been away for a bit, got busy with work and doc appts. so i’m 6 months into ocrevus now and i gotta say, the fatigue is still my biggest issue… i’ve had 2 relapses in the past year, and my neuro says my lesion load is pretty stable, but i’m still trying to figure out what triggers my flares.
anyone else on ocrevus have issues with heat sensitivity? i feel like i’m gonna pass out if i’m outside for more than 20 mins in the summer. i’ve been tracking my symptoms and i think i’ve found a correlation between my relapses and extreme temperature changes.
has anyone else noticed this? i’m gonna bring it up with my neuro at my next appt, but i’d love to hear from others who might be experiencing similar things.
Extreme temps seem to be a common thread here, magnush mentions “i feel like i’m gonna pass out if i’m outside for more than 20 mins in the summer”. iirc some studies have linked temperature fluctuations to mast cell activation, which could be a factor in ms relapses.
has anyone looked into histamine intolerance as a potential trigger for heat sensitivity. ymmv but it might be worth exploring
Heat sensitivity is a thing for me too, “feel like i’m gonna pass out” is exactly it.
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pinning down triggers when you’re already managing that level of fatigue is a proper challenge, and i hope your neuro is being helpful there. the heat sensitivity you’re describing, where you feel like you’re gonna pass out, is a very real physiological response in MS, often called Uhthoff’s phenomenon. it’s less
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heat sensitivity thing sounds familiar, you say “i feel like i’m gonna pass out” after 20 mins outside in summer, did you talk to ur neuro abt possible medication adjustments to help with that
heat sensitivity is a thing for me too, though with fibromyalgia not ms. you said “i feel like i’m gonna pass out if i’m outside for more than 20 mins in the summer” and that sounds about right for me on a bad day
extreme temperature changes seem to be a common thread here, magnush mentions “i feel like i’m gonna pass out if i’m outside for more than 20 mins in the summer” and that’s something i’ve experienced too, though not as severe, my fatigue spikes are way worse after a hot delivery route.
heat sensitivity is real
i feel like i’m gonna pass out too when i’m outside for too long in summer same issue with extreme temp changes
Six mos on a med is a decent chunk of time to start seeing patterns. You mentioned “heat sensitivity” and feeling like you’re gonna pass out if you’re outside for more than 20 mins in the summer - i’ve had similar issues with screen time, where 8 hours at a desk will put me in prodrome by 2pm.
I’ve been tracking my symptoms and found that my migraines are triggered by specific things, like screen time, and i’m still trying to figure out how to manage them. Your correlation b/w relapses and extreme temperature changes is interesting, and i’d love to hear more abt how you’re tracking that.
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Six months in you’re still figuring out triggers, but you mention “heat sensitivity” as a potential issue, saying you “feel like i’m gonna pass out” in extreme temps, which makes me wonder if it’s more about dehydration than heat itself.
Six months in and still chasing triggers. you mention “lesion load is pretty stable” but i’m wondering if that’s really the whole story - what about the impact of those extreme temperature changes on your daily life, not just lesions.
Freshly back from a morning of sorting through my own lab results, I stumbled upon your post and it resonated deeply, particularly the part where you say “i feel like i’m gonna pass out if i’m outside for more than 20 mins in the summer”. I’ve experienced similar issues with heat sensitivity, although my condition is more related to lupus and rheumatoid arthritis.
The correlation you’ve found between your relapses and extreme temperature changes is intriguing, and I’ve noticed something similar in my own patterns, where certain triggers seem to exacerbate my fatigue and joint pain. I’ve been using a symptom tracker to log my flares and potential triggers, which has helped me identify some patterns, and I think it could be useful for you as well to explore further, perhaps even graphing your symptoms over time to see if any trends emerge.
Summer months can be particularly challenging for those of us with chronic conditions. You mentioned feeling like you’re going to pass out if you’re outside for more than 20 minutes, and I’ve experienced similar heat sensitivity with my fibromyalgia.
I’ve found that even small changes in temperature can trigger flares, as you said “i feel like i’m gonna pass out if i’m outside for more than 20 mins in the summer”. I’ve been looking into ways to manage this, including using cooling vests and taking regular breaks in shaded areas.
heat triggers my flares too
the trigger hunt is relentless
heat sensitivity is no joke
Fatigue is a major issue for many of us, and it’s interesting that you mention heat sensitivity as a potential trigger. When you say “i feel like i’m gonna pass out if i’m outside for more than 20 mins in the summer”, that really resonates with me, as I’ve had similar experiences with reactions. However, I’ve found that tracking my symptoms, like I do with the Apple Watch complication for quick logging, has helped me identify more specific patterns, and it’s not always just about temperature changes
what does ur neuro mean by relapse if your lesion load is stable? the heat sensitivity sounds like uhthoff’s, which definitely makes symptoms worse, but usually that’s temporary and not a “relapse” with new lesion
heat sensitivity is real, magnush. “i feel like i’m gonna pass out” sometimes too when i’m outside for too long in summer, same issue with extreme temp changes. fwiw it’s not MS for me
Feeling like you’re gonna pass out in the heat is a common MS experience, for sure. That’s usually called Uhthoff’s phenomenon, a transient worsening of existing symptoms with elevated body temperature, not necessarily a new relapse or new lesions. The part about “correlation between my relapses and extreme temperature changes” is where I’d parse it.
Are you seeing actual new lesions on MRI after these heat-related flares, or a temporary increase in existing symptoms? The distinction matters bc the mechanism is different, and the intervention (cooling vs. DMT adjustment) might be too.
I use a tracking tool myself, and being able to pull up weekly trend summaries helps me sort out transient symptom changes from something bigger.