One of the most well known symptoms of Multiple Sclerosis, at least to us MSers, is heat intolerance. Being exposed to heat, whether it is from being outdoors, being in a hot shower or exercising, can make MS symptoms temporarily worse, which is called a pseudo-exacerbation. Once our bodies return to normal temperature, the symptoms dissipate and return back to their normal state.
During a pseudo-exacerbation there is no actual disease progression taking place, however, while the symptoms are being felt, they are very real! In fact, back in the day before MRI’s and modern medicine, doctors used to use the “hot bath test” to diagnose MS. In this test, individuals who were suspected of having MS were put in a hot bath to see if their symptoms increased. As unpleasant as an MRI is, I’m sure that would be much worse.
Doctors believe a pseudo-exacerbation occurs because heat causes the nerves, which are already are damaged, to perform their functions even less effectively. When body temperature increases, even by a quarter or half a degree, the electrical signals sent between demyelinated nerves are even further negatively impacted. Some of the most common symptoms that individuals experience when in the heat are:
- Blurry Vision (Uhthoff’s Phenomenon)
- Cognitive Difficulties
Strategies to Manage the Heat
Sometimes being in the heat is unavoidable, so being prepared is the best thing you can do! Here are some tips for beating the heat:
- One of the things that has helped me the most this year, is to be proactive about my strategies. Meaning, don’t wait until you’re overheated to act. Use one of these strategies before you feel like you’re about to catch on fire.
- AC is your friend! Staying in the AC during times of high heat or humidity is sometimes a must. Or having a nicely air conditioned house or room to come back to is important. When I didn’t have central air my doctor gave me the hint to make one room an “AC oasis” that is cool 24/7, which should be your bedroom, so you can sleep comfortably too.
- Have ice water, or popsicles on hand all the time. Ice water is one of the fastest ways to bring your core temp down asap.
- Have a personal fan/personal water mister that you can bring with you EVERYWHERE.
- When working out, be smart about your environment. Choose indoor areas that have AC. If you must workout outside, pick morning or evening times when it is cooler.
- Try cooler/cold showers to bring down your body temp too. I really like this after a workout, this helps to bring my body back down to a normal temp quite quickly. If you have a hard time tolerating a cold shower, you can also dip your feet into a cold bathtub or run your arms under cold water or splash your face with cold water as well.
- There are tons of personal cooling vests or articles of clothing that you can purchase that can help for longer term cooling as well. I just started using a Koldtec towel (review soon!) and many others do as well. You can learn more about them here.
- Be smart about your clothing. If you’re at home and feel comfortable, don’t be afraid to ditch some clothes! Sometimes I’ll hang out in just a long t-shirt at home. It’s amazing what that does for your body temp. When I’m out, I’ll wear flowy shirts and loose shorts as well.
- Get shady. When doing outdoor activities, try to find a spot where you can hide in the shade. It may not seem like it, but shade can feel like a huge temperature difference and can make being outside tolerable.
What I’ve found the most helpful for beating the heat is having a place to run back to that provides shade, whether that is an awesome beach tent or big tree, something that provides relief from the sun’s rays is key. I’ve found that sometimes in the shade it feels 10 degrees cooler than when in the sun. I also like to have a cooler with ice water with me. Yes, this means lugging a cooler to the beach, but in order to make my beach time fun, this is a necessity. My last thing that is key? Running in and out of the water. Obviously this isn’t always do-able if you’re not at the beach, so bringing some way to apply cold water, either a personal mister or cold towel or even having a mini AC handy is important.
But most of all, make sure to advocate for yourself and your comfort. Thankfully, my husband knows me better than I know myself, and will be able to tell when I’ve had enough. But sometimes I’m not with him and I need to speak up on my own behalf. You deserve comfort as well as any other person. Please don’t let fear of “ruining” a summer day keep you from saying what you need.