Safety Precautions Can Be Extra Challenging for Those with MS

Posted on July 31, 2020 by MultipleSclerosis.net

Living through the COVID-19 pandemic is difficult for everyone. However, it is certainly more challenging and stressful for anyone with a health complication, especially MS. In particular, quarantine and some safety precautions come with unique challenges for those with MS.

To hear more about how the MS community is handling COVID-19 protective measures, we asked our Facebook community: “What safety precautions have you found to be the most challenging with MS?”

More than 100 community members weighed in. Here is what you had to say. Continue reading →

Invisible but VERY Real: Heat Intolerance

Posted on July 10, 2020 by MSAA

By Alene Brennan

It’s been four years since I was diagnosed with Relapsing-Remitting MS.

I remember the doctor asking me if I had a sensitivity to heat in that appointment.

YES!

Finally, I got validation for Continue reading →

Hot, Hot, Hot

Posted on July 13, 2016 by Angel Blair

Being halfway through July we can surely say the summer season is in full swing, and for those with MS it’s no secret that the heat and humidity of the season can be a real downer at times. MS heat sensitivity can result in aggravated or worsened MS symptoms and help to contribute to an overall disliking of the summer months. This can be disheartening because many individuals enjoy this time of year, with outdoor activities and events that beckon and get-togethers that warrant much time outside—shame on MS for trying to corrupt this. But there are things that can be done to try and overcome the cruel intentions MS may have during this time of year, and some may already find themselves doing them.

It might be tricky at times, but when you can, get outdoors when the temperature is more manageable. Going outside earlier or later in the day/night can help you avoid the hotter temps throughout the day.
When possible, engage in activities that are in cooler/air conditioned places. If you have to be outside, try to take breaks in shaded areas or indoors when you can.
Wear cooling products like neck wraps or vests that can help to reduce heat sensitivity issues and keep your body temperature down.
If you’re not in the mood to travel or go out due to the heat, have friends or family come to you for a visit.
Explain MS and heat sensitivity issues to those close to you so they have an understanding of what you’re experiencing and why there may be some limitations during this time of year.
Try to stay actively engaged in the activities and events you enjoy during these summer months. Adjusting the timing or setting of your interests or finding new things to participate in can help to combat the heat factors.

There’s a line you can draw with MS when it comes to your likes and interests. If you enjoy the summer season take part in things you’re able to or try new experiences, and let MS sizzle by itself under the summer sun.

Uhthoff’s Phenomenon: Keeping Heat Related Symptoms at Bay

Posted on April 20, 2016 by Samantha Schech

“Uhthoff’s what?” you may be asking yourself. Yes it is a funny name, but it has a more serious meaning. This common symptom of MS can be very troubling, especially when it happens abruptly. Uhthoff’s syndrome or phenomenon is described by clients as a dimming or reduction in vision, usually associated with exercise or overheating.

A 2011 study finds that approximately 60% of MS patients report heat sensitivity. Heat sensitivity is defined as a temporary worsening of MS symptoms when the weather becomes hot or humid. These symptoms are also common when running a fever, or participating in exercise activities.

While Uhthoff’s phenomenon relates solely to vision issues, in the Swedish study heat sensitivity was also discovered as a significant factor relating not only to fatigue but also to several other common MS symptoms such as pain, concentration difficulties, and urination urgency.

Heat sensitivity can cause a number of challenges to individuals with MS. One of the more challenging issues involves determining if the change in symptom is caused by MS disease activity, or other causes such as heat. This experience can be worrisome and cause individuals to fear that their MS is somehow getting worse, or possibly progressing.

So what can you do to combat the heat? Be mindful of how heat can impact your MS symptoms. Planning is the key to keeping heat related symptoms at rest; plan activities around cooler times of the day, either early in the morning or later in the evening.

What tips and tools have you developed to keep heat related symptoms at bay?

References:

http://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-11-27

Beat the Heat this Summer

Posted on March 30, 2015 by Samantha Schech

Spring has sprung, or so they say; and while the first day of spring brought some cold weather and snow to some parts of the country, others are starting to think about the warm weather months. It is known that individuals with multiple sclerosis (MS) can be affected by the heat. The slightest increase in body temperature can intensify MS symptoms.

For those with this type of heat sensitivity, the spring and summer months can be a challenge. While family and friends start planning outdoor events and activities, individuals with heat sensitivity question what they will do all summer long.

Cooling products are designed to be used during these warmer months. Ice pack style cooling products allow an individual to place specially designed ice packs into a garment that is worn on the body. Through cooling technology, the body is provided with a safe cooling temperature that helps to reduce overheating.

MSAA offers a program for those who are income eligible to provide these ice pack style cooling products and accessories. For more information regarding this program, please visit the MSAA website at https://mymsaa.org/msaa-help/cooling/.

For those who may not be eligible for assistance through the MSAA program, the manufactures of these cooling items provide products and accessories that can be purchased. Visit Polar Products and Steele Body Cooling, and remember to let them know that MSAA referred you. There may be a discount offer available!

Keeping Your Cool During the Warmer Months to Help Manage MS Heat-Related Symptoms

Posted on June 25, 2014 by MultipleSclerosis.net

The summer months are upon us, which means warmer temperatures and the potential for a worsening in MS symptoms. Fatigue is one of the more common symptoms of MS, and it can impact a person’s mood, sleep, and overall quality of life.¹ As many of us know, there is a well-established link between MS-related fatigue and heat sensitivity,² so the warmer summer months can be especially challenging for a person with MS.

Last summer, one of the MultipleSclerosis.net contributors, Ashley Ringstaff, wrote about some of her trips and tricks for dealing with the summer heat. Since Ashley lives in central Texas, she is no stranger to brutally hot summers. She also has 2 very energetic children who love being outside, so staying in an air-conditioned house all day isn’t an option, even if she wanted it to be. Ashley’s recommends using cooling products (not just cooling vests), including those that are available through MSAA’s Cooling Program and Polar Products. She also uses an outdoor garden hose mister and outdoor fans when she is sitting on her porch, and she even likes the inexpensive handheld fans when she is following her boys around. She noted that staying hydrated, is of course, also extremely important.

Caregivers also understand the importance of helping a person with MS stay cool to minimize heat-related symptoms. Last summer, Patrick Leer shared his story about making lifestyle adjustments to help his wife during the warm summer months. He made sure to keep a cooler packed with water bottles and a neck cooler that he received at an MS walk. Patrick also mentioned unique considerations for planning a family vacation at the beach – he would book a room with a view of the beach so his wife could stay inside with air-conditioning and enjoy watching their daughter play outside in the sand. They even managed to find a beach hotel with an ice rink, which seemed to be made for families just like theirs!

Because heat can exacerbate MS-related fatigue, we recently asked our Facebook community if they experience more fatigue in warmer months, and how they manage MS-related fatigue. Here are some of the highlights from our community members’ responses:

Managing MS-Related Fatigue in the Warmer Months

Keeping cool using different devices

Soak small towels in water for your neck, face and top of your head and reload it at water fountains or hoses.
Use a cooling vest.
Carry ice packs in your pockets with a travel sized spray bottle full of cold water.
Carry a small damp towel in the spring and summer to help cool your head and face.
Use Frog Togg cooling cloths.
Wet bands that you put around your neck really help; also drink plenty of water, use air conditioners and fans.
Take cool showers.
Some individuals may benefit by wearing long sleeves and a hat when outside. Sweating is nature’s way of keeping you cool, so long sleeves can absorb perspiration and keep you cooler. Limiting time outside to 15- or 20-minute periods with rest in between can also help.

Consuming cold food/beverages

Eating crushed ice throughout the day can help.
Keeping a cold drink with you helps tremendously so you can cool yourself from the inside out. Iced beverages and popsicles help.

Other tools to combat heat-related fatigue

Exercise helps but it is sometimes difficult to shake the symptoms to get up the energy to go exercise.
Acupuncture and reflexology can help.
Try to get as much done in the morning to mid afternoon.
If prescribed by your doctor, taking a medication such as Provigil® (modafinil) that promotes wakefulness can help.

MultipleSclerosis.net moderator, Christie Germans, mentioned that she relies heavily on air conditioning as well, and she’s able to get a discount on her electricity bill due to her MS diagnosis. She recommends exploring your gas/electricity provider’s website for discounts available for medical needs. Multiple sclerosis will likely be listed in the “qualifying medical needs” list. Or, contact your neurologist’s office. You may be able to save as much as 30% on your bill! For her full response, click here.

Do you experience more symptoms in the warmer months? How do you manage MS-related fatigue?

References

1. Induruwa I, Constantinescu CS, Gran B. Fatigue in multiple sclerosis – a brief review. J Neurol Sci. 2012;323:9-15.

2. Marino FE. Heat reactions in multiple sclerosis: An overlooked paradigm in the study of comparative fatigue. Int. J Hyperthermia. 2009;25:34-40.

FOLLOW MSAA ON: