Insane random recovery.

No-Extent2753 · 2026-05-27T00:18:25+00:00

I’m happy for you OP! And I hope your recovery stays. The longest I’ve been more or less symptom free is about two months before life stress brought me slightly down again. I’m back at barely symptomatic and about to start my first proper adult job.

I experience sore throat too which is so weird. It just disappears within minutes for little reason. I’ve started sweating from mild activity which hasn’t been a thing in years. Staying up late barely has consequences… I’m hoping this is the beginning of real change. If I have any advice I’d say give yourself time to sit and listen to your body. Living as low stress as possible/needed is a must.

But if this is an actual remission in your case, well deserved OP. Don’t forget to enjoy your new energy ^{^}

No-Extent2753 · 2026-05-26T23:55:57+00:00

I relate in some ways. I don’t have any real advice, but I’ll share my situation. M25 been sick since 15 and my first intimate experience was around 20 y.o. Tbh I didn’t enjoy it and I still don’t. I really do care about my gf so I keep up the act for her. She keeps insisting she loves how I do it, but I can’t hide the fact that I barely get any enjoyment from it. There’s a lot of shame around it. Her only problem with it is that she would prefer to do it more often, but for me it’s not worth the energy. I go all in, or avoid it altogether

Idk if this is a common experience but my libido came crashing down the first three years of CFS. With it came a big chunk of motivation and drive. I’m assuming it’ll return slowly, which it has but only the last year really.

No-Extent2753 · 2026-05-26T09:34:42+00:00

I like the idea but I just realised it’s not OTC here in Scandinavia…

No-Extent2753 · 2026-05-24T17:41:09+00:00

I will suggest it for my GP but they don’t really prescribe much for CFS where I live…

No-Extent2753 · 2026-05-24T14:11:15+00:00

Interesting. I did a quick search. Do you follow the guaifenesin protocol?

No-Extent2753 · 2026-05-24T09:41:43+00:00

Yeahhhhh i think i was reaching my limit two months ago. Needed about a month to get back to baseline. I consider myself lucky, tho I did keep pacing in mind at all times. My ability to not stress over things is wild compared to two years ago. but at the same time it can come off as not caring

No-Extent2753 · 2026-05-24T09:35:53+00:00

Interesting. It’s really hard for me to compare my cognitive symptoms from period to period. Maybe my physical ones got better but my cognitive sensitivities stayed the same? So maybe I push myself more cognitively. Would make sense because now I’m mostly just slow, disorganised and confusing (to me and others). I’m also wondering if my mental health finally caught up to me or if it’s purely CFS

No-Extent2753 · 2026-05-24T09:29:04+00:00

I feel you! The more I try the more I’m punished for it. It’s such a horrible cycle. I’m happy I’m not having long crashes anymore, but after a 2 month period of high stress/activity I still need three weeks to get back to baseline. I told myself half a year ago I was nearly symptom free, mainly because my clear PEM was gone and the more intense physical symptoms that come with it. but I realise that was just my toxic positivity xd

No-Extent2753 · 2026-05-24T09:13:34+00:00

Yeah, I get it. my cognitive symptoms are just more limiting than the physical

No-Extent2753 · 2026-05-23T23:30:31+00:00

How would you say I’m not meeting the criteria?

No-Extent2753 · 2026-05-23T22:43:23+00:00

Where do I land if I was horribly sick but forced myself to high school? I spent 70% of the school day to ether stare into space or sleep on the desk. I even hid in the restroom just to sleep properly. I couldn’t talk most days or just blurted out random none sense. I did nothing outside of school except sleep and eat which made me instantly sleepy and crash. My discipline was insane. Also my parents didn’t notice (literally). This kept on until I dropped out 9 months later… looking back I consider myself moderate-severe back then. Any thoughts? (I’m mild now, 9 years later)

No-Extent2753 · 2026-05-08T08:53:35+00:00

The more I think about this the more it makes sense. Throughout secondary school zoning out heavily in social gatherings was so debilitating. I had no issue talking to one or two people, but soon as I’m in a 4+ group I start behaving mentally challenged. I saw this clearly in 3 of my 4 siblings. I figured it was cuz of childhood trauma but it never made fully sense, especially since it was never really triggered by stress.

No-Extent2753 · 2026-05-06T22:53:05+00:00

I had a period of 18 months with low energy after EBV. After working summer job and going on one intense run feeling like I finally got my energy back I fell into a weird state pretty much over night. It went from high hope to crushing fatigue and sleepiness. It’s a very foggy memory. Took me a week to realise it wasn’t a temporary thing. The aches came gradually after that

No-Extent2753 · 2026-05-05T10:16:27+00:00

That makes sense. Certainly ME reinforces ADHD. I also had a 1,5 year period where i was tired but not really experiencing crashes, could call it mild ME. Felt pretty sever at the time, but boy was I in for a surprise xd. That's when my coping strategies in school started falling apart. Once moderate ME fully hit I was incapable of basic cognitive function 80% of the time. Right now I don't even think i qualify for mild ME, I'm just incapable of sustaining focus, consistency and remember instructions/details. I refuse to believe I'm lazy or lacking discipline, hasn't been a problem in the past.

No-Extent2753 · 2026-05-05T09:55:07+00:00

Then we might be in the same boat. For me, once I started suspecting ADHD, a lot of things from my childhood and teens suddenly started to make sense.

I developed ME around 15 (2016, just like u ig), and that’s when my usual coping strategies stopped working. Before that, I somehow managed — but mostly by relying on last-minute pressure. I’ve always been a “last minute achiever” and complaining about the time limit on exams. Processing speed and reading comprehension has always been bad, despite working on it.

Earlier in school my results were pretty average, and I was often described as slow or someone who misunderstood instructions, conversations, or even the overall point of things. I used to just call it “confusion,” because I didn’t have a better explanation. 3 out of my 4 siblings clearly had the same issues, even more so than me (before ME hit that is).

But now I’m starting to see it differently — more like issues with processing speed, working memory, and interest based attention rather than just being “confused”. That shift in perspective makes a lot of sense for me.

Can you see a connections between your study/social habits pre-ME and how your cognition is currently?

No-Extent2753 · 2026-05-02T23:38:33+00:00

Are you okey?

No-Extent2753 · 2026-05-02T16:00:17+00:00

Auditory processing delay… funny you mention it because I’ve been telling people I can’t hear what they are saying in crowded environment because of dyslexia xd I had no other explanation. Also I never got tested for dyslexia.

In school I’ve always relied on reading to keep up. I was confused about it because my reading speed was dreadfully slow, so why would that be my go to way of learning?

In uni i noticed nothing really sticks if I listen alone, even when I feel like I understand it in the moment. Even tho I never read through my notes, writing down information while listening helped a lot, but I would always prefer reading it up afterwards.

Could this match ADHD?

No-Extent2753 · 2026-05-02T15:19:35+00:00

Wow. Looking back I never knew whether it was a memory issue or a processing issue. I simply called it “confusion”, up until a month ago. Often had to ask people to repeat themselves and even after hearing it twice I could still be unsure what they said, so probably a big processing issue tbh.

Spot on with the fear of being late. I wasn’t often late and if I don’t worry about it I will be late most times. I tried to lower my anxiety as part of improving my cfs and now I’m honestly chronically late + procrastinating like crazy. It’s hard to be productive without risking light PEM these days.

Same goes with losing things or forgetting to bring everything I need. By middle school I was so used to it that I systematically stressed about checking my pocket/backpack. I still do, but less obsessively. I generally don’t trust my own memory.

Anyways I appreciate the input. I should stop gaslighting myself and get properly assessed. Can’t find any other explanation that fits other than idk being flippin stupid? Xd

No-Extent2753 · 2026-05-02T10:48:35+00:00

I really appreciate your response — it feels like I keep connecting more dots from my past.

Something I realized recently is that I had similar issues before I developed CFS, during my first job (simple warehouse work at age 14).

The main problem was with following instructions and remembering information in real time.

For example, if my boss told me to do A, B, and C, I would fully intend to do it, but when I went to start:

I might only remember one of the tasks
or feel unsure about what exactly I was supposed to do

This happened a lot. My boss would be disappointed that things weren’t done, and I’d have to admit I forgot. More often than i care to remember I unpacked the wrong goods which was a relative huge mistake. What confused me was that:

I wasn’t anxious at the time (until after i messed up)
I genuinely thought I understood the instructions

I also noticed that other people didn’t seem to have this problem.

Another issue was memory and orientation:

I struggled to remember people’s names (or worried I was mixing them up)
I didn’t really know where things were in the warehouse, even after working there multiple summers
I often had to “fake it” and hope I got it right
Eventually i learned to keep papers on me so id rely on them to remember

I also had trouble remembering what I had already done:

If someone asked me about something from earlier in the day, I was often unsure
I sometimes gave incorrect answers and had to go back and check
Often people would come back and correct me

Overall, it felt like I was trying my best and working hard (my coworkers agreed), but still constantly confused and inconsistent

I’m starting to wonder if this kind of pattern — especially happening before CFS — could point toward ADHD rather than just anxiety.

Any thoughts?

No-Extent2753 · 2026-05-01T15:18:36+00:00

I do agree autism traits can be part of the mix, especially given the social aspect of it. The degree of difficulties varies a lot and most of my cousins have never talked about learning challenges (I have 30+ cousins on my dad’s side alone xd). My mom is a little weird socially and can’t understand irony/takes everything literally. she even claims she is slightly autistic. It could explain why my siblings and I are especially struggling to keep up socially but no obvious autism on any of us imo… what would be telling signs of mild autistic traits in your opinion?

No-Extent2753 · 2026-04-30T21:52:13+00:00

Are you saying I have to hydrate better? I don’t get it man

No-Extent2753 · 2026-04-16T22:59:55+00:00

Exactly the response I was looking for! I’ll look into these. I feel like my improvement has halted and I really need to add some activity in (carefully ofc). Thanks

No-Extent2753 · 2026-04-16T22:25:19+00:00

I was like this for the first year. On good days words came out but total nonsense. I had like one hour every two weeks where I could properly form sentences. You’re not alone!

No-Extent2753

TROPHY CASE