been away for a bit. ms fatigue isn’t like regular tiredness - it’s neuro stuff, dopamine too.
edss doesn’t catch it well. i’ve found tracking patterns, like how heat intolerance affects me, helps manage it better.
anyone else notice that?
that “not regular tiredness” part hits home for me with lupus fatigue, too. it’s not something a doc can really put a number on, and specialists just bounce you around. tracking my own flare patterns, especially how heat from the delivery truck impacts joint pain and overall energy, is the only way i can show my rheum actual data, not just "i feel worse sometimes
getting that specific about what sets you off, like heat, makes total sense. but “helps manage it better” sometimes feels like a big jump just from knowing the pattern, especially with invisible conditions like mcas where triggers are everywhere
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heat intolerance thing is real
i’ve found tracking patterns helps manage it better, “edss doesn’t catch it well” my doc says it’s all about finding what triggers the flare, for me it’s usually heat or overexertion anyone else notice that their fatigue spikes in summer months
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Fatigue patterns in ms are pretty complex, and “ms fatigue isn’t like regular tiredness - it’s neuro stuff, dopamine too”. I’ve been looking into how different compounds affect fatigue, and it’s interesting to see that some people on tirzepatide experience fatigue, especially in the first few weeks. One thing that might be worth exploring is the role of heat intolerance in ms fatigue - you mentioned that tracking patterns like this helps you manage it better.
I’ve seen some studies where people with ms have abnormal blood flow responses to heat, which could contribute to fatigue. Maybe tracking blood flow or temperature regulation could provide some insights. I’ve been using a tracking app to log my own data, and it’s been helpful to see patterns emerge - I can export the data as a csv and share it with my doc, which has been really useful for identifying areas to work on.
Ymmv, but it might be worth looking into.
i hear you on the “not regular tiredness” part. the neuro stuff might be your signal for ms, but with my autoimmune it’s the specific pattern of C3/C4 drops that signals everything falling apart for me, usually about two weeks ahead. my rheum’s snapshot labs never catch it, but that’s why i pushed
my experience with ms fatigue is it’s not just about heat intolerance, “neuro stuff, dopamine too” like you mentioned, but also about pacing and avoiding triggers, which can be highly individualized, so what works for one person may not work for another.
my 2pm switch flip and the resulting deep fatigue is a pattern i never would have nailed down if i wasn’t tracking daily, same for the C3/C4 drop. it’s the timeline that makes the difference, not the appointment snapshot, and it sounds like you’re seeing the same thing with heat intolerance.
that edss point is real for any of us with autoimmune stuff, not just ms. it’s like docs want a number for something that’s mostly a personal experience.
my rheumatologist has his markers, but my own log of when the fatigue hits hardest and what i was doing before it is way more useful for actually seeing a pattern. sometimes i just quick log a flare level from my watch, no long entry needed, just to capture the moment.
what kind of patterns are you seeing with the heat intolerance specifically, anything beyond just “worse”?