being tired all the time. The fatigue is more-or-less the same all the time; Concerta and caffeine lift it just a little, but I'm still not functioning well at all.

PSG: AHI 1.3/hr, supine AHI 6.1 during approximately 60 minutes supine, non-supine AHI 0.6, REM RDI 8.1, N3 4.9%, no PLMs. My sleep physician interpreted it as negative for clinically significant sleep-disordered breathing. The fatigue started about 3 years ago, but I don't remember exactly when: however, I did find that I suddenly stopped texting people nearly as much in the second half of 2023, stopped calling people on the phone, and quit other activities that I find energetically or cognitively demanding (I don't write anymore, don't have long conversations, don't leave the house, don't play multiplayer video games).

Possible Complicating/Clarifying Factors:

I've got two health issues beyond the fatigue which remain undiagnosed: a headache every morning that I've had for 2 years, and nerve pain in both my arms running down the median nerve.

Headache: The headache starts out moderate in intensity (it is not a migraine, I don't think), stays the same for the first 3 hours of the day, and gets gradually better over the next 6 hours after that. Position doesn't seem to change it. Tylenol helps, but only a little. It's been going on for about 2 years. It's not keyed to the time of day; it specifically seems keyed to when I wake up, whether it's 6am or noon. (I've done some A/B testing.).

Bilateral Nerve Pain: The pain runs down the median nerve, from the top of my forearm to the tips of my fingers. It's a shooting, throbbing pain: no burning, numbness, or pins-and-needles. The pain is moderate in intensity, but it's localized. If I hold my phone for too long, it'll hurt my fingers and a section of my palm. If I carry something heavy, it'll show up in my arms. It takes 6-12 hours to show up, but doesn't wake me from sleep (probably because I take gabapentin before bed). It started in my left arm in my mid teens, then showed up in my right arm 4 years ago; the onset was sudden. Stuff like pinching my fingers, pressing down on spray bottles, etc can also exacerbate it. A nerve conduction study and x-ray were negative (nerve conduction started at the base of my neck, so I'd say it was thorough).

Weight Loss Concerns: I've lost 32lb over the last 3 years. It was intentional to lower my triglycerides and LDL (triglycerides went from 380 to 160, LDL went from 280 to 230)- at first. But the last 16lb or so wasn't intentional at all. It's been harder to manage the impact that stimulants have on my appetite with the fatigue. I went off the stimulants for 18 months, and that the fatigue started within that period (about 12 months following discontinuation).

GI Concerns: I take 8mg loperamide about twice a week due to diarrhea that seems to be triggered by extreme lactose intolerance (90,000 units of lactase don't always do the job but do vastly lower digestive discomfort), sugar, carbs, and soy. But I also have avoidant-restrictive food intake disorder that's still exacerbated by some issues from trauma, so that's also just a description of my diet. I wouldn't characterize the loose stool and diarrhea as particularly greasy or watery. I don't have blood in my stool, or belly pain or cramping; it is both consistent and persistent, rather than episodic.

Blood Pressure/Orthostatic Concerns: About 3-5 times a week, I get dizzy when I stand up; I'd describe the sensation as pleasant. But I spent about 2 weeks recording my heart rate and blood pressure in a journal, and it was fine both before and after the Nadolol. Before I was on Nadolol, my resting heart rate without caffeine or stimulants was between 95 and 105, but my cardiologist didn't think this by itself was a cause for concern.

Rotator Cuff Injury: Chronic pain in my right shoulder that began as intermittent in 2020, and became constant in 2021. I did 12 weeks of physical therapy for it in 2024, but despite following instructions to the letter, showing up to every appointment, etc, I didn't see any improvement whatsoever. X-ray and MRI were both negative. There is no clear cause: it wasn't an athletic or traumatic injury.

Medical Testing & Monitoring:

I've got high intraocular pressure (22-25) and enlarged cups, but my opthalmologist doesn't seem too concerned. I get an annual visual field test but so far have no issues.

I've got no nutritional deficiencies; nothing showed up on thyroid levels or androgenic hormone testing; my A1C was fine; I was negative for STDs ranging from HIV to syphilis. A CBC and comprehensive metabolic panel showed nothing (vitamin D, B12, and folate levels are all normal). I had a ferritin level of 470 last year and need to get it retested, but it'd fallen to 430 a few months later when I discontinued an iron supplement, and surrounding labs (iron saturation, etc) came up normal. I get all of this tested annually, but it's been a year since my last physical.

I had an upper endoscopy last year which revealed a hiatal hernia and some inflammation in my stomach and esophagus. I've also had an x-ray with contrast on my esophagus.

I have not received testing for Celiac, or had my CRP or ESR tested.

I've worn a holter monitor for a 48 hour test, had 2 EKGs, a cardiac echo, and a cardiac stress test. (No abnormalities.).

Diagnoses & Treatments:

I have severe GERD, a small hiatal hernia, a rotator cuff injury, nerve pain in both arms (neuralgia, not neuropathy), restless leg syndrome, retinopathy of prematurity (stage 2), sinus tachycardia (caused by ADHD meds), combined type ADHD, level 1 support needs autism, and treatment resistant depression. 

In the morning, I take 300mg Wellbutrin XL, 36mg Concerta, 40mg Omeprazole, and a multivitamin; and 200mg caffeine, BID (once at 9am, once at 2pm). At 11pm every night, I take 10mg Nadolol, 300mg Gabapentin, 50mg Quviviq, and 40mg Famotidine.

The fatigue predates all of these medications; the caffeine and Concerta and Quviviq can't be causing the fatigue, because I already had it for years when I started taking them. (Side note, I need to make an appointment to consult about a fundoplication; my doctors do not like the Omeprazole and Famotidine prescribed together long term, and I don't disagree.).

The next step is to narrow the possibility space:

• What features of this presentation would you consider most diagnostically significant, as opposed to incidental or likely red herrings?
• Which part of this case would most change a differential if it were clarified further? Are there important questions or considerations that I'm not asking?
• Are there plausible causes of severe non-somnolent fatigue that are commonly missed after normal basic labs, cardiac testing, and a negative PSG?

(Just to be clear, I welcome any other input anyone might have beyond these questions.).

I'm able to shower twice a week on a good week. I can't even manage to brush my teeth every other day. I can't focus, because I'm so tired. It's like the fatigue has dragged everything out of me that makes me myself, and left this miserable shell in the space I used to take up. I wake up exhausted and in pain every morning, and it never gets better. I don't get to rest anymore.

My symptoms are fatigue (not sleepiness), and headaches in the morning that don't seem to respond strongly to Tylenol. That's it. You know what that is from a diagnosed perspective? Nothing.

The very first thing that you'd do here is try to narrow the possibility space: you look for identifying features, differentiating information. Symptom presentation, the circumstances of onset, things that make your symptoms mean something. But these symptoms tell me nothing. The one plausible cause of them was just ruled out, because it's not sleep apnea. I've looked at my labs, my life events surrounding symptom onset, possible confounding factors like other symptoms or issues that may be associated with this problem, and even possible conditions that could explain the fatigue. Nothing points anywhere, and no conditions clearly fit.

There isn't a clear path forward here: gunshot lab testing for generic fatigue has a 5% success rate. My nutritional, hormone, etc labs all come back fine (including kidney, liver, and thyroid function) and I have over 50 blood and urine tests performed every year because I was born extremely prematurely and have to stay on top of any issues. So the problem isn't that there's an obvious issue being overlooked. It's that the obvious issues were ruled out, and the process that would normally clarify the number of remaining possibilities pointed nowhere.

Since Gregory House isn't real and nobody in medicine seems to give all that much of a fuck about my fatigue, this is really excellent news. I'm not really sure what to even do next. I guess the next step is to see if my PCP has any ideas, but my sleep doctor was also an internal medicine specialist, so her total lack of ideas doesn't exactly light me up with optimism.

I'm just... tired of this. I'm sure I'll figure out some kind of next steps, but why the actual fuck does this have to be so hard? Why does it seem like at every turn here, I'm the only one actually trying to figure out what's happening, even when there's a doctor ostensibly in the room with me? Fuck.

I won't let this ruin my life. Fortunately for me, it's doing it anyway. I get my 7th major health issue addressed just in time to have the 8th one show up as undiagnosed fatigue, so it's like a special kind of treadmill where I never get to actually win, recover, or be a functioning person.

It's in-person, I'm not really sure what to expect, and the results are really high impact for me. Either it'll explain why I don't respond to using a regular CPAP (my sleep doctor thinks I have central sleep apnea), or I'll have no idea what is causing my debilitating fatigue, brain fog, and headaches, or what to do next.

This shit is ruining my life. Like, these specific symptoms are incredibly debilitating even though I tested for mild sleep apnea using an at-home kit last year (it was basically just a pulse ox that I put on my thumb), but I'm incredibly tired all the time and I have headaches all the time, pretty much no matter what I do. I'm already on disability benefits, so in a sense that's great since I'm only able to shower once per week right now because of, well, all of this. Much less do anything else with my time / life.

So either I get answers and get treatment that's likely to actually work, or I walk away with no answers beyond "this isn't sleep apnea" and I still find myself super anxious leading up to the appointment. It's very unhelpful.

Yesterday, I made a very brief joke about my fiancé and his best friend having sex, because his friend is incredibly straight and it was kinda funny. His grandma started insisting that "I'm the only man for my fiancé" and then spent the rest of the conversation randomly bringing it up. I have approximately 0 anxiety over my fiancé fucking someone else, lmao (we're in an open relationship).

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She once told me that she visited the 9/11 museum, and it felt "too personal" because, on some kind of spiritual level, the museum is about her. We live in Los Angeles. She's spent her entire life here. So... Um, how?

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I accidentally crushed a Xanax tablet by placing a water bottle on it (I'm not the most observant person, lmao) and we had to toss the Xanax powder so that she didn't literally snort it in front of me. She has 4mg of Xanax prescribed per day, and this wasn't even her Xanax. (She takes about half of that and has an enormous stash of the stuff.).

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She once told me that she refuses to wear a CPAP mask for her sleep apnea, because it makes her feel ugly. While she's asleep. No one has ever told me that they were sleep-ugly before! Even more confusingly, she lives alone, so who is gonna see her when she's ugly and asleep? Is her dog silently judging her appearance?

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She has osteoporosis and has broken her back 3 times. She was addicted to meth for over a decade. She refuses to use a walker or a cane. How is this woman both so confusing and still alive?! Lol.

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I've been taking 40mg Omeprazole and 40mg Famotidine daily for 3 years, plus using calcium chews as needed. The fact that this still results in frequent breakthrough symptoms (and the medication stack itself) has been really freaking out my GI specialist and my PCP, and I'm arranging a referral for a fundoplication; but of course during this process, I have a hoarse voice, I'm coughing a lot, and my throat is ridiculously irritated.

I added Reflux Raft (a weirdly specific product) to my list of things to use. I stopped drinking anything but water. I made sure I was using my wedge pillow at night. I stopped leaning really far back when I sit down on our oversized couch. I'm not sure what else there is to do unless I feel like seeing if I can get a script for viscous lidocaine. I guess I could take ibuprofen to try and reduce swelling, but since that can cause issues with GERD, I'm very hesitant; though I might add dextromethorphan for the coughing.

Idunno, man. This shit really sucks. Breakthrough symptoms that are this bad very rarely happen to me because, well, my body is a pharmacy (not a temple). Talking seems to make the throat irritation worse, but I can't exactly just not do that for the next several days or weeks straight.

Obviously the best solution is to go back in time and stop drinking root beer, but unfortunately the best I can do is stop right now. My root beer days might be over, lol. Carbonation plus fundoplication is bad news; carbonation plus GERD is bad news. My esophagus is a damned traitor.

I can't keep doing this. I have a hiatal hernia caused by severe GERD. I take 40mg Omeprazole and 40mg famotidine every day, plus as-needed calcium chews. And it still doesn't always work. I'm having a severe flare-up right now and mostly just trying to stay hydrated and eat foods that are, well, safer. (Pretty much anything will exacerbate it for me on the rare occasions that this happens, but some stuff more than others.). My voice is hoarse, I've got a throbbing headache, it sucks.

And then of course, I've gotta actually find a surgeon. My gastroenterologist referred me to 2 people, and 1 of them doesn't even take my insurance. The other one is a cardiothoracic surgeon specializing in minimally invasive surgery who they say 'does fundoplications'. Awesome, let's go! But then I have to have the actual energy to call their office and deal with the emotional fallout if they tell me to fuck off, and that's just... a lot. Then I got a list of other relevant surgeon who are in-network with my PPO, so that's at least something.

But, shit. I'm tired of being in pain. I'm tired of eating too much or too little, or too often or not often enough, simultaneously causing problems. I'm tired of my PCP having a heart attack from the combination of drugs that I can't stop taking if I want to avoid throat cancer that might already be inevitable.

I'm also so fucking nervous about a surgery that means I can't eat solid food for 8 weeks afterwards, I've got no idea how long it'll take me to actually get the surgery once I get an appointment with a surgeon, and I'm both hoping to God that they won't need further testing and knowing that if I were a doctor, a 12 month old endoscopy wouldn't be suitable information.

Everything about this sucks. I feel like absolute shit. I thought I could put this off until I was finished dealing with my sleep apnea issues, but that's lasted a year longer than it reasonably should have (long story short, I've probably got central sleep apnea and I'm doing an in person sleep study in July). So the GERD Is fucking up my life, and the GERD and the CSA are a fun combination that just makes it so hard to actually arrange the care I need.

It's just all such exhausting bullshit.

I spent thousands of dollars on 11 different masks and a mandibular advancement device, and none of it actually... worked. My sleep medicine doctor thinks that I've got CSA due to the at-home sleep study showing mild apneas but severe symptoms, and we finally got a polysomnography preauthorized and scheduled.

It's just so shitty and frustrating that I spent a year not knowing what was happening at all, and another year trying stuff that ultimately didn't help, and now I've gotta wait 5 more weeks just to hopefully figure out what exactly the problem is.

I've got fatigue, headaches, and brain fog all the time. It's incredibly debilitating to the point where I'm only even able to shower 1-2 times a week. It's just been slowly getting worse for the last 2-3 years. Caffeine, ADHD meds, Tylenol, etc doesn't even touch it anymore. I went from struggling with PTSD and ADHD to having both of those things managed (I technically don't have PTSD anymore), but now I've got this to deal with instead.

I'm tired of being too tired to do even basic daily functioning. I'm tired of my life being stuck with absolutely zero momentum. I'm tired of my body and brain constantly finding new reasons to make sure that I don't have a career, can't build new relationships, can't learn new skills. And I think I might shank the next person who tells me to use a CPAP, because *I did that.*

Symptom presentation isn't consistent with anything but CSA, apparently. It doesn't fit chronic fatigue syndrome or really anything else. My sleep doctor is dual specialized in internal medicine and sleep medicine, so I'd be surprised if she missed some enormous variable here.

This just sucks. I'm tired of it. It's hard to believe that in depth, more accurate testing can make a difference even when I've got every reason to think that it will. It's not like this isn't extremely treatable if it's sleep apnea of some kind, which it should be. It's just exhausting trying all of this stuff and seeing it not work, as part of 16 years of disability, while everyone around me gets to live their lives and do new things and I can't really do fucking anything.

Idunno if any of this is relatable in any way, but fuck it. Might as well post, I guess.

I don't care where you live, or anything, people on here just mention location a lot! I'm a talkative dude who's bored and likes texting.

I've got autism and ADHD, and am technically considered recovered from CPTSD. I'm on disability benefits (I don't work), partly because of central sleep apnea (it's a bitch). I play 3 Pathfinder 1E games a week with my fiancé, write short stories and nonfiction essays, watch too much TV, and play too many video games (that I'm terrible at).

I'm a Zen Buddhist and a democratic socialist whose nonfiction essays are usually about authoritarianism or sociocultural issues. I'm a giant nerd who loves science fiction and really enjoys systems analysis, lol.

Feel free to say hi! I usually prefer to move to discord eventually, just fyi.

I meant that I've been tortured. Not that I've had unpleasant experiences with dentists that I didn't like. Not that I've got issues with drill noises and needles. Torture. It's not a euphemism, it's a very real and literal experience.

It was a new dentist at a clinic I've been going to for sedated dentistry for a while now. It's the only way that I can go to the dentist. I've had over a 70% reduction in PTSD symptom severity, but I'm still not able to tolerate dental work. It's getting easier, but it's a work in progress. Today was the closest I've come to not having a panic attack in the dentist's office, so, y'know, woohoo.

But, Jesus fucking Christ. I realize that a goddamn dentist isn't a trauma therapist. But is it really that fucking hard not to try to lighten the mood with a little chuckle and a comment on how a lot of people don't like dentists after asking why I need nitrous?

(The reason why does matter toward how they accommodate you and what they expect. It's a fairly standard question for this kind of thing.).

I'm 32 years old; I'm gay, and engaged to my partner of 5 years; I'm on SSDI disability benefits for a ridiculous number of chronic health conditions; I live in suburban SoCal; and I'm a Zen Buddhist, and a writer.

I don't work (it's boring). I'm trying to get my insurance to pay for followup testing for central sleep apnea (it's infuriating). My hobbies include political analysis (when my brain works, which isn't often), video games (I play them a lot, but I suck, lmao) furry nonsense (I'm a dog on the internet!), and writing very long comments on Reddit. I've also got ADHD and autism.

I'm happy to move to telegram or discord if we get along!

I guess that's me! Feel free to say hi.

(Woof.)

Man, it's just tiring. Some treatments are better than others; and much like in other areas of health care, some things aren't even real treatments -- even the things you like! If I'm "criticizing your healing journey" by pointing out scientific facts and expert consensus, then maybe your healing journey should be criticized. Maybe the things that feel validating aren't always the things that are truthful or helpful.

There are three first line therapies for trauma; four if you count one that's mostly available in the UK. Cognitive Processing Therapy (CPT), Cognitive Therapy for PTSD (CT-PTSD -- the UK one), Prolonged Exposure therapy (PE), and EMDR therapy. These are recommended for trauma by the WHO, ISTSS, NICE, APA, and (US) VA. The first three also recommend them for CPTSD, with pretty minor adaptations (many of which clinicians have been using on at least a de facto basis for decades).

These are the treatments with decades of robust data showing an extremely high degree of treatment efficacy, and they're what experts recommend (in evidence based treatment recommendations) for trauma as well. They are called first line treatments, which is *literally* when a health organization says "try this before you try other things." These are especially robust considering that everything I listed besides CT-PTSD is recommended to treat trauma by all 5 of the organizations I named.

The body doesn't keep the score, because polyvagal theory isn't real; I can't say it's discredited, because it was never credible. Pete Walker isn't a reliable source on trauma, and in fact he often just makes shit up (the fawn response, emotional flashbacks as discrete from regular flashbacks, etc).

Trauma communities online absolutely love complete bullshit. Somatic experiencing, internal family systems, and schema therapy have been around for over 30 years... and they don't even make second line treatment recommendations for trauma. It's because there isn't strong evidence that they actually work. If you do psychodynamic therapy or dialectical behavioral therapy, then you might be wasting your time, but at least they're second line treatments, not less robust than acupuncture.

And of course whenever I say this, I get the dumbest pushback possible:

*"Nothing is 100% effective for 100% of people!"* This doesn't mean that every possible option is indicated to treat a given condition, or that all options are equal.

*"Everyone's healing journey is different!"* Yeah, great, but I'm talking about quantifiable recovery, not pseudo-spiritual, super personal journeys. You are a person.

*"What matters isn't the modality, it's about your relationship with your therapist!"* This is just not true when it comes to treating severe mental health conditions like trauma or personality disorders. Modality matters. The therapeutic alliance also matters, but that doesn't mean every option is equal.

*"Every therapy has a chance that it'll work, so it doesn't matter what you choose!"* The payment is in opportunity cost. If you might see more recovery, faster recovery, or more robust recovery from PE or CPT, then time spent on hypnosis or somatic experiencing is time that you're suffering unnecessarily; and the consequences of prolonged PTSD can be worse than just suffering. People can seriously get hurt.

*"There are some instances where these therapies aren't indicated!"* Yeah, that's true, but if you're in a dangerous situation then therapy isn't a solution, and if you're having a mental health crisis then you need to go to the emergency room.

*"Just because it worked for you doesn't mean it worked for everyone!"* This was not my claim.

*"There are some uses for these bullshit therapies!"* Great. Somatic experiencing can be an adjunct therapy because it's a grounding exercise. Y'know what's a better adjunct therapy? CBT, DBT, psychodynamic therapy -- really anything that's been shown to actually help people will work if all you're doing is supplying someone with adaptive coping skills.

*"You're invalidating my experience!"* If you've been doing internal family systems for 2 years and still having clinically significant trauma symptoms, then I'm not the one invalidating your experience. Reality is doing that. If your therapist isn't tracking your PTSD severity scoring, or having you track it yourself, they're violating both treatment guidelines and ethical standards (and it's not my fault if they're bad at their job, either).

*"You're condescending and rigid!"* This isn't my usual tone when trying to inform people of these very basic and essential facts. That being said, it also doesn't seem to matter: whether if I'm gentle or I'm coarse, I still get threatened with grievous bodily harm, called a terrible person, et cetera. I can take the time to define epistemology up front, maintain that I'm not trying to invalidate anyone's treatment experiences, etc, and it doesn't actually change jack shit.

*"It's triggering / destabilizing to hear that the treatment I'm pursuing is not indicated, actively contraindicated, or based on popularized misinformation!"* Well then it sure isn't working.

*"My therapist says I need months or years of stabilization before we try anything that actually works!"* Your therapist is ignoring treatment guidelines, which actually say the opposite of this.

Ugh, I'm just tired of it. I've made so much genuine, real progress, but there are way too many calendar events every year that are still extremely difficult. I feel flooded with worthlessness, despair and anxiety, and it sucks.

I might need to do more exposure therapy. I guess it's something to talk to my therapist about. We worked through >!being tortured!< using exposure, and it really helped, but there's still the 8 months that I spent in a cold, dark basement closet while catatonic, and I'm not sure that CPT worksheets are really gonna do what I need to close that door.

I'm starting to wonder if it's time to go look at another type of therapy. Again. NICE recommends narrative therapy for residual self organization issues, which are most of my remaining symptoms. But maybe the exposure therapy or some EMDR first? Idunno.

I'm just tired of this. The CPTSD is perfectly fine and manageable 99% of the time, until there's a major holiday or mother's day or father's day or the anniversary of my dad's death or my own birthday. And it's *really* hard. I wish I could explain what the whole catatonia basement thing was like, but I can't. I think that and the 11 years of false imprisonment may need more than CPT can give them, but maybe that's where the whole narrative therapy meaning-making thing comes in.

I know it sounds stupid when I'm talking about being in this pit of despair, worthlessness, and anxiety, but I've made so much progress that I am certain that I won't have to be weighed down like this for the rest of my life. I just wish there was a clearer way forward.

It just really, really sucks right now to be in that emotional pit. Fuck.

I was >!falsely imprisoned and extremely educationally neglected!< between ages 6 and 15. My mom >!literally tortured and then starved me!< as a response to having symptoms of autism. I was blamed for being lazy because I have severe dysgraphia and dyscalculia (not what laziness looks like). I drowned when I was 7. I was >!sexually assaulted as a hate crime!< when I was 13. I've been >!choked, beaten, and physically threatened!<. I spent between ages 15 and 26 living in a basement closet with no door, but the basement also didn't have heat, and had mushrooms growing out of the carpeting. I literally entered high school with between a third and fifth grade education. I spent 8 months straight in a catatonic stupor due to extreme medical neglect when I was 16. As an adult, I've been homeless 3 times, my mom was my rep payee and embezzled my disability benefits for 5 years, and my brothers moved over 2,000 miles to grift my (now) fiancé's family.

Then I did EMDR and CPT, and my PTSD severity score on the PCL-5 went from 68 (severe) to 25 (subclinical) over a 2 year period. Just in time for me to develop the central sleep apnea that's now ruining my life in its place. It's not like I'm free of issues with anxiety and self concept, but most of my PTSD issues are now relatively mild even if it'd take me a while to fully recover even if my stupid sleep apnea wasn't completely fucking things up, and of course it is. I'm barely able to shower twice a week, much less do CPT worksheets right now.

But please, feel free to tell me (someone who *has literally been tortured*) about how easy I must have it because therapy worked! It's not like I did over 150 EMDR sessions and at least as many CPT worksheets, dedicated significant time and energy to buddhist practices as a Zen practitioner, and basically just ran the therapy gamut and find myself still needing more therapy. I've had it really, really easy. Being disabled at age 32 with no work history is awesome and doesn't make the prospect of recovery to the point where I might be able to work stressful at all.

I'm tired. And stressed. And frustrated. I've got central sleep apnea, so I always have a headache and brain fog and fatigue. My insurance wants me to jump through some almost impossible hoops just to get the testing I need to get treated for the CSA. And trying to share with people that *you can in fact recover from this disorder* and that isn't actually a crazy expectation can be an extremely fucking frustrating experience.