Three versions of Goldilocks stand together, one wearing a 3/4 length sleeved shirt and pants, one wearing a sleeveless dress with a pink swimsuit underneath, and one wearing a cooling vest and straw hat.

Temperature: The MS Goldilocks Zone

I feel like this is such a worn-out topic in the multiple sclerosis (MS) community, especially during this time of the year (summer), but given how common heat intolerance is for the majority of us living with MS? I honestly don’t see it going away any time soon. Our (MSers) environment’s temperature plays such a massive role in our health that there will probably always be something new worth discussing regarding this subject. So, before I move on, I want to make sure that we’re all on the same page.

What does heat mean?

If you’re an "MS veteran", this should be a no-duh statement; people with MS tend to be really sensitive to heat. Exposure to heat can cause a temporary worsening of neurological symptoms, which is an occurrence referred to as Uhthoff’s phenomena. But the specific detail about this fact that I want to focus on today is a simple (but definitely overlooked) one; what does heat mean? Specifically, what is considered to be hot, and what is just warm?

"Hot" is subjective

Now, I know what some of you are thinking. “Hot is hot, duh.” But is it? Is it that simple? Like most things in life with MS, I would argue that no, not at all. Nothing is that simple. “Hot” actually seems to be subjective, by which I mean, hot to me might merely be warm to you. To others (like a friend of mine who doesn’t have MS) what I consider to be hot might be comfortable or even “cold” from their perspective. I can admit that this kind of seems like a really small detail that doesn’t really appear to matter in the grand scope of treating MS, but I would argue that it actually does matter, because from the individual’s perspective? Well, anyone with a heat intolerance can tell you, it matters a lot to them.

What if heat were objective?

I've honestly never looked into what research has to say about this, but I assume that if heat intolerance were objective and not subjective, every single person living with this illness would start to experience an adverse reaction at the same exact temperature. For example, let's pretend that heat sensitivity in MS is objective. We'll set the bar at 80 degrees Fahrenheit. That would mean, regardless of whether you enjoy how 80-degree weather feels, the moment the thermometer hits 80, your symptoms would start to flare.

Everyone's heat fatigue is different

But this obviously isn’t the case because I know that if I try to go on a short walk in 70-degree weather, I’ll quickly notice that my vision starts to blur and that my feet start to drag across the floor. At the same time, I know people with MS who live in much hotter climates than I do and who are still able to regularly go for walks in 90-degree weather! They really don't even seem to mind! How is this so? Well, based on that detail alone, I would conclude that there obviously isn’t some universal benchmark for what “hot” is when it comes to MS. Simply put, everyone's definition of "hot" is different based on what temperatures trigger their symptoms to flare.

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The temperature our MS is comfortable in

Sticking to the above example, my body’s limit for heat is in the 70s, but other people’s limit is somehow in the 80s-90s. Maybe they're just used to hotter temperatures than I am? Wondering this, I’ve tried to slowly acclimate to warmer and warmer environments by slowly adjusting where I set my A/C’s thermostat. While I’ve definitely become less uncomfortable in temperatures that I previously felt were slowly killing me, I’ve still noticed that my symptoms tend to flare up around the same time. Why is this? Why is it that temperatures that other people living with MS would consider to hardly even be “warm” are so detrimental to others like me? What is it that determines what temperature our MS is “comfortable” in?

Finding the goldilocks zone

Really quick, it’s not just the heat either. It, without a doubt, works both ways; some people with MS are really sensitive to the cold, sometimes more so than they are to the heat. I’ve even come across people who have no issues in triple-digit weather but are utterly destroyed in 50-degree weather. At first, I found this to be odd because for me? Sure, cold weather will make my spasticity flare up and cause me to become painfully aware of something called Raynaud’s phenomena (where smaller arteries in extremities constrict excessively in response to exposure to cold) but I would consider “cold weather” to be between 0 and 30 degrees. Despite “a little” Raynaud’s, I still feel much better overall in such a cold environment. I would say that 30-degree weather is my personal “goldilocks” zone. Not too hot, not too cold, but juuust riiight. But to others? Their goldilocks zone might be in the 60s, 70s, or 80s; clearly not at all the same as mine.

No two people with MS are exactly alike

I guess it supports the concept that no two people with MS are exactly alike. Even if they both say that they are sensitive to heat, their definition of what “hot” is might be completely different. Similar, but not the same. Just something to think about the next time you hear someone with MS talking about summer or winter and how they can't handle what you can.

What would you consider to be your "goldilocks zone" when it comes to temperature? The sweet spot where you don't feel too hot or too warm; the temperature you would make the entire planet if you could? Share below! I want you to notice the range of different answers that people will probably give.

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