Summer Heat and Multiple Sclerosis

Summer time brings to mind beaches, swimming, vacations, outdoor activities with your children. For those with MS, it means that but it also means cooling vests, air conditioning and if your MS gets aggravated by the heat, increased symptoms. This effect was first noticed in 1824 when Charles Prosper Ollivier d’Angers put a patient in a hot bath and noticed worsening symptoms. Wilhelm Uhthoff noted that this not only occurs with patients in a hot bath but also with increased core body temp due to exercise and activity.

“Demyelination produces alterations in saltatory conduction, slowed conduction velocity, and a predisposition to conduction block. An estimated 60–80% of MS patients experience temporary worsening of clinical signs and neurological symptoms with heat exposure.”  In addition, lesions can occur in parts of the brain that manages temperature regulation.

A report on hypothermia in MS lists different MS patients who died due high temp levels and the inability to regulate their temperature. A temp of 32 degrees Celsius (89.6 Fahrenheit) caused the death of a female MS patient in her early 60s  in 2018. I feel this is not discussed as often as it probably should be. At minimum I think the doctors should be advising their patients of possible issues rather than finding out on their own. There are people newly diagnosed that don’t do research because they believe their doctors will tell them what they need to know.

“Fatigue during thermal stress is common in MS and results in decreased motor function and increased symptomatology likely due to impairments in central conduction.”

How this shows up for me means no hot coffee, hot beverages increase my core body temp so even in the winter I drink iced coffee and iced tea. My house is set to 74 degrees Fahrenheit during the warmer and hot months. When the ambient temp reaches 75 all of the nerves in my body react, electricity pulses through every nerve causing a ridiculous level of pain.

Things that can help cool you down after exposure to heat or increased core temp are frozen treats, ice cubes, ice packs on your body, cooling vests, very cold drinks, and cool showers are some that work for me. I choose to spend the hotter parts of the day and season in side where I can regulate my body temp because sometimes it is days before my body recovers from over heating.

I have tried several types of cooling vests, all are meant to be worn close to your skin under your clothes. The cotton vest which the style is most like a regular vest in style is fine when you put it on but once it is no longer icy it is just very heavy and bulky. I tried another that used columns of ice packs in a lighter weight style vest, but it was still bulky under clothes. The most recent one I purchased is made of the wicking type material used in sports clothes so it is light weight and does not add a bulky layer of fabric when you are trying to cool down. It is a little longer than a sports bra and uses columns of ice in pockets; this allows you to add as much or as little columns and you need and can be replaced fairly easily. It fits ok under a sundress so while it will still be noticeable it looks more like a bra than a weird accessory and replacement columns are small enough to fit in a lunch box sized cooler if you are going to be out for the day.

Sources:

wcmea_newsletter_fall_2010

Hypothermia in MS

https://www.physiology.org/doi/full/10.1152/japplphysiol.00460.2010

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2980380/

https://www.stuff.co.nz/national/100921402/christchurch-woman-with-multiple-sclerosis-dies-of-overheating

https://www.webmd.com/multiple-sclerosis/news/20150527/ms-may-raise-odds-for-earlier-death-study-finds#1

7 Strategies for Coping With MS Heat Sensitivity

 

 

 

School Recess and Lunch Times

I am not sure if this is a nationwide problem or a local one, but I do know that it is a present problem.

My seventh grader has 30 minutes for lunch, that is his only break during the school day besides the 3 minutes he has to get between classes and his locker if needed. More than half of the time he says he does not have enough time to make it through the line for food. There are so many children in his grade they split between two lunch times and yet, when there’s testing they are combined. Combining an entire grade into a situation where it is already difficult to buy lunch is bananas. Yes, I know I could pack lunch for him every day, he likes the options at the school.

My first grader has two recesses, one just for playing and then one during his lunch break. He has plenty of time to eat but not a ton of play time to be outside. I personally do not understand how they expect children to focus and get enough time outside to be kids when they are stuck in classrooms for 6-8 hours a day with tiny little breaks.

I do understand they are trying to put as much learning as possible into the day; would people really be up in arms if they add an hour to the school day to include more breaks and outdoor time? I would think that adding the hour for extra breaks and time to run around would be good, there are many working parents who either have to figure out child care for after school or arrange their schedules around it. For the families that don’t get home until dinner time because of jobs it’s usually not a great time to play outside during the fall and winter months.

Of course there’s the argument for after school activities and allowing time for that and if a person is set on having outdoor time than you can sign them up for those. Here’s the thing though, those things usually cost money, not all families have the ability to pay for all the things that go along with those. My children are hyper-mobile so they have crazy ligaments that move too much which makes injuries more likely and more severe. They have been told not to play contact sports, no soccer, no football, rugby, so that really limits the options in our house.

Do you have an opinion on the current amount of breaks for kids at school? I would like to hear them!

Nerve Pain, MS and Parenting

They don’t tell you to prepare for the unbearable nerve pain that comes with MS. Apparently it is not one of the “more common” side effects of the disease so count yourself as lucky if you do not get this.

I take Amitriptyline for my dysesthesias, it is an “off label” use for this issue but it has been working for me, more or less. Though the last few days I have had increasing nerve pain that started in my legs only at night and progressively moved to my full body and all day. Yesterday was the worst, it got so bad I was ready to go to the emergency room, and I HATE emergency rooms. I have spent too much of my life in hospitals to go there unless it’s the last resort.

It felt like someone was stabbing every part of my body with little needles, and not just my skin (that’s what happens when my core body temp increases to much, another fun thing with MS) all of my organs too. It is hard to properly describe what it feels like to have your entire body being pricked with needles and how you can feel it in your organs, but it is not hard to explain that this pain changed my level of patience with people, my pets and my kids.

Driving home with my children, I was in so much pain my body was moving in response. My oldest told my husband later that it looked like I was trying to use the force on cars in front of us with my hands while they were still on the steering wheel. I felt my upper body contorting to try and relieve the discomfort, it did not work. The normal bickering of brothers drove me mad and when children tried to hug me goodnight I cringed and had to tell them to stop. My husband held my hand as long as I could stand it while we were watching a show and I finally had to pull away because the sweet, loving gesture of rubbing his thumb on the top of my hand was causing me pain.

I ended up taking an extra pill of Amitriptyline, I normally take 2 but the doctor said I could go up to 3 so I knew that was ok. I also took a Vicodin that I had for my migraines and back/hip pain. Then I put ice packs on my body so I could numb the sensation a bit and finally got to sleep. This morning I am in less pain so I will be increasing my dose temporarily and speaking with my doctor but I have staved off another trip to the ER for today.

It’s hard to explain to children why you are extra snappy on certain days and what the sensation you experience feels like so they can understand. It is also heartbreaking for me to have to tell my kids they can’t touch me because it causes me pain.