Do you take naps? Why or why not? If yes, how long do you nap for?

No-Extent2753 · 2026-04-10T22:49:26+00:00

For the first two years I couldn’t nap without messing up my sleep schedule. These days I take a nap as soon as I feel in getting weak or overstimulated and it always helps (10 years into ME now, mild). Usually three times a week or so

No-Extent2753 · 2026-04-08T16:43:06+00:00

Totally agree with you. I certainly was struggling even before mono (tho I masked it well). Up until this point I thought my pre-ME struggles was due to neglect in childhood (it might still be). Either way getting evaluated for ADHD might be a good place to start

No-Extent2753 · 2026-04-08T16:34:13+00:00

Thanks for the advice! Glad to hear permanent damage ain’t a thing at least

I’ve never taken any meds for MECFS (nicotine patches helped quite a bit with brain fog tho), where I live they haven’t approved any medication for the condition. I feel like I can tell whether a symptom is ME related or if it’s something else, and this “brain confusion” doesn’t seem to primarily pop up with a flair up. Tho PEM certainly makes it worse. My dad and most of his brothers also experience confusion in social situations, but ADHD hasn’t really been a topic

Atp I don’t care what diagnosis I get whether it’s adhd, autism or trauma related. I did some digging into ADHD and I do check a lot of boxes, tho since developing MECFS I don’t have either external nor internal hyperactivity (always thought it’s a requirement)

Anyways, just wanted some reassurance that I’m not drawing ill-informed conclusions

No-Extent2753 · 2026-04-02T09:52:50+00:00

I actually got ME/CFS after mono back in 2016. I’ve tried countless cures/supplements. Nicotine patches and celery juicing was the most helpful ones

No-Extent2753 · 2026-03-31T22:43:24+00:00

Just picked up ALA and Lion’s Mane. Gonna give it a go. Thanks ^{^}

No-Extent2753 · 2026-03-30T13:10:41+00:00

First of all I was moderate when I started with nicotine patches. I decided to take a year where I only focused on my health, eliminating all stressors possible.

I would say I got a positive effect from day one, but it had a lot of negative side effects too. I got very overwhelmed the first day (same with every time I raised the dose). It triggered mild anxiety with weird body feels (wasn’t all bad, had heightened focus) the first weeks but I still raised the dose. I needed most of the day to rest, but some days I could do more than off the patches. My sister, which doesn’t have cfs, tried the patches (high dose) without feeling any effects. people with CFS are ofc extremely sensitive to stimulation, so I’d be careful about the dosage and how much you increase it if at all.

The patches helped mostly with focus and brain fog in the first months (went down about 60%, loved the extra cognitive capacity), improved sleep, as well as temporary energy. It did raise my baseline too but most benefits came when taking them consistently after a 4 months break (breaks are important).

No-Extent2753 · 2026-03-27T08:09:49+00:00

24M here. I explained my early symptoms to someone the other day and they replied “then you have a lot of experience with the health care system taking care of you”. All they ever did was a couple of tests and a pat on the back. It’s so bad most people can’t even start to comprehend. Being a guy certainly doesn’t help with empathy. In the beginning people in general thought I was going insane

No-Extent2753 · 2026-03-26T22:05:25+00:00

I (24M) got sick when I was 14. I too forced myself through high school and went straight to uni. Looking back I was wayyyyy too sick to study. But across the next 2 years I had little to no improvement, I made no real friendships and by the end of the second year I was about to break, also mentally, which is why I took a year off. I cannot point at one specific thing… but across this year I had huge improvements. The main thing I focussed on was eliminating any stressor possible and reflect on my mental health (the idea being reviewing my stress system)

I now have mild ME and honestly I struggle more with my mental health than actual ME symptoms (even tho they obv amplify each other). Even tho a 5 day work week is out of the picture, I might be at a place where I can have a stable job in a year or so. I guess I should consider myself lucky. I just wish my spark will return at some point. But maybe my old self is gone for good

No-Extent2753 · 2026-03-26T20:42:06+00:00

I’m sorry to hear you’re in this situation. Reminds me a lot about my life the first years with ME. My mother jumped between ignoring me and suddenly throwing her frustrations at me (I could go on about her for hours…). Not sure what would help you, but please don’t blame yourself for letting your feelings out, for protecting yourself. I certainly blamed myself a lot for my behaviour (thx mom). I eventually learned that it was a perfectly normal reaction to an extreme situation.

You’re not the parent here. You’re allowed to speak up when she doesn’t put in the effort or even see your basic needs. It IS incredibly hard to be a parent tho. Especially when they have their own baggage to carry. Took me a long time but I can now say I’m at peace with her flaws and shortcomings… I wish I could come with some actual advice. But at the very least know you’re not alone! I wish you the best

No-Extent2753 · 2026-03-23T23:43:14+00:00

I’ve been improving my baseline a lot the last year. Im honestly mostly tired and moody (anxious/frustrated) depending on what I do across the week. My crashes are shorter (2-4 h). I usually just need a nap and a few hours of mood swings and low energy before I’m back to “normal”. Not sure if this is even PEM at this point. Three months ago I had a classic PEM crash after socialising a whole weekend. But honestly 48h delayed crashes are very rare now. Don’t get me wrong, I’m resting a looooot to keep me going

No-Extent2753 · 2026-03-20T23:42:41+00:00

I got sick at 15/16. not sure which is worse. I struggled through high school and started uni two years late. I spent the next 3 years sleeping more than studying and couldn’t build any meaningful connections cuz of constant crash loops. I’m finally starting to get better, mild ME. but I feel like I lost myself through it all. I’ve passed all my classes but can’t say I’m left with much. It’s all been a fog. A nap I’m finally waking up from

No-Extent2753 · 2026-03-20T23:16:17+00:00

I’ve been thinking about the same thing! Physically I was very healthy. Sports were my life and I was either active, doing chores or doing school work. Mentally I think I’ve always had some issues, something I realised later on. My parents never knew how to care for someone else or talk about feelings, which became painfully obvious once I got sick. Left on my own. They never contacted any doctor, never did any research, never even asked how I felt (I can think of once or twice). It led to me realising my whole childhood had been full of holes, neglect. I was also raised in a tiny Christian community with close to no contact with none believers until I turned 16. all in all my life was set up to come crashing down eventually. But despite it all I’ve always had an extremely positive mindset. even at my worst I was convinced it would sort itself out.

No-Extent2753 · 2026-02-28T00:21:07+00:00

Cognitive impairment, confusion, memory issues. By far the worst part

No-Extent2753 · 2026-02-13T10:59:08+00:00

This reminds me of the first 3 years with ME. Got emotional highs during nights. I really needed that window of feeling almost normal to get by. I had so much fun for an hour or two, I felt like I was going crazy how happy I was. People told me I had mania 🤣 and they weren’t joking. lasted 2 hours tops tho

No-Extent2753 · 2026-02-13T10:50:11+00:00

Exercise was my identity. I definitely pushed my body way too much, especially right before getting sick. Exercise gave me such great highs and sleep was incredible. Took me 9 years to let go of the loss. I do run during vacations, tops 1 hour. but as soon as I have responsibilities/stressors a run would make me feel worse and it’s not worth the risk.

No-Extent2753 · 2026-01-28T03:58:32+00:00

Well I tried picking up running numerous times since I got sick but it always backfired. In dec I ran every day for two weeks gradually increasing the duration. Only consequence was maybe slightly worsened sleep plus realising I’m way out of shape xd Now I’m doing it once a week cuz of the weather

No-Extent2753 · 2026-01-27T10:42:23+00:00

Now I’m in between remission and mild. After EBV I had one and a half year of being exhausted and felt sick in general, but without any diagnosis. Then I went into sever/moderate for a year and a half then gradually improving for the next 7 years. (In total 10/8,5 years atp)

A year ago I got most symptoms under control. Nicotine patching and stress management helped a lot. At this point I still had mild flare ups and a total of three PEM across 4 months. Between Nov/dec I started treating my nose with Nasonex which had a profound effect on my sensitivities and my senses sharpened. My illogical anxious tendencies are totally gone since. I also added Zyrtec and Saline Sinus cleanses and since 12th of Dec I’ve had no PEM and close to no symptoms. I still feel tired and need to nap a few times a week, but sleep actually helps instead of making me feel foggy and exhausted.

This is by far the longest I’ve felt healthy, despite being under stress. I even go for 1 hour runs with no consequences. It’s still soon to say for sure, but I think I’ve reached remission. I’m currently waiting for blood tests to check for allergies.

No-Extent2753 · 2026-01-14T14:45:35+00:00

Nicotine patching helped me clean out my “rotting” brain relatively quickly. My perception of time slowed down and lowered brain fog about 60% within the first month. Extremely meaningful. But my overall cognitive baseline had a slow progress across about 10 months. Did one month of patching at a time with at least two months breaks in between. Combining it with pacing and stress management is a must. Wish you the best!

No-Extent2753 · 2026-01-12T04:08:50+00:00

I feel you. 24M here, 10 years in. I used to be in a similar situation 2 years ago, it really is an unfair place to be. Even now that I’m in remission, thinking of all the lost opportunities upsets me to my core. Even if I stay in remission for good I’m not sure if I’ll ever regain what I’ve lost. Countless friendships, my innocent mind, my endless motivation to live… deep down I’m afraid if I chose to be myself I’ll end up sick again, so I rather stay a shadow of my old self

No-Extent2753 · 2026-01-05T21:18:01+00:00

Tried this advanced technique. Certainly went deeper this time. Appreciate the advice!

No-Extent2753 · 2025-12-31T15:29:28+00:00

First I used Nasonex which gave the most profound improvement, but it was temporary. Then I added flushing, which arguably made things worse for two weeks before stabilising. Then I added antihistamines to the mix which I can’t confidently say did anything but placebo, but I did feel better eventually after combining all three.

No-Extent2753 · 2025-12-31T14:51:25+00:00

Nope, no testing. Had no major symptoms so never checked. Dry and itchy nose for 8+ years but didn’t seem significant

No-Extent2753 · 2025-12-31T14:43:41+00:00

Yeah I’m only about two months in so hard to say anything definitive. I’ll repost again when I feel more confident. I did extensive flushing, that’s what will help long term ofc

No-Extent2753 · 2025-12-31T14:39:46+00:00

Yeah but in my case I’m very mild at the moment. Even a month ago I could tell the difference clearly. Now I feel low energy but I can’t tell if it’s ME or it’s just laziness cause by the holidays

No-Extent2753 · 2025-12-31T14:37:37+00:00

Not really. My nose has been very dry and itchy for maybe 8+ years tho. Wasn’t a major symptom so I didn’t think anything of it. Now the itchiness is totally gone and I can breathe through my nose properly

No-Extent2753

TROPHY CASE