Coping with MS and Summer Heat
It’s summer and I have Multiple Sclerosis (MS). I am also experiencing hot flashes, but that’s a whole other topic. As I was saying, summer heat and MS just don’t mix. I went outside to my screened porch to write this article so I would literally be writing from experience. It’s sort of like the immersion you would experience as an exchange student in high school. Except not as fun.
Help Me, I’m Melting
I lasted for the time it took me to write the above paragraph. I am now inside in my air-conditioned home. Whew! That did not go as planned. Alas, I was not an exchange student in high school, either.
When you have MS and heat intolerance, summer is your sworn enemy. As I sat in the heat and began writing, it didn’t take long for symptoms to send me running for cold air. Muscles jumping in both legs and my face, my fingers began to melt together, and my brain turned to mush. There were no more words flowing from the creative crevices of my brain. Hello, Frank (the name of my MS — no offense to any wonderful Franks out there). Just checking to see if you were awake.
The Mess That Is MS
Evidently there is a scientific explanation for this. Heat intolerance and temperature sensitivity is common among people with MS. In fact, the “hot bath" test was used in the 19th and even early 20th centuries to diagnose MS. A patient who was thought to have MS was placed in warm water, and if their neurological symptoms worsened, it was seen as proof that the patient had MS. Other symptoms, besides melting, include:
- Blurred vision (Uhthoff’s sign)
- Fatigue
- Loss of balance
Be advised, heat does not cause new symptoms; it just makes your present symptoms worse. How do I know? Well, besides scientific evidence, when I left the heat, my symptoms returned to normal. Wait. I mean MS normal, not normal normal.
Too Darn Hot
The sun is not the only heat source that can deplete your energy stores and cause your symptoms to worsen. Here are some other common sources of heat:
- Fever
- Central heating
- Vigorous exercise (why would we do this anyway? I prefer mild exercise)
Once your core body temperature returns to its normal, the symptoms should subside. If you are noticing that they are not going away, consult your physician.
Ice, Please?
Thankfully, there is relief if you find yourself melting.
- Cooling vests, or similar items are great for cooling off if you can’t get to an air-conditioned space. Even a cold, wet towel can offer some relief.
- Drink cold fluids or tap into your inner child and have a popsicle. Or many popsicles. Whatever. Pour cold liquid over your head, even.
- Wear lightweight, breathable clothing. Flowy dresses are a must. Or a tank top and basketball shorts.
- If you normally exercise outside, try it in a nice, cold pool (less than 85 degrees, because, well, MS). I also now take cool to cold showers. It feels great and not only keeps Frank at bay, but also the hot flashes, of which, we shall not speak.
The Source of This Treachery
When you have MS, your immune system attacks the protective coating (myelin) around the nerve endings. After the attack, your body tries to heal and makes scars (sclerosis) which interfere with the signals being sent from the brain. Where scars are formed determines which symptoms you will experience.
If your symptoms worsen in extreme temperatures, you probably have a scar on the part of the brain that controls body temperature.
Things to Remember
You Can Still Be in Control
Having MS is no walk in the park — which we should avoid in the heat anyway, unless we have cooling gear. After all, there are many things to juggle: our body attacking itself then trying to heal itself, avoiding symptom worsening triggers, finding the right medications, mapping out our trip from the living room to the kitchen and back. It’s a mess! But we can have a little control of that mess.
Be Mindful of Your Limitations and Make Observations
I need little reminders of what activities cause symptom worsening. I have a little whiteboard hanging on the wall next to my bed, so I see it first thing in the morning. I also have mini sticky notes that remind me to take it easy. I am not a person that does well with limitations, and sometimes I forget that I cannot just get up and go anymore. I have a sticky note that reminds me of that. I write what I would like to do, what I think I can do and what I actually was able to do.
Find Support Systems and Create Solutions
Friends and family that truly understand you and your MS are invaluable. I have a close friend who has to constantly remind me, when I’ve overdone it and am in bed for a week paying for it, that I have to take it slow. I have to work with Frank (my MS) and not fight him. I need to remember that I can still get my summer tan, I just have to be in the pool, not beside the pool.
Final Takeaway
There are many things we can do to help keep our symptoms in check. Be smart. Stay in contact with your healthcare provider. Let your friends and family help. Grab something cold and enjoy the rest of summer! Don't let MS and summer heat stop you!