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:
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:
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.
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