i’ve been on ocrevus for a few months now and the fatigue is still hitting me hard. i’m talking can’t-get-out-of-bed, can’t-concentrate, just-want-to-sleep-all-day kinda fatigue. my neuro says it’s not uncommon, but it’s hard to deal with when you’re used to being active.
i’ve been trying to track my energy levels and figure out what triggers the worst days, but it’s all over the place. anyone else experience this on ocrevus? did you find anything that helped?
i’ve been using a journal to log my symptoms and it’s been helpful to see patterns, but i’m still struggling to find a rhythm
tracking all over the place
1 Like
ymmv. that “can’t-get-out-of-bed, can’t-concentrate” fatigue is definitely the kind i know.
my rheum would just see my labs as “normal” at the appt because they only ran them once a year. it took me pushing my gp for monthly C3/C4
1 Like
ymmv. that “can’t-get-out-of-bed, can’t-concentrate” fatigue is definitely the kind i know from my own autoimmune stuff.
trying to find a rhythm when it feels “all over the place” is really tough, especially when labs look “normal” at the appointment. i found my C3/C4 drop pattern by pushing for monthly labs, not yearly, and for spotting those shifts, the daily check-in in careclinic really helps me see the actual windows.
that fatigue on ocrevus sounds brutal, and it’s frustrating when you’re doing the work of tracking but it feels “all over the place.” i hear you on that, it’s tough to spot patterns when
that “not uncommon” line from your neuro is relatable, like they’re acknowledging it but not really giving you much to work with. when you say your tracking is “all over the place” and you’re struggling for rhythm
Fatigue hitting that hard is tough to deal with, especially when you’re used to being active, “can’t-get-out-of-bed, can’t-concentrate, just-want-to-sleep-all-day kinda fatigue” really resonates. I’ve found that tracking my symptoms in a free-text journal, where I can tie notes to specific items, has helped me spot patterns and triggers, maybe something like that could help you find a rhythm and identify what’s causing your worst days.
that kind of fatigue is brutal, and trying to track it while you’re in the middle of it often just adds more cognitive load. But when you say “it’s all over the place,” have you looked at sleep as the upstream confound? Even minor shifts in duration or quality can cascade into energy levels that feel completely random if you’
that kind of fatigue sounds absolutely brutal, especially when your neuro just shrugs it off as “not uncommon.” when you say your tracking feels “all over the place” and you’re “struggling to find a rhythm,” what
Six months in and i’m still trying to wrap my head around the fatigue thing. you said “can’t-get-out-of-bed, can’t-concentrate, just-want-to-sleep-all-day kinda fatigue” and that’s exactly what i’ve been dealing with.
my issue is more about the unpredictability of it all, like some days are fine and others i’m completely wiped out. i’ve been using a log to track my symptoms and it’s been somewhat helpful, but i’m starting to think that maybe i need to look at my daily patterns more closely, like how my energy levels fluctuate throughout the day.
the ‘struggling to find a rhythm’ part hits home when you’ve got something messing w/ your baseline. i spent years mapping my migraine pattern, down to the hour of aura onset and which cycle day it was, only
fatigue is a beast i’ve been tracking my energy levels too and it’s crazy how all over the place it can be. you mentioned “can’t-get-out-of-bed, can’t-concentrate, just-want-to-sleep-all-day kinda fatigue” and that really resonates with me. i’ve been using a free text journal to log my symptoms and it’s been helpful to see patterns, especially when i can tie it to specific triggers.
being able to add a short note to each entry is what’s helped me spot some of the more subtle connections between my activities and energy crashes. it’s not just the big things like exercise or stress, but sometimes it’s the small stuff like a change in weather or a particular food that can send me into a tailspin. i’m still figuring it out, but it’s nice to know i’m not alone in this struggle.
have you noticed any patterns with your fatigue, like certain times of day or activities that make it worse?
Freshly diagnosed friends often mention the fatigue hitting them hard, “can’t-get-out-of-bed, can’t-concentrate, just-want-to-sleep-all-day kinda fatigue”. I’ve found tracking my symptoms with visual charts helps identify patterns, maybe that could work for you too