Hi everyone. I’m 34 and was diagnosed with relapsing-remitting MS earlier this year after months of weird symptoms I kept brushing off. It started with tingling in my left hand, then a bout of optic neuritis that finally got me to a neurologist. The MRI lit up like a Christmas tree.
I’m about three months in and still trying to wrap my head around it. The fatigue is the part I wasn’t prepared for. It’s not “tired after a long day” tired. It’s “I made breakfast and now I need to lie down” tired. And the brain fog. I’ll walk into a room and forget why I went in. Mid-sentence I’ll lose the word I was reaching for. I used to read two books a month. Right now I can’t finish a long article.
My neuro started me on a DMT and we’re monitoring. She mentioned heat sensitivity (Uhthoff’s), which I’ve already noticed. A warm shower wipes me out for hours.
I’m trying to be patient with myself but I also want to actually do something. For those of you further along:
- What helps your MS fatigue on the bad days?
- Any tricks for the brain fog, especially at work?
- Did tracking your symptoms help you spot patterns or triggers?
Not looking for medical advice, just want to hear what’s worked for real people. Thanks for letting me vent.
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Ten years in here. Fatigue is the wall, and pacing is the thing that finally helped. The rule I live by now: assume every day has half the energy you think it does, and protect that half. Heat is a wrecker, you’ll learn what your triggers are. Tracking honestly made the biggest difference for me. I thought my fatigue was random until I logged sleep + activity + symptoms for three months and saw my crash days lined up with poor sleep way more than with how busy I’d been. The brain fog gets a little easier to live with once you stop fighting it and start working around it. Hang in there.
Year 2 with RRMS, hi 👋 Brain fog at work is the worst. Two things that helped me: a running notes doc open in every meeting where I dump everything, and voice memos for anything I’d normally try to remember (grocery lists, the thing I was about to do before I got distracted, etc). Also told my manager. I was terrified to but it took so much pressure off. You’re not going crazy, this is the disease, and you’re allowed to need scaffolding.
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Welcome to the club no one wants to join. Three months is so raw, please be patient with yourself. The lying-down-after-breakfast thing is so real and I remember thinking I was being dramatic until I learned MS fatigue is its own neurological thing, not regular tired. You’re not lazy. You’re managing a disease. Sending you a lot of love.