u/CeruleanShot

▲ 8 r/cfs

Hungover, poisoned feeling

As I'm stabilizing after a long crash, I feel like I'm noticing stuff that I was just too sick to notice before. Or maybe it's new, but probably not. It's more like, I've just been sick for so long that it all seemed normal, and now that I'm feeling a bit better different stuff is standing out.

Or maybe not, I don't know.

I'm waking up with a sort of hungover, poisoned feeling. It's better than how I was waking up before, feeling so bad I could cry. It's an improvement, but it's still weird and unpleasant. And I'm still wasting half the day trying to get myself to a place where I can do things and move and I really need to take care of stuff.

I'm taking NAC to support glutathione production because that's something I already have on hand and it's the only thing I can think of that can maybe help this. It's like having a hangover without the nausea or headache. I feel so fragile and weak and tired of this.

Keep fighting the good fight, friends. Thank you for being here with me on this journey, I am grateful for the company.

reddit.com
u/CeruleanShot — 4 days ago
▲ 94 r/cfs

First time out in nature in four years.

I went to the library today. They shut at 6pm and I'm still struggling in the morning and feeling better at night, so I went to a local forest preserve. I got to walk around slowly for 40 minutes and look at things, and then spend another hour lying in the grass. And I saw a family of trash pandas when I was getting ready to leave who were very curious and investigating things. And getting in little scuffles amongst themselves.

I realized when I was there that it's been about four years since I did anything like that. I just haven't had the surplus energy for something like that to be enjoyable or fun. It made me realize how much I've been struggling, and for how long. An hour at the forest preserve has been too much for me for a long time.

I'm still struggling to get my feet under me, but it feels good to be able to do something like this in a mindful way, and to actually feel like I have the juice in the tank to do it. To be able to do it without feeling like I'm pushing myself through it by brute force, through gritted teeth.

My cognitive symptoms are still kicking my ass sometimes, and I'm taking it super slow in increasing what I'm doing and listening to my body, but this feels really good, partly because of how easy it was. It didn't feel like a big deal, I felt like I had the energy to do it.

I'm posting these links in all sorts of comments, but honestly, really getting a handle on what pacing means and how to do it is making a world of difference to me. Moving really slowly has really helped me very gradually start to increase what I can do. It's been such a painful process, and I know that not everyone is able to do this. Whatever my subtype is, I seem to be able to stabilize and recover some of my baseline after a crash, and I know that's not true for everybody. But the past six months have been hell, and without help or practical support, really scary. And really spending some time to understand pacing has been a big help for me. That, and dextromethorphan. So, for what it's worth:

https://solvecfs.org/using-a-heart-rate-monitor-to-prevent-post-exertional-malaise-in-me-cfs/

[Pacing and how to exercise safely in Long Covid and ME/CFS: A Live Chat with Dr. Binita Kane and Professor Todd Davenport.](https://www.youtube.com/live/lFmmyuUZ0Gs?si=W01rai3knYiE4pi0)

[Micro-pacing for recovery, Dr Binita Kane talks to Robin McNelis.](https://www.youtube.com/live/TK-z-D91TIc?si=w3OdYfJNueQiSF9g)

[“Pacing: Power In Slowing Down" EmPOWER M.E. 2025](https://youtu.be/to9xPPuRM1o?si=RI3zSyixD8xj83yf)

[Safely exploring 'exercise' or movement when you have ME/CFS](https://youtu.be/Q-SnvBTMkH8?si=vr3zHKEjzqsfOYWg)

u/CeruleanShot — 6 days ago
▲ 11 r/cfs

Best PEM busters for the malaise part?

In this Jarred Younger video he was talking about the sickness response that happens as a result of neuroinflammation in a specific part of the brain.

I'm coming out of a long crash as many symptoms are improving, but I've got some stuff in my life I desperately need to take care of and I guess I've been pushing myself too hard. And accomplishing fucking nothing. But paying a price for it anyway, I'm back in this fucking malaise/sickness response. I feel so down. I can't even take care of myself or function.

Anyway, is there anything anyone can recommend for this? Dextromethorphan has been really helpful for me with neuro symptoms in general but doesn't seem to be hitting this at all, I just want to curl up in a ball and cry. Or shatter into dust and disappear. I dunno, it feels terrible but everything is also fine. I'm so sick but I'm also fine. I feel awful.

u/CeruleanShot — 8 days ago
▲ 4 r/cfs

TW: Broken Brain & Swearing

I'm out of rolling PEM and physically better, but mentally just feeling so fucking bad and struggling. I don't know what to do, I feel like I'm drowning. I'm just so fucking alone.

The harder I fight to get moving again the worse I feel but I don't have any choice. Things are pretty bad and I just don't know what to do. I should be grateful for the amount of time I'm able to be upright and moving around, I should be grateful for how much better my sleep has been, how much better I feel. Compared to where I was a couple of months ago I'm so much better. But I can't take care of myself, I have so much stuff to deal with and I'm just, broken. I feel so alone. I feel like I'm drowning.

I just feel so fucking bad, man.

reddit.com
u/CeruleanShot — 11 days ago
▲ 33 r/cfs

When I try to push myself to do cognitively difficult tasks, I crash emotionally

And I can't do them anyway, I just get more foggy headed, plus emotionally upset. It is very weird, it's like my brain turns into an over tired toddler who's wailing and screaming because it doesn't WANT to do the thing.

It's starting to feel like I have a brain injury. Things were so bad for the past year I couldn't see how bad they were, but now that I'm getting some stability, holy shit.

Anyway, just ranting. Don't really have anywhere else to say this.

reddit.com
u/CeruleanShot — 14 days ago
▲ 6 r/cfs

**Summary:**

I'm recovering from a lengthy crash. Physically I am improved and my baseline is increasing with pacing. Dextromethorphan (DXM) is helping with cognitive symptoms. But I am still really struggling with problem solving and taking care of tasks with cognitive elements. I am desperate to improve this, I have stuff in my life I really need to take care of my brain keeps shutting down.

**Full post:**

After spending half a year in a really scary crash, I've been able to stabilize. I'm still pacing, but by moving really slowly and resting frequently I've been able to get out of bed and leave the house more without triggering PEM. My orthostatic issues also seem to be improved for reasons that I don't understand, other than just, reduced neuroinflammation, I guess.

I've been taking dextromethorphan for months, and it has helped a lot. I was taking 15mg capsules three times a day for most of that time. I see recommendations to take it before activity to help prevent PEM, but it doesn't seem to work immediately like that for me. I have noticed benefits over time from taking it regularly.

I ran out a couple of weeks ago and thought it might be beneficial to take a break for a bit. After a couple of days off of it I *really* noticed a difference.

So I went back on, and I tried increasing the dose. Neuroinflammation researcher Jarred Younger recommends low dose DXM based off of animal studies. But I pulled up some studies on DXM for traumatic brain injuries off of PubMed and found a dosing range of 60mg-120mg/day in divided doses. I am now on 90mg/day.

It's a game changer. Is it working because it's reducing microglial activation and neuroinflammation? Is it helping because it's modulating glutamate? Something to do with acetylcholine? I have no idea, and I don't think the research is very clear on it, either, but this is really helping me a **lot** with cognition.

But I'm still struggling so much to actually take care of stuff and get things done. My brain just shuts down. I try to do things, I try to address a problem, it literally just stops thinking and shuts everything down. I am having such a hard time actually DOING anything.

I downloaded a brain games app and started playing a math game, where you rapidly do mental addition or subtraction with a string of numbers. I was getting 100% on it until it was too much, too fast, and my brain just stopped. It wouldn't do it any more. Tried playing a different math game right after it, without a time limit, and my brain wouldn't add the numbers together.

That is what's happening in general - my brain hits a limit with doing something and just shuts it down.

This is a big, big problem. My life is actually on fire right now and I really need to take care of stuff. I have a lot of stuff that I desperately need to take care of. And I can't get my brain to engage with it, the way it shuts down is really overwhelming.

In some ways my cognition is okay. I am finding it much easier to read, process information, form thoughts, use words. But I have such a hard time doing anything that's "hard."

I don't know, I guess I'm just curious if anyone has any ideas or thoughts.

reddit.com
u/CeruleanShot — 15 days ago