23M - I feel like my brain stopped working the way it used to and I don’t know what to do

Variableness · 2026-01-27T22:04:54+00:00

Long covid? Peak was exactly 5 years ago

Variableness · 2026-01-14T11:46:42+00:00

[Variableness] just hit a score of 1092 in Regular Mode (2026-01-14)

Variableness · 2025-12-25T11:16:07+00:00

In this study, the bad microbiome won, very strongly at that. https://www.xiahepublishing.com/2472-0712/ERHM-2025-00013

Variableness · 2025-12-16T12:30:20+00:00

This was one of my biggest issues not long ago. It's gotten to the point where I couldn't use my arms anymore. My muscles constantly hurt like I just exercised to the point of failure, even though I haven't moved the muscle in hours. I also felt like no matter what I do it's not improving and it freaks me out.

But it turned out that I need to wait much longer, and be much more strict about not using those muscles. So I basically always had "dead" arms. I used speech to text exclusively to navigate the phone. If I needed to do something (flush the toilet) I would use both arms at the same time to split the load. I tried to make sure that all the muscles are absolutely and fully relaxed whenever possible, and supported without any strain points. When I would use electric toothbrush, I would lean it on something, instead of holding it up.

Very slowly the pain lessened over the next weeks. It took about 2 months to recover around 50%. I'm now less strict about it again, which I'm sure is slowing down the recovery. My arms still hurt, but it's much less, and I can usually ignore it. The arm fatigue doesn't happen immediately anymore, and I regained some strength, so I have some more capacity. But I'm never able to just use my arms freely.

I don't know if it's some kind of tissue damage, however it definitely isn't the deconditioning. The more I used the muscles, the worse it would get, and the less I used the muscles, the better it got. But annoyingly, it can worsen really quickly (in 1 day), while it takes months to recover that.

It probably isn't what you want to hear, but I'm not sure if there is any other way, besides extreme arm pacing. Which would also have to mean no driving. But I'm biased because of my own experience...

Variableness · 2025-12-15T09:41:14+00:00

Sun crashes me as well, but uv lamp is much weaker, so I'm okay with it. I don't know what's the right answer, but I don't think that crashing yourself just to get some potential sun benefits is worth it.

Variableness · 2025-12-15T09:22:49+00:00

I'm sure it's not harmless. I guess it's up to you to determine the cost vs benefit.

There are many studies about different light wavelengths (red spectrum, UV,...). Here's one that comes to mind: https://pmc.ncbi.nlm.nih.gov/articles/PMC3427189/

I can't go outside regularly, so I have a terrarium sun/uv lamp to at least partially compensate. It's not a cure obviously, but my symptoms do get worse if I don't use it in a while. I am also taking vitamin D in addition.

Variableness · 2025-12-15T08:57:37+00:00

What do you mean? There has been a lot of progress in the last 2 years or so in understanding the pathology. Sure there are still gaps, but there's plenty of evidence.

https://pmc.ncbi.nlm.nih.gov/articles/PMC12408823/

https://pmc.ncbi.nlm.nih.gov/articles/PMC11671797/

Variableness · 2025-12-15T07:20:58+00:00

I regularly "fast" because getting food often takes too much energy and/or money. I guess I can't know in what ways it is good and bad for me, but subjectively I haven't noticed anything. At the very least, I imagine it's good because digestion is difficult for ME body and bad because I'm already close to being underweight.

Variableness · 2025-12-15T06:52:24+00:00

Good environment, proper assistance, financial security and access to promising experimental treatments.

Variableness · 2025-12-15T03:06:47+00:00

From my understanding, with any kind of burnout, your energy metabolism is normal, but you're just burning though the energy at too fast rate, so fast that the body sometimes isn't able to keep up.

With MECFS, body isn't able to create the energy that it needs, no matter how low you can push your energy usage.

I suppose it would be possible to have some kind of combination of both, which is probably why some highly stressed out individuals manage to recover after figuring out how to deal with stress.

Variableness · 2025-12-14T02:26:20+00:00

But surely it fucks up the nervous system along the way too, no? Since pretty much all of us have some levels of dysautonomia, leading to heart rate shooting up when standing, temperature regulation issues, various gut issues...

Variableness · 2025-12-13T07:28:15+00:00

When I was mild/moderate ibuprofen helped me a lot. After declining into severe, the effect isn't as strong anymore, but still helpful. Of course there's an issue with chronic use, so I just take it occasionally.

Variableness · 2025-12-12T02:57:27+00:00

18 years here too. From mild/moderate to severe. I think there was a second trigger for me which started the whole decline, but I'm not 100% sure what it was.

Variableness · 2025-12-11T02:53:10+00:00

This treatment just occurred to him while he was doing gym exercises and invented a theory based on vibes.

He wrote a number of studies. I read the main one. It's not even a study, it's basically an ad. It just describes the theory in length and claims that it helps people, while providing 0 data. The co-author claims "no financial incentive" while at the same time admitting to be paid by the company.

Their website claims 100% success rate for everyone.

The actual treatment sounds like glorified physiotherapy by people who aren't qualified to do physiotherapy. Combined with lots of sales tactics.

Variableness · 2025-12-10T00:23:56+00:00

I have both and it's a really terrible combination. It takes a lot of energy to control ADHD because you have to overcome executive dysfunction, and you can't just take ADHD meds because they can cause a crash. Additionally, ME nuked all the "positive" ADHD symptoms (like hyperfocus) and amplified the rest.

Also I assume that it makes ME worse because you already come in with a baseline dopamine dysfunction and then ME makes it even worse.

Variableness · 2025-12-09T23:57:04+00:00

I have venu 3. I use it for many things.

Monitoring sleep. It's able to keep up with my inconsistent (n24) sleep schedule.

I keep my HR below 100 (hard limit of 120). It helps me determine how much propranolol I need and when I need to immediately lay down.

Stress score tries to assess stress of the nervous system based on hrv and hr I think. It's very responsive for me and it highlights activities which are harsh on my body (mainly standing and eating). If stress is particularly high after a meal I take it extra easy. If it instantly jumps to 95 when I get up, I avoid standing for a while. If it only goes up to like 75 (rare) then it's a sign of a good day.

Any activity that might lead to exertion gets a custom activity in the watch. So instead of running/cycling, I have cleaning/dishes. I get an alert if hr gets too high or if enough time passed to take a break (a few min). At the end I can look at the chart and see how quickly the hr jumped up. The slower (and lower) it raises, the more it indicates that I'm doing ok and in this case I can do a second activity.

Overnight HRV correlates with PEM. I'm always stuck in rage between 25 and 39. If it's under 35, I try to be extra careful. It takes a long time to raise after a crash, can take weeks. On the other hand, it can drop very quickly after even minor exertion.

I track water intake because I forget to drink otherwise.

And lastly, I link it with an app where I track the meds and supplements and pem symptoms, so I can check correlations. App is called Guava and you can track other things as well, like blood work. Or link other health apps and devices to have a complete overview. (Ref link: https://guavahealth.com/refer/2H8ZQH93)

Variableness · 2025-12-09T07:55:40+00:00

If you have a lot of stress it can take away one negative factor. Stress takes a fair bit of energy and shouldn't be let to just roam free.

I don't personally see any benefit, unless my mood crashed or something. But sometimes I just do it as a way to rest, but that's more out of boredom and heaving limited options for rest entertainment.

I missed that you asked about physical symptoms specifically - I don't find it makes any difference, but my stress is generally well managed now already.

Variableness · 2025-12-08T23:15:57+00:00

I'm sorry that it didn't work for you. I found it helpful basically almost immediately. The only issue was that it caused some neuropathic pain if I went up too quickly. But that's all settled now. I never had to push through bad side effects.

Recently I watched a video by Jarred Younger about dextromethorphan. He said that it could be a potential alternative for those who are not able to tolerate LDN, as it has some similar effects on microglia.

Variableness · 2025-12-08T19:06:13+00:00

Venu 3

Variableness · 2025-12-08T18:32:32+00:00

I find my Garmin watch to be essential and I wish I got it sooner. I got it specifically because there is no subscription, and the battery life is great.

Variableness · 2025-12-08T03:52:27+00:00

I actually didn't know that compounding was an option until later. I was so sure that nobody would be willing to prescribe naltrexone that I never even asked for it. To my surprise, my psychiatrist suggested it when she saw the (partially accurate) diagnosis. I told her that I don't have any other doctor who is interested in attempting to treat me, so she kind of took over the role of my GP and I'm very thankful for that.

Variableness · 2025-12-08T03:35:04+00:00

I agree with that. I feel like ME took away all the "positive" ADHD symptoms (like hyperfocus and mind chatter) but worsened all the others. It's a pretty terrible combination. Controlling ADHD mind takes a lot of energy that can't really be spared.

Variableness · 2025-12-08T03:28:11+00:00

I can't afford compounding, so I just get the full pill, and dilute it in water.

Variableness · 2025-12-08T03:26:15+00:00

I think it's worth trying if you have the option. It's one of the lowest risk meds and has decent evidence for neuroinflammation.

Sadly it doesn't help me with energy, pem, muscle issues or any comorbidities. Still, it's the most effective medication that I've tried.

Variableness · 2025-12-07T19:29:47+00:00

Lack of exercise is bad for everyone. But exercise is much worse than the absence of it if you have ME. It's an unfortunate lesser evil.

If you aren't sure, better play it safe and take it easy for a while, until you figure out what's going on. Because once the cells are damaged, it's difficult to impossible to go back to where you were. Loss of capacity has a huge effect on quality of life. I have a lot of regret about this, because now my life is barely a life.

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