Keep Your Cool

It’s that funny time of year in New England, when the weather can’t make up its mind. One day will be cool and cloudy, the next scorching hot and sunny. And some days present perplexing combinations of conditions. The other day, for instance, I took a bike ride with a girlfriend. Neither of us quite knew how to dress, as the day was overcast but also quite muggy and buggy. Ugh.

For those of us with multiple sclerosis, that kind of situation can pose more than the average amount of discomfort. Many of us find our MS symptoms are aggravated by the heat, and simple decisions such as what to wear on a bike ride can affect us pretty profoundly.

The National MS Society offers useful information for folks with heat-sensitive MS. I love that one of the ideas is to indulge in “icy drinks like ‘slurpees.’” I am always looking for an excuse to grab a Slurpee, especially now that my kids are grown and I can’t use THEM as my excuse!

Another of the suggestions is to exercise in a cool pool. That sounds great, and is probably a great solution for many folks. For me, though, bathing in a cool pool is likely to trigger my other chronic condition, Raynaud’s phenomenon . Our backyard pool stays pretty chilly throughout the summer, and since we don’t have air conditioning, it offers welcome respite from the heat. But when I do take a dip, I have to accept the consequences: My fingers and toes turn a waxy yellow and grow numb as the capillaries contract in response to the cold. The recovery is even worse: As I eventually warm up, usually by holding my wrists under warm water from the faucet, my fingers are splotched with purple, blue, and red. It’s ghastly.

Still, that’s small potatoes in the grand scheme of things. It’s a tradeoff I’m okay with making.

Do you struggle to maintain the optimal temperature for managing your MS in the summer? What are some of your strategies?
 

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Jennifer

Jennifer LaRue Huget, Blogger

Jennifer LaRue Huget was diagnosed with MS in 2001. A freelance writer and children's book author, she lives in Connecticut with her husband, two teenage kids, and two brown dogs. Her website is www.jenniferlaruehuget.com.

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    21 Comments

  • Eli   Jun 26, 2014 1:32 PM
    Yes, keeping symptoms from going wild in summer heat can be tough. Part of my defense against MS is constant exercise which raises my body's temperature. I have found that nothing brings my body temp down as quick as a cold shower.
  • Iris Miller-Smith   Jun 26, 2014 1:52 PM
    The summer is a real problem for me. Once I get overheated I affects my concentration, speech and coordination. I find the only thing that helps is taking cold showers- at least 3 during the day.
  • Lori   Jun 26, 2014 2:14 PM
    I struggle with the heat, and find that having MS and going through the menopause gives me a double whammy when overheating, this makes me shaky and nauseous , I usually find that sitting for a while in a cool place, or near a window helps, I have not resulted in cold showers and resting as much as possible seems to help..... Doctors struggle to answer any questions when I see them as they are not experienced in MS symptoms .... But I have learned to manage things the best way I can... As we are all individuals with symptoms that vary from person to person
  • Chris   Jun 26, 2014 2:18 PM
    Yes , summer time affects me also . I try to avoid going outside during hot and humid days unless it's a good reason . I have stored energy for when I do go outside during difficult temperatures . I'm an outdoorsman and absolutely live the woods , so I'm always trying to get to the woods and tend to ignore my MS and deal with the repucusions later . I find that warm baths and showers help me and shade and cool air and water helps also . I use cannabis for all my ailments and it always helps . When my MS acts up while outside , it affects my speech and coordination.
  • Lindy   Jun 26, 2014 2:39 PM
    I too have heat sensitivity and it really affects my speech in that if I get too overheated, I cannot speak at all. I have this panicked look on my face and people often think I am having a stroke. So I have created a card that has my name, my contact information and a statement that I have MS and sometimes when I am overheated, my mind gets foggy and I cannot speak. This is not life threatening, I just need to be in cool, quiet place, ice water, or cool cloth out of the sun should help. Please contact one of my emergency contacts as they can assist me.
  • Susan   Jun 26, 2014 5:39 PM
    Kansas Summer heat is hard for me and I get needed relief from Polar Breeze Bandanas. I wear a cooling neck wrap and get instant heat relief! I also have a cooling hat that I wear when I need to be outside. I got both of these products at www.polorbreezebandanas.com
    I'm a teacher so I need to be outside for recess duty. I bring a lunch tote with an icepack and my cooling neck wrap that I can easily take out and wear as needed. I find daily needed relief from my cooling neck wrap on those hot and humid days!
  • Anonymous   Jun 26, 2014 5:46 PM
    At work, when I feel the fogginess come on, I run my wrists under cold water for a minute. I also take a papertowel, run it under cold water, wring it out and put it on my neck for a minute. Obviously I keep a big glass of ice-cold water close to me and dress in lightweight cotton.
  • Angi   Jun 26, 2014 6:19 PM
    I have learned to pace myself in the summer, especially now with menopause and hot flashes. Sitting in front of the window A/C with a cold drink helps cool me down enough to keep going, and exercising in my pool helps too. Some days it is just too hot and I just allow myself to have a lazy day without feeling guilty about it. Also, if you have any of the gel packs for muscle strain that you put in the freezer before use, wrap one in a small towel and put it on the back of your neck. It helps!
  • Tammy Kelly   Jun 26, 2014 6:38 PM
    I have a pseudo exacerbation as soon as my body temperature raises ever so slightly. It can get so bad that my whole body shuts down and walking becomes nearly impossible. My vision gets very blurry and I just melt into a puddle of jello. I feel paralyzed. Even breathing is hard. I couldn't manage without air conditioning. I lie down near the air vent for a while, then get up and go on my merry way (inside). Today I ate 3 Popsicles. 😊
  • Wendy   Jun 26, 2014 6:54 PM
    These are all great ideas! I found that Evening Primrose Oil helped me during Menopause.
  • Nan   Jun 26, 2014 7:33 PM
    I just got a USB based fan for my office. I work in an IT Help desk with one computer and 3 monitors. I was surprised today how much breeze it gave me straight where I wanted it - on my face and torso. I may get one or more for at home.
  • Avatar
    refusetoquit  Jun 26, 2014 7:58 PM
    In reading everyone's comments, the biggest help with the body's symptom's with heat, is EXPECT it..................wet towel's, ice pack's, spray bottle, cooling vest's, cooling headband's..............ibuprofin...........BE READY , you KNOW what happens, plan for it. coolimg the brainstem works great If it catches me off guard, ibuprofin is my last resort to reduce inflamation (bathroom transfers)
    MANAGING BEFORE, KEEPS US IN THE GAME
  • Michelle   Jun 27, 2014 1:49 AM
    Shared solutions has a cooling vest for those unbearable hot days
  • Avatar
    Bobo  Jun 27, 2014 5:20 AM
    I think the best protection is to plan ahead-it's summer! Whatever works for you is the key, even if it means staying inside with AC most of the time. I find that a cooling vest (homemade) works for me so I can enjoy my outside gardening time, and I time it so I'm back inside before the sun gets too warm. Look for a pool, usually designated as a lap swim pool, where the temperatures are kept between 81 and 85. I can exercise in the pool to my heart's content, and enjoy the many aerobic pool classes at the local Y. Stay cool! Cheers.
  • Avatar
    vicric  Jun 27, 2014 7:10 AM
    I also struggle with heat - I become numb and have pain on my left side, my speech and cognitive functions also become impaired. If I can be in air conditioning - it works great - I also try to stay in at the hottest parts of the day. For me it is heat + humidity that really brings the symptoms on. So I have a dehumidifer and a fan - that seems to help and I am getting a cooling vest. I will try running cool water on my wrists at work. Thank you all for you comments.
  • Avatar
    refusetoquit  Jun 27, 2014 8:28 AM
    Anybeth, your explanation for the body's regulator helpped me realise what I'm dealing with.........I don't sweat and hands and feet are cold but I'm always warm. Tankyou

    Bobo, I too enjoy the outside but it's been a cruel winter and now humid summer here in Wisconsin..............'heat' is better than 'humid' for me. I guess it gives me something to always manage in my day.........I'd rather be managing my Salon, it was easier. lol Have a cool day, everyone!
  • Kim   Jun 27, 2014 5:24 PM
    Not as much of a struggle as it has been in previous years. Learning to stay ahead of the problem has been the best answer for me. If I am going to be outdoors and away from the A/C, I have at least one insulated glass full of ice and water, wide brimmed hat, and cooling neck kerchief. I don't use all of them all the time, but at least one, depending on the situation.
  • Leanne Clark   Jul 1, 2014 4:27 PM
    The best thing I have done for heat this year was having my car windows tinted for $169. I haven't broken a sweat in my car yet this year and I live in Kentucky! I've had MS for 34 years and this was one of my best decisions to help with one of our biggest challenges. I highly recommend it. It's so worth the money. I have been able to do all kinds if things I couldn't do last year. :)
  • Avatar
    refusetoquit  Jul 7, 2014 8:11 PM
    sonne, I live with my parent's now and STILL am having a hard time getting them to understand the weaknss with heat and MS. Tonight,............FINALLY, father may understand.......... being that it took 40min to transfer to the toilet with no AC on during our hot day. I think they/others think we're 'drama' queens.

    I'm done trying to make those around me feel better by not saying something, or DO something to make me cooler. I no longer try to explain. Prior to the diagnosis, I ALWAYS had difficulty with heat..........husband didn't understand me, neither did I. The idea I woke up every morning with a new way to 'anger' him was understood FTER our divorce. One month later, I got my diagnosis.

    Maybe your husband could read other's comment's here to try and understand. Hope you can get past the need to explain all the time.......I guess educating them is the best you can do..........but for those not getting it, they aren't worth your time explaining. Take care
  • Cori Linsteadt   Jul 28, 2014 10:40 PM
    I have only been diagnosed for a year and a half now, but I am finally figuring out what works better for me so I thought I would share. I know this sounds crazy but I always have a little spray bottle of water and peppermint oil. I spray it on the back of my neck and on my back religiously throughout the day. It also helps with head pressure and fatigue but is really keeping me cool. I live in south Texas so I had to find a way to deal with extreme heat and this has done wonders! Just thought is share.
  • John   Jan 26, 2017 4:45 AM
    Anyone try to use this cooling neck wrap https://gadgets-reviews.com/review/223-best-cooling-bandanas-wraps-scarves.html ? Want to know, it is good idea to wearing it when the weather will be hot.