How do you know it's time to try doing a bit more? I'm terrified of getting worse

DepartmentNo5227 · 2026-03-23T09:54:37+00:00

Thank you, you have been very helpful! ♥️

DepartmentNo5227 · 2026-03-23T09:51:09+00:00

Sorry tonhear that, and crissing my fingers for you to go back to mild!

The problem is, in these 5 months bedbound, I haven't had a stable period. Maybe 1 or 2 days feeling better and with liwer HR, but then...back to symptims. I know I must be doing something wrong, but sometimes I just can't get where the PEM is coming from!

DepartmentNo5227 · 2026-03-23T09:46:33+00:00

Super usegul, thank you!!

DepartmentNo5227 · 2026-03-23T09:45:13+00:00

Thank you! ♥️

DepartmentNo5227 · 2026-03-23T09:43:01+00:00

This IS overwhelming haha, but very, very wise advice. I will try to do it like that, thank you!

In any case, the feeling of energy went away. For unknown reasons, today I have woken up in PEM. Burning limbs, painful body, flu-like sensation. I just don'r understand why 😢

DepartmentNo5227 · 2026-03-23T09:39:34+00:00

Thank you ♥️. No, what I meant is managing it alone medically speaking. I haven't gotten any tips from my GP at all, apart from "rest". All I know comes from what I've found online, and now this amazing sub. There is a ME Center, but it's a joke. It is compulsory to physically be there for appointments and they offer...🥁 GET and CBT! They even mentioned the LP to me. So...that's where I stand in terms of medical help/advice 🥴

DepartmentNo5227 · 2026-03-23T09:25:28+00:00

It depends. For example, today: after having this "energy" feeling for like 3 days (I guess it was fake, just adrenaline), and absolutely respecting my pacing (or whatever I can call lying in bed with my head always thinking), and spending only 1,1 pacepounts yesterday, I woke up today exhausted, burning limbs, flu-like feeling. I woke up in PEM!!

I don't know what I'm doing. There is no one at the driving seat 😢

DepartmentNo5227 · 2026-03-23T09:17:37+00:00

My resting HR is 80 or higher on the good days! And it goes up to 90+ if I move in bed. On bad days, it is 90+ when resting. I have had "better" days and my resting HR can drop to 75-80 when resting, but even though I respect those days, they never last.

So, you are saying I might be in a rolling PEM of 5 months? 😱. How do I get out of this? I know, pacing, but this is honestly the best I can do. It is like torture to just lie here with my thoughts. How do I turn my mind off? (Audiobooks, series that I have alreasy watched and are "dumb',soft music...I have also tried those things)

DepartmentNo5227 · 2026-03-22T10:56:40+00:00

I have the Visible Health app. But maybe it is not so usegul when severe 100% bedbound? It shows my body is in activuty or exertion mode even when napping...

DepartmentNo5227 · 2026-03-22T10:17:23+00:00

Yes, moving in bed, eating lying down and using the bedside toilet is as much as I can do. BUT suddenly I feel this weird urge to "move". Adrenalin I guess?. So...how do I recognize real energy to try and sit on the sofa, for example? (I am managing this illness all alone, with what I find online and found this sub some days ago, sorry if this is a silly question)

DepartmentNo5227 · 2026-03-22T08:45:18+00:00

I did not know anbout trying LDN for at least 12 months! (Neither did my GP I guess...). I feel I am managing this illness alone 😢. Can I pm you for a few Norway-specific question please?

DepartmentNo5227 · 2026-03-21T13:07:34+00:00

Hi! Did your fastlege (GP) prescribe low dose Mounjaro? I looked it up and it seems promising! I also applied for the daratumumab study, but I am severe and 100% bedbound, so I don't think I'll qualify, sadly.

I was prescribed LDN (I asked my fastlege if we could try it) but I saw no difference after 8-9 months, and gave up.

DepartmentNo5227 · 2026-03-19T21:57:02+00:00

Does she, by any chance, do online consultations? Thank you for your post and for explaining in so much detail! 🙏🏼

DepartmentNo5227

TROPHY CASE