It’s summer in Australia and it’s hot. On any sunny day you can see the sweat beading on the brows of colleagues, the damp patches in the middle of back on shirts, everyone gets generally icky. For people with MS, the heat can make their daily experience even worse by exacerbating symptoms, rendering some people incapacitated on those hot days.

This sensitivity is due to the loss of that protective myelin, our damaged nerves become more vulnerable to temperature changes (it does go both ways for some people, hot or cold) so any symptoms we had before become temporarily worse. Many people experience worsening fatigue, blurred vision, weakness, loss of balance, or difficulties concentrating and increasing confusion.

A paper from 2011 showed that almost 60% of respondents in the study reported heat sensitivity so if you’ve noticed some increased activity on a hot day, you’re not alone.

The good news? This worsening of symptoms is usually fixed by cooling down the body and taking time to rest to recover some of your energy. What is reassuring is that the heat sensitivity isn’t a sign that your MS is active, only that it is irritated. BUT, you need to keep an eye on it – if you have a new symptom during a time of hot weather that you’ve not experienced before you must speak to your neurologist about it as soon as possible. If you haven’t experienced heat sensitivity before and begin to, ensure you inform you doctors of that as well.

The heat shouldn’t cause new symptoms, only exacerbate old ones.

Personally, whilst I was on holiday in Vanuatu I experienced some severe heat related symptoms to the point where I thought I was having a relapse as I was unaware of the heat sensitivity. I left that holiday early and temporarily disheartened, believing my MS to be out of control and my desire to travel no longer a viable option. I was pleased when we saw no new activity on my MRI and that my symptoms subsided once I could regulate my temperature more effectively.

What can you do?

Planning ahead is your best tool. In some areas or some workplaces being exposed to warmer temperatures is often unavoidable. For me, I have to spend summer out in the field doing research which often results in long, hot days under the sun. On those days we can change our behaviour – look for shade, take rest breaks as often as possible, drink plenty of water to stay hydrated, if you want to exercise choose a cool or shady place (part of why I use a gym, it’s always air-conditioned).

We can also change the kind of clothing we wear, invest in lightweight loose clothing, wear hats, keeping the sun off your skin keeps you cooler than direct sunlight on your skin. We can use spray bottles and mist our face and neck, take cool showers or baths, or get those portable fans to help cool down.

Don’t forget about frozen gel packs of bags of peas either, applied to the forehead, nape of the neck, wrists, or upper thighs, these can cool you down nicely – though be careful not to apply directly to your skin lest you get a freezer burn, pop a tea towel between your skin and the pack.

There are also cooling towels as well as cooling vests, some which actively pump coolant around the garment ($$$$) and others which have crystals or a gel-like substance in them that cool when activated ($$).

Depending on how much the heat affects you will dictate what you should invest in or what behaviours you should adopt to manage the heat and your MS. You may need to try out a few options to find what works best for you.

Is there anything you do in particular to manage your temperature sensitivity?

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