Friday, May 11, 2012

Do you panic in the sun?

Julie Stachowiak, PhD 

I'd like to think that I am a rational person, guided by logic and good common sense, but then it gets hot outside and that goes out the window.

Like most people with MS, I am heat intolerant. Many of my symptoms get much worse in hot weather. I am pretty much constantly fatigued, with a headache. I have tremor that makes it hard to do tasks requiring precision with my fingers, such as typing a message on my phone. My feet tingle throughout the day and feel like they are on fire at night.

Despite all of these increased symptoms, I can hold things together pretty well. The big exception to this is when I am in direct, hot sun. Then I get literally frantic. I actually get scared at how quickly I lose control of all rationality in that situation.

An example of this is when I pick my girls up from school. Even the walk across the parking lot and down a short stretch of sidewalk can bring me to the edge. If one of the girls has to stop while we are in the sun to do anything – tie her shoe, save a ladybug or pick up a pencil that someone has dropped – I lose it. I'm sure I sound deranged as I scream, "You know Mommy can't be in the sun! Hurry up! This is making Mommy freak out!"

I have had similar incidents with friends who innocently choose to walk in a straight line across a sunny patch, rather than dashing from shady spot to shady spot. Even the dogs have been on the receiving end of my crazies when they pick the wrong place to stop and relieve themselves.

This is not just unattractive. It is also not fair to the people (or animals) who I am with. On top of that, it really is a scary feeling to get that out of control.

I have been trying different things to minimize my reaction to being in direct sun. Here are a couple of things that have allowed me to be calm in the sun for limited amounts of time:

Wearing a hat: It is not just the physical discomfort of being in the sun that causes me to get so frantic. The brightness of the sun also makes it seem so much more dramatic. I have found that wearing a hat (that’s right, a big, floppy hat like your mom used to wear at the beach) makes me feel much more comfortable in the sun, despite the temperature.

Carrying a cold drink: I got the tip a long time ago to freeze plastic bottles filled with water or diluted juice and to carry them with me. I can drink the liquid as it melts and hold the bottle against my neck or face to cool down.

Pre-cooling: Before I go into the sun, I sometimes take a cold shower. Making myself uncomfortably chilly buys me some time in the heat.

Those are just a few of my little workarounds to tolerate short periods in the sun. Of course, I realize that all of this can be avoided by staying inside in a cool, dark house from May until September. However, like most people, I have obligations that make this impractical. Besides, it doesn't sound very fun.

I am in no way advocating that people with MS (or anyone for that matter) spend a great deal of time in direct hot sun.  The days of hanging out on a towel at the beach are in the past, due to the risks of skin cancer.  However, being able to get from place to place during summer months will usually require some moments in the sun. A little preparation can greatly minimize stress and make it possible to actually have a good time during the hot seasons.

Do you have any tips for surviving the sun? Please share them with us.


  1. After 16 years of dealing with bad summers (Virginia and now Arizona), I find that if I can time things correctly, it helps out immensely. Often I find myself looking at a clock, and figuring out the most amount of time I can be without rest/shade/cooling before my body gives out on me. It has helped in allowing me to do my favourite hobby: Theme parks.

  2. I hear tell that "cooling vests" work well. I have yet to check them out. Looks like a cold-water bottle worn around the trunk. I just can't have it touching my neck because of nerve pain, otherwise, I think they look like a grand idea! Sarah

  3. My favorite line from any Seinfeld episode issued from the character, Elaine as she referenced Hell: "The heat, my god, the heat!" And I live on South Florida so it's something that informs my life [sigh] always.

  4. I currently don't suffer that much from direct sunlight but I do find it strange and slightly ironic that lack of vitamin D is seen as a cause of MS especially with sunlight being one of the main sources. Fortunately living in Britain I don't have to worry about too much sunlight and heat as it rains too much! :)

  5. I LOVE my frogg toggs "chilly pad" (cooling towel). Although I try to avoid extreme heat whenever possible, my daughter does summer swim team and the hot & humid North Carolina afternoons just goes along with it. Got a chilly pad at Dick's Sporting Goods a couple of summers ago and it really helps me.

    1. Just went to find out about ordering one of these, and they are out of stock. :(

    2. I will have to check into that too. I am a school teacher and with Field Day coming up, I am incredibly stressed about how hot it will be. I will have to get some of those cool patches you can get from Walgreens and put a few on to help me out. Ih hate to stress about something that is not even here yet, but worried about how it will affect me. Last year, my legs got so tight from being in the heat and I am usually exhausted the day after.

  6. The heat of the day is most frightening for me. As with Jule, I feel myself getting more and more frantic, the longer I am out in the heat. I feel myslef twitching, shaking, my legs get weak, my mind finds it most difficult to comprehend and retain what I am doing, I become no longer to multi-task (pull weeds AND put them in the trash bin). If I don't run for (or now pick up) the hose and just completetly douse my brain stem and head until it's cold, I become a twittering idiot, then I'm usually found roaming and rambling the property.

    I keep water to hydrate me, I keep a water fizzer on me to keep me cool, I tug a bimini umbrella with me, and the heat creeps in anyhow.

    I have a cooling vest, bought 3 years ago for $250, I hardly wear them now because the vest itself is so hot and the cooling blox are so cold, Trying to lower my body temp to low too fast. They are great in that the blox regenerate their frozen state by simply being soaked in cold water, no freezing or ice needed.

    A Pool. I have aske for a pool in the back yard where I can jump into when the exacerbations from the heat begin. However, Two old crabs and one cool chick live here -- LOL! The are now arguing over the cost of the sand for under the pool.

    The cold makes my hands and feet useless. We ar moving North and will be building our own home. You can be guaranteed that any tiles and concrete floors will have heating in them. :)

    Fatigue has me now, my right leg has a numb streak from the ankle to the upper hip, the width of my hand.

    Solu-medraol? 3 days? My guess. What will be my doctor's guess?

  7. I had an incident recently where my husband and I went from point 'a' to point 'b' and were outside for less than 2 minutes. When we got to the car I could not get in, he had to lift frusterating!

  8. I didn't care for cooling vest but I have used a cooling collar for years with much success. I also use extra dark fishermen sunglasses that dim light from sides to feel cooler. I act like a drunk if I overheat so I warn someone in advance to warn me if they notice.

  9. Sun is hard for me too but the Humidity....forgetaboutit !!!
    That's when I'm inside the house in the AC. I do use hats, and a white umbrella that helps. When I go to garage sales, I have a remote start on my car, so I let it run and its nice and cool when I get back in the car. I do have a pool and I hang out in it and actually get a nice suntan, yeah I know cancer, but comon I got to be able to do some summer things !! I have tried to cover all my bases with the sun and summer, but my numbness gets worse, my walking gets worse, the fatigue feels worse in the summer. I have tried the neck cooling things, they work good, before we had AC I took a lot of cool showers, you just figure out what helps you cope and then do it

  10. when I start to overheat my brain feels like it is going to melt right inside my head! no kidding. when feeling comes on I can't think straight, I get panicky and temperment wise can become almost explosive if I can't get to a cool shower quick enough or at least some kind of faucet to soak my head and hair in cool water. Forget about fancy hairstyles during the summer, most time I run around with wet hair up in pony tail all day long just to keep cool. A straw hat of some kind and sunglasses are almost total necessities for me in the summer heat. Sometimes when it is so bright outside my eyeballs actually HURT especially if i am in an area where there is all buildings around that seems to make the brightness more intense. I have been known to get out of my car with my eyes closed and walk the steps by memory from the car to the building when the eye pain comes on. It is crazy. I too have almost nil Vitamin D in my body. My body won't seem to hold vitamin D at all. I have lost count of how many times I have had to 50,000 units of Vit D for eight weeks at a time. No matter that I've spent my whole life outside from nearly sun-up to sun-down. I still get outside and make myself sit at least half hour daily in sun even if it's just my legs. But for some reason my body will not retain the Vitamin D. There is something more to this deficiency that is eluding the doctors. Can't wait until they can figure it out.

  11. My mother here in Texas just hibernates most of summer. Before we go anywhere big glass of ice and another of her iced beverage then a cold rag for forehead and neck as needed. K always cool off car and she still needs help with right leg lifting in vehicle. Wish there was something else.

  12. I am at the 12 yr. mark of my MS. I have other medical issues besides the MS, but I have to have the heat. I hurt worse if not. Fatigue, yes I have, but I battle the fatigue better than been cold or rainy. I wear dark shades though that helps the eyes. But call me crazy but the heat, I love it, I stay out all summer, enjoy our pool, I want in the middle of the day instead of evening. I always have cold/frozen water bottles with me constantly. Stay comfortable and stay happy. Do what works for u.

  13. I am at the 12 yr. mark of my MS. I have other medical issues besides the MS, but I have to have the heat. I hurt worse if not. Fatigue, yes I have, but I battle the fatigue better than been cold or rainy. I wear dark shades though that helps the eyes. But call me crazy but the heat, I love it, I stay out all summer, enjoy our pool, I want in the middle of the day instead of evening. I always have cold/frozen water bottles with me constantly. Stay comfortable and stay happy. Do what works for u.

  14. I am pretty heat intolerant as well. Last year I traveled in Tuscany (hot!) with a lightweight cotton scarf. I wet it and wore it around my neck, replenishing anywhere (water fountain, water bottle, restaurant etc). It kept me reasonably cool (pun intended: no flashes of anger or panick),and looked cute with every outfit, you could hardly tell it was wet. 10x more effective,convenient and attractive than those gel collars!

  15. About 15 years ago I looked out the window to see my husband standing on the hill in our backyard like a statue - I went out and he had gone totally blind. We were lucky that his site did return after a few hours - now he wears a hat, dark sunglasses and "cool ties" that my sister made for him when outside. She made ties filled with gel beads, we soak and refrigerate them. I also sewed some pockets into a shirt so he can insert gel ice packs. My own cheap "cooling vest" - gel packs cost a couple of bucks at Job Lot. When we decline outside parties I tell people "my husband is a bat, or a cellar dweller". He needs lots of shade and air conditioning.

  16. Here is a comment for your debate.
    I was up for a visit in Canada in august and had energy levels that were incredibly higher than here in Florida.
    The change was immediate.

    Elevation is 600' plus above sea level.
    Humidity is low in the North.
    Coriolis effect northern region.
    Distance from the equator around 5000 miles.

    Sarasota is 15' above sea level.
    Sarasota high humidity year-round.
    Coriolis effect southern region
    Distance from the equator around 2000 miles.

  17. I live in Chicago, where we have "Ozone Action" days & "Extreme Heat Warnings/Emergencies", generally late May through September. I've been to So. Florida, Las Vegas & Scottsdale but theses places pale in comparison to Chicago's dreaded summers.

    That said, I generally equate my experiences to that of a car without anti-freeze: I'm OK (if briefly) but eventually over-heat & "lock-up". To a point where I can't/don't move anymore.

  18. I have horrible heat problems - last year I had to run into Target to get something we'd forgotten for my son's birthday party and barely made it through the parking lot to the store (mid-July). I haven't pulled the trigger on any 'disabled benefits' yet, but I'm pretty sure that the first thing I'll take advantage of is the hanging tag so I can parking in the handi-stalls on those days.

    Quick tips: I have the vest and the collar. The vest is pretty bulky and not practical unless you're going to be in the heat for an extended period of time. I take the collar with me frequently, though. It's small and convenient. Another thing I've had success with is putting an ice-pack from my meds cooler (the square block) into one of those cheap tool/money belts (the kind volunteers wear for games at the fair: cloth with two pockets - you tie it around your waist). I get new ice packs every month and the belts are something like $1 at Home Depot or Menards. Your pants might get a little wet, but it works well! Throw it away if you don't want to carry it around with you...

  19. This will be my second summer with MS. Actually I love the sun and the warm temperature but I feel that MS and I do not agree on that. So I try to enjoy the warm weather and in the same time, I take care that it is not too much for my body. Funny think is, if it's about 25°C and I'm sitting in the shadow with a T-Shirt I'm getting a goose flesh and I need a jacket :-)
    What it's worse is the up and down in temperature, like the last few weeks we had in Switzerland. 2 weeks ago on a Friday it was 30°C, hot and oppressive and the next day it was cloudy, rainy and about 15°C. That is too much for both of us, my MS and me. My legs were unstaedy, they were weak, my hands were sleepy, I couldn't sleep at night and during the day at work I was kind of edgy and bitchy. My left side on the face felt numb. We had a long weekend and I had two days a good sleep (thanks to medicin) and after 10h of constanc sleep I felt much better. Today it's about 19°C and cloudy and it looks like we have it the whole week. Good for my friend MS :-)

  20. The heat thing is probably my worst symptom. It affects everything. Even NOT being in the sun, the least little bit I exert or NOT exert, I have severe, hot, sweating spells that I feel I am coming out o0f my skin! I have a pool but use it mostly in the evenings. I live in Alabama. One other thing that keeps me out from the day time heat , sunning, is this fentyl patch. It can release too much when overheated. I miss the outdoors being an outdoor person all my life. I am glad to hear from all of you on this issue. I am blessed with a wonderful new husband, first marriage at 45 yo. He is my rock next to Jesus, my caretaker and my true love. God bless you all.

  21. I live on the Jersey Shore and worshiped the sun for decades. With four kids, if we weren't on the beach by 8 am I felt the day was wasted. It is only in retrospect that I remember how I struggled if it was too hot. And this was way before I was diagnosed. I even wilted in the heat as a child. Those hot New York City days found me curled up in my room with a book while my friends were all outside playing.

    Now I don't budge from the AC if it is over 90 degrees. To do so is just asking for trouble. The heat ramps up every single MS symptom I have and renders me incapacitated. Luckily I have the luxury of both being able to stay in when I need to and to have the air conditioning at all. Otherwise I don't know how I would manage.

  22. I am also heat intolerant. I stay indoors out of the sun/heat. I have two dogs who I unfortunately can only take out with my scooter. Heat makes me turn my legs into spaghetti so I avoid it like the plague. I also have the luxury of not needing to work thanks to my husband. We have no kids and have decided to not have any. I have nephews niece and cousins.

  23. I wear open sandals with very thick soles to combat hot parking lots and sidewalks - it's amazing how much heat travels up my legs if I don't. Another trick: having cute and cheap (Dollar Store)Chinese paper umbrellas available to give my head an airing out from the hat.

  24. I was diagnosed with MS January 1995; I have been on gilenya since March 2012...Heat to me is a must; cold hurts me so bad:( I am 'no good' under 80*; but humid days & damp weather anytime of the year ruin me.I cannot figure this vitamin D stuff out; I love dairy products, have loved the sun and outdoors my entire life...but my body will not store vitamin D. I have trouble storing potassium too. I was born and raised in Alabama,lived 28 years in New Jersey and retired to Northern Louisiana almost 4 years ago.

  25. I too cannot store vitamin D...and have chronic low potassium. I am constantly in the sun any time it is over 75*, and have been my whole life. I was born and raised in the southern USA,and am one of 3 first cousins with MS; our great grandfather had it.Humidity, lower barometric pressure, rainy days and out door temps. of below 65* cause muscle spasticity and more pronounced weakness in me. I have been living with diagnosed MS since Jan. 1995. I will be 55 in a few months...