Summer and MS-related heat intolerance aren’t a good mix
Fatigue, body weakness, and migraines come with the higher temperatures
The summer months and the central Texas heat have arrived, and I feel indifferent about them. As someone with multiple sclerosis (MS) who experiences related heat intolerance, I try to avoid spending an extended amount of time outside. That saddens me because most of the summer fun occurs outdoors.
Before I was diagnosed with relapsing-remitting MS about eight years ago, I used to spend a lot of time outdoors and wasn’t nearly as sensitive to the heat as I am now. As a child, in fact, I practically lived outside in my grandma’s backyard. Whether I was helping my grandma tend to her beautiful yard and plants or playing with my toys, I never wanted to be inside. Many of my favorite memories were spent in her yard, soaking up the sun and feeling the breeze on my skin.
As I reminisce about these fond memories, I realize just how much time I’ve spent outside without being highly affected by heat intolerance. During my preteen and teenage years, I spent countless summer days tubing on the river with my mom, aunt, and brother; going to Six Flags Fiesta Texas in San Antonio; or attending outdoor band camp. But now, after so many years living with MS, all of these outdoor activities are slipping through my fingertips, completely out of my control.
When I think about life before MS, I always gravitate toward my time in the high school marching band. We band members spent hours on top of hours outside, with minimal practice time inside. In addition to being beaten down by the heat during band camp, football games, and competitions, we were also masters of multitasking. We had to play our instruments well, memorize extended and complex pieces of music, march correctly and adequately, remember our formations and spots, and pay attention to our drum majors.
My summers today and to come
Looking back, I can’t quite fathom how I managed to do all of that in the intense summer sun and heat. I don’t think I’m capable of that now, especially with my intensifying heat intolerance and my MS brain fog.
As much as I enjoy the air conditioning and being inside, I’d be lying if I said I didn’t miss spending much time outdoors. That’s not to say that I don’t go outside at all, but it’s challenging to bounce back from heat-induced fatigue. Even spending a couple of hours in 90-plus F weather is enough to take me out for a couple of days. Extreme fatigue, body weakness, and intense migraines come with the heat.
Sometimes I feel as though I’m trapped inside and a prisoner of these MS symptoms. However, as with most things in life, I need to find a balance and expose myself to the outdoors in moderation in a way that won’t significantly hurt me.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Amanda
Hi. This article as an awareness raising piece is great. However, most of the people that read this website probably have MS… I would love to know some of the strategies that you employ to tackle the heat rather than just “balance it.” For me, the most empowering thing managing my heat, intolerance has been to get a handle on or understand my own limits with the heat. Specifically, spend time learning when I have the most energy and do the activities that I need to do at those times a day. Know what temperatures are too much for me and manage my activities based on that fact. I think the thing that is most powerful for those of us that have MS is to feel like we have a bit of control in a very uncertain batch of circumstances. As they say, the devil is in the details and understanding those details lends itself to feeling like we can still have it all.
Ellen
I understand that many MS patients have some kind of heat intolerance. I was 57 when I was diagnosed. That was three years after my younger daughter was diagnosed at age 20.. No one I know in my family ever had MS. Then three years later I was having ms hugs. I did not know what they were and neither did my doctor say much about them. Then I woke up with transverse myelitis and the ensuing MS diagnosis. I am now 77. I can’t say I have a lot of symptoms in heat or cold. I am not crazy about either, but I feel what I think is feelling normal. My daughter’s neurologist said she was doing well enough to come off her ms meds. Three years later after 12 years on meds I stopped the meds as well. Who knows if either of us will need to go on them again. She lives in CAlifornia, now in her early 40’s and spends a lot of time in the sun. I live in upstate ny and spend a lot of time indoors, cause I just want to- no other reason! We have been of MS meds for 5 to 8 years. MS hits all of us patients in such different ways, doesn’t it?!!
Trudy Plank
Just wait until yo get older. I like you used to love the summer. But since my diagnosis of RRMS and reaching 70 yrs. old, the two combined make the heat unbearable😔
Leslie
115 IN AZ TODAY- ditto. For me, I swear I'll let it feel even worse when I see the weather forecast on the news. I get anxious just hearing what might happen 2 weeks ahead, so when it is 115, I'm already doomed lol. Yes, I agree, it's tough in the summer
Michelle Lynn Deitchman
I have the same issues - TX summer is BRUTAL for me. Even if I’m playing in the pool, I’ve noticed how drained I feel afterwards. I have to be very careful and diligent with how I expend my time and energy!! Cooling neck fan with cooling plates has been a lovely assist in last few years.
Rita White
I was very interested to read your column about MS and heat intolerance. My daughter who was diagnosed in 2015, complains the same thing in Australia's summer.
What I was interested, you were always interested in outdoors,so your vitamin D levels must have been optimum, but you still were diagnosed with MS. My daughter never went under the sun and her vitamin D level was extremely low. To me it has to be something else that triggers this condition.
She was treated with Mavenclad for 2 years and she is doing very well with no concerns so far. She is also on whole plant diet with addiction of algae oil and vitamin D3 and few other mineral supplements. I wish you all the best
Like reading your column.
Michelle McDonald
All we MS-ers should have a contest on who is the least heat tolerant. Haha. Personally, I've always been incredibly heat-sensitive. I've been having heat-strokes from the time I was born. My dad wonders if I've always had MS. Now I find myself choking if it's over 64 deg F; the only fun part is that one of my meals is a quart of frozen desert. Don't worry, with my obsessive-compulsive personality, I make sure it is as healthy as possible. I'm an exercise-addict and I refuse to give up my routine; I use a dozen fans on high, soak my head in ice-water, and drink 96 ounces of it. Even then, my symptoms scream. I need my outside time but it must be cold out there. I fell in love with winter moutaineering and ice-climbing years before my MS-hospitalization. Now my husband and I are desperately seeking a move to the mountains - to fulfill my outside-time needs and to help with the A/C bill. The A/C bill is driving us toward bankruptcy. I've had MS for over 14 yrs. No new lesion has been found for some time but the heat-issues are becoming ever-more unmanageable.