u/SleepyRedRidingHood

My family has been trying to convince me to try to go to a TCM doctor but I'm reticent about it because it might mean traveling (I'm currently worsening to the severe end of moderate, so that would be a really bad idea) and I don't understand many of its principles, so I can't tell if I'm receiving good care or not and I don't like the idea of not understanding how different things might affect my body.

Does any of you have any experience with TCM regarding ME management/treatment?

I already have western doctors following my case and I'm (on a personal level) currently focusing on pacing and stabilising.

I'm not diagnosed yet but I'm completely convinced that I have ME.

My baseline symptoms are quite mild, but my capacity before hitting PEM is quite low. I'm housebound and sometimes bedbound because of PEM.

I keep trying to gaslight myself every day I'm not in PEM that I'm actually fine and being overly dramatic. But I know that if a healthy person suddenly woke up one day with my baseline symptoms would absolutely take the day off. I know that when healthy people in my life tell me that they've slept like shit and feel awful they feel significantly better than when I'm in my good days. I also know that if anyone described me what I'm going through I would never dismiss them and tell them they're being dramatic.

But I keep trying to prove that I'm being dramatic and keep hitting PEM unnecessarily because of that.

I feel so stupid.

I suppose it doesn't help not being diagnosed, but it's more of a mindset issue, so if I got diagnosed I would still do this kind of stuff.

I also keep doing more than I can because I feel guilty for not helping around the house even though everyone keeps helping me with everything. So when I feel good enough to help I try and then crash.

How do you deal with this? I still think I should try my best to help around but it's not helpful if I end up so bad I need even MORE help as a result of that. I don't know :(

I think I've started to decrease the amount of times I get PEM because of stupid things like this, so I think I'm already on the right track, but I'm still around half of the time in PEM and I'm scared of worsening further.

Edit (update): I got diagnosed!! :)

TW: self hitting & suicidal thoughts mentions

I've had meltdowns before where I end up screaming, crying, hitting myself, and my mind is on vacation so I barely remember what happened afterwards, but it happens very rarely. I would say that I mainly experience shutdowns. They usually last multiple days because I try to mask them and continue to do things despite the fact that it feels like my brain and body are slowly shutting down until it's absolutely impossible to ignore or continue, or I realise what is going on and allow myself to regulate.

In the last few days I've been thinking that maybe I was narrowing too much my definition and understanding of meltdowns.

Recently for multiple hours I get really really awful mood swings and start having extremely negative thoughts. It tends to be more on a depressive side and at some points I start having suicidal thoughts (even though I'm not suicidal and I'm very happy and grateful to be alive) and end up convincing myself that life isn't worth it, I'm the shittiest person alive, and that I would make everyone a favour if I disappeared (which again, it's not something I truly believe). Sometimes I get extremely angry at random things, and the next second I'm crying in the floor. In general, everything feels extremely heavy, horrible, and amplified to levels that are completely disproportionate. I can end up treating other people horribly, and I'm afraid to hurt others or myself in this state. When it happens I feel like I'm losing my mind and it's very scary.

I've identified it, so when it happens and I notice it, I usually try to interact the least I can with other people and just remind myself that nothing I'm thinking or believing in those moments is me and I just need to wait it out. When it finally ends I usually end up regretting or feeling ashamed of anything that has happened during that time.

I think that is some kind of meltdown??

I think it started only recently because I'm going through a lot physically, mentally, and emotionally (severe chronic illness), that has worsened significantly in the last few months.

I can't really think of what else it could be. My symptoms alone should not be provoking this, I don't remember being like this before, and my health decline is the main change I've experienced recently. People don't usually experience hours of extreme distress that can potentially harm themselves just because.

If you do think it's a meltdown or you experience this, how do you deal with this?

Sorry if this is a super obvious thing, I started realising that I'm autistic not too long ago, and I'm still trying to understand which things are a "I need to work on my personality" and which things are "I have a disability and I need to learn how to manage it as well as I can, but it's not my fault or a character fault".

Something that doesn't help is that I don't fully feel identified with a lot of autistic experiences (for example, I barely mask and if I don't feel comfortable or accepted I just try to become part of the background as much as possible) and that so many autistic experiences are mainly described from the lenses of NTs, and not how it feels like, so if the external presentation is slightly different, I can't tell if it's still the same thing anymore.

I haven't been diagnosed but at this point at least I'm 90% convinced that I have ME (I intend to bring it up in my next appointment that is finally coming after months of waiting), because the more symptoms I develop (after big crashes) the more it sounds like ME.

Context for question 1:

I would say my baseline is pretty chill. I usually can walk around the house fine (I get tired after some minutes standing up), and if I'm on a good day I can do things like washing the dishes or doing laundry (it happens 1-2 a week), I have a light headache all the time, and have overwhelming fatigue. I've been experiencing some random muscle and joint pain too but it's usually very light at my baseline.

I've been experiencing some sort of "light" crashes that peak 2-3 days after exertion (it might start after a few hours or the next day) (things like trying to study for 2 hours, washing my hair, going out). Depending on the crash I get a different mix of being tired after walking around 10 meters, be in so much pain I can barely sit up, be unable to use my phone because of light and movement sensitivity, get tachycardia at my resting HR, dizziness, etc. I've asked people close to me if they consider that a dramatic increase of symptoms because I don't think it's dramatic enough.

My big crashes make me be unable to be in any position that isn laying down for more than a few minutes for multiple days due to my fatigue and muscle weakness getting significantly worse + other symptoms, and I would call that dramatic, not the first kind of crash. But I feel that I'm putting the bar a bit too low. I can't tell.

It's true that the first kind of crash is the main reason why I'm failing all my classes at college, because I spend too much time being unwell after every time I try to study, sooo idk.

So, question 1: would you call the first thing PEM? or at least a very dramatic increase of symptoms? I'm kinda worried about this because I'm in this kind of crashes the majority of the time.

Question 2 (no context this time): What would you call mostly housebound? Like, how many times per unit of time? Or like, what percentage of time you should be at home?

Random thoughts:

I think I tend to minimise the impact it has on my life (I barely have a life at this point) because I've been sick for long enough to barely be able to remember how it was to feel normal, but then whenever I talk to someone for the first time about my health they think it's absolutely wild. But it's also true that my pain levels are pretty low so it's not THAT bad?

Sorry for how long this ended up being and thank you if you read it or tried to read it 🫶

Hi, my blood tests have been shifting from hypo to hyper for a bit over a year now and I'm still quite lost with new symptoms and knowing which ones can be attributed to what (my GP believes that I might have something that hasn't been studied/diagnosed, so I've been referred to a specialist. For now I'm waiting and trying to understand the situation as best as I can before my appointment).

As far as I know, tachycardia is extremely common in hyperthyroidism, but does it follow some kind of pattern? Does it come and go? If you are doing something more "taxing" (shower, going out, etc) it makes total sense for it to go up in the moment, but, does it raise your HR in general for days? Or is it usually the same for the same activities? Or is it higher or lower with the same activity randomly because it's coming and going?

I've been noticing that whenever I go out or wash my hair, my HR rises in general for multiple days (sometimes over a week) and I need to rest a lot until I eventually stop experiencing tachycardia at my resting HR. I usually can attribute my tachycardia to specific events, but it feels like almost anything can trigger at least a slight increase of symptoms, so I'm not confident about it at all lol.

There are probably a lot of people who are denied a formal evaluation because they're not disabled enough and can achieve things in life. However every achievement comes with a massive personal cost that can lead people to burnout, chronic illness, and many other stuff that actually end up being even more weight on the individual and on society.

I struggle to understand it even more when someone who is chronically ill and trying to get a diagnosis for their illness or help in general asks for a formal evaluation and gets denied given the fact that if your autistic you're way more likely to get a lot of chronic conditions and struggle to manage them more than if they were NT.

I know this happens due to a lack of resources, but only helping people after they get disabled to the point of having almost no autonomy only puts more pressure on the system in general.

I'm chronically ill and keep getting advised to do things that are really hard for me. Obviously, I try my best to follow those instructions, but I can only do so much. I keep getting told that I'm not trying hard enough and it's genuinely hurting me so much but I have no way to justify why it's hard for me. It kind of feels like being scolded and blamed for being disabled, then asking for help and being told that you should be able to cope because it's not such a big deal. (And this without even mentioning how socially isolating and vulnerable this can be)

I'm not diagnosed with mecfs but I've been thinking for a while that I might have mild mecfs.

I pace a lot, so I usually don't have really bad crashes. However, there are a lot of things that will trigger a slight increase of symptoms and make extra symptoms appear 36-48 hours after the exertion. It is usually pretty mild and I could totally push through, but if I do that I will certainly end up with a way bigger crash that fits quite well PEM's definition.

The symptoms I experience in this "pre-crash" aren't always the same. It can be increased muscle weakness, brain fog, headaches, pain in different parts of my body, stimuli intolerance (especially light and sound), tachycardia, orthostatic intolerance, etc. It feels quite random, tbh.

I haven't read about stuff like this, so I wanted to ask if people with mecfs experience this (or not).

I'm not sure if this is the best sub to ask this. I haven't been diagnosed with dysautonomia, and my only diagnosis (hypothyroidism) no longer applies and does not explain the majority of my symptoms, so I'm pretty much asking whoever could make some sense to ask.

Recently, my HR have been high very often. I'm currently in a flare and for the last week I've been waking up to a 100 resting heart rate, and whenever I do anything it goes up definitely more than it should.

The other day, I changed my position from laying down to sitting and my HR dropped from 105 to 67 or so, and eventually went up again to around 105. This is definitely not normal and the first time it happens to me. 67 is also below my resting HR from when I was healthy (around 75). I'm a bit scared since it happened after many days of increased HR.

My flare is almost over, so my HR is more or less normal now. Still, I'm worried that it might happen again, because every time something weird and new happened, it eventually repeated itself and became more normal.

(Btw, one of my doctors confirmed that my tachycardia is a sinus tachycardia.)

Should I be concerned about my HR dropping??

Subclinical hypothyroidism symptoms (if present) should be mild, but mine weren't at all. It was completely unsafe for me to go out on my own because of how bad my fatigue and weakness were.

After getting on levothyroxine, my health has improved a lot, but the fatigue never completely disappeared. I feel like my symptoms while taking the medication resemble mild mecfs, and it's a plausible explanation to my current symptoms given the timeline. I'm not sure if I do have it, I'm waiting for appointments and trying to prepare myself as much as possible in the meantime.

Does anyone know if mecfs can greatly amplify subclinical hypothyroidism symptoms? Especially those related to fatigue, weakness, cold intolerance, and brain fog.

Edit: I just randomly checked if my last blood test results are up already and why tf do I have a low TSH. I've been off medication for a month and a half and I've been feeling SO much worse. And somehow my TSH is even lower than when I had medication. I'm tired of this omg.