It’s that time of the year; summer is right around the corner, or, it’s already here, depending on where you live I suppose. Well for me, here in the “desert” of Southern California (roughly 30 minutes from Palm Springs), summer has been here. But now summer is about to get real. We have been in the 80’s and 90’s for a while now (sometimes peaking in the low 100’s) but by the end of the week we will be hit by a heat wave and we will see at least 110. Palm Springs is already hitting 115 and 120 is not unusual! I am really sensitive to the heat, if it is over 80 I usually do not venture outside of my air conditioned room. But this year I am in a panic, I expect that it will be an especially hot summer where 110-115 is the norm (I am no expert but I follow the weather pretty closely) and as my health has been pretty unstable lately I dread to think what a day in this heat will do to me if the power goes out. So since this has been on my mind for the last week or so I thought I would take a moment to explain how the heat can affect people with multiple sclerosis and how it affects me since I am so sensitive to it.
Many people with MS experience a temporary worsening of their symptoms when exposed to heat whether it is going outside on a hot summer day, taking a hot bath or overheating from exercise. I have even talked to someone who said she would get pins and needles if she used a hair dryer! The technical term for heat sensitivity in MS or other demyelinating diseases is Uhthoff’s phenomena/sign, which is named after William Uhthoff, a German professor of ophthalmology who first described this apparent worsening of symptoms (when patients were exposed to heat) in 1890. Before the invention of the MRI machine people were diagnosed with MS after being put in a bathtub full of hot water to see how they reacted. This is mentioned on the National MS Society’s website if you want a reliable source for this widely talked about piece of MS trivia.
I can remember being a child; we lived near the ocean in Costa Mesa, CA and we would often go to the beach after school. I remember the feeling of the sun blazing down on my back while I played in the sand; all I had to worry about was my Mom wanting to cover my face in sun tan lotion. I hated that. Then as a teen, I can remember often being out in the desert riding dirt bikes or exploring trails. I didn’t like the heat but then again who did? I could deal with it just fine. But after I was diagnosed with MS? Things slowly changed. I started to notice that the heat really made me feel tired so I stopped going out in the summer. When I did try I would notice that my vision very quickly became really blurry! Over the years I got progressively more sensitive to the heat. Now it does not even take much; when I am inside where there is no cool breeze I start feeling really uncomfortable when it is just 75 and outside where there is a breeze my limit is usually about 80. My vision does not really seem to suffer like it did before but the heat instantly drains me of what little energy I had to begin with, makes me dizzy, weak and nauseous. But worse of all is definitely the fatigue, it feels unbearable, like I am going to pass out if I don’t jump into a cold shower!
It seems the heat can make most anyone desperate to cool off but add the MS heat sensitivity into the mix? I have been desperate… There were times that I filled the bathtub with ice water and just sat in there till it all melted because I felt so unbearably hot! Almost like my body could not regulate my temperature properly! I have tried attaching a fan to the A/C vent before to try to suck more cold air out into my room but it didn’t work that well but again, I was desperate. I bought a cooling vest (basically a vest you fill with ice packs to stay cool) because many people with MS say this helps a lot but I personally felt like it didn’t help, like my body was producing so much heat that the vest was just trapping it in and making me hotter. Probably not what was actually going on but that is how it felt. That’s the problem with hot weather, you can only strip down so much, you can’t take your skin off. At least in cold weather, you can keep adding layers! Sometimes I will take a shower and not fully dry off when I get out so I can just sit in front of a fan! Currently, my entire room is covered in sheets of Styrofoam insulation to try to keep the heat out and cold in but this has it’s problems as well but my point is, the heat can make you desperate when it makes you feel like such garbage!
Now I do recognize that many people are sensitive to the cold as well, particularly those who suffer from spasticity. When I am in an environment that is really cold, as in around 0-10 degrees, I can start to feel this myself, usually if I am not moving around which quickly raises my body temperature. My spasticity does seem to get worse and I also suffer from what may be an early onset of “Raynaud’s Phenomenon” (where smaller arteries narrow and restrict blood circulation usually affecting the hands and feet), which can be pretty painful. So it would seem that avoiding either extreme is key in MS. So obviously you want to try to stay in an environment with controlled temperature, watch the temperature of your beverages and food, be careful exercising (maybe stay by a fan) and use cooling products such as a cooling vest or a neck wrap.
So I have to say, when someone with MS complains about the heat it is not just a matter of preference, it actually does affect their health. Heat causes nerves to conduct electrical signals less efficiently, which obviously would affect someone with MS since their nerves are already conducting electrical signals poorly.
Extreme heat can be dangerous or even deadly to people without MS so for people with MS? It is very important to avoid! There are lots of little tricks I have used to stay cool and lots I still do that I did not mention here. What do you do to stay cool? What advice to you have for others that may help them survive the summer? Does the heat affect your symptoms or are you more sensitive to the cold instead? Share below!