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.

Pushing the Limit When You Have Multiple Sclerosis

Posted on June 23, 2014 by Samantha Schech

Physical exercise for individuals with multiple sclerosis (MS) has been a hot topic over the last few years. While exercise is always encouraged to promote a healthy lifestyle and to increase physical function, many are still unaware of the types of exercise that can benefit those with MS.

At the Consortium of Multiple Sclerosis Centers (CMSC) conference last month, I attended a number of wonderful programs regarding exercise and MS, affirming the importance of an exercise routine. Many discussions were had regarding the level of physical activity and ways to work and improve the body’s ability.

In a recent article published by the Rocky Mountain MS Center, Dr. Timothy Vollmer discusses the importance of pushing oneself to the point of fatigue once a week during exercise. Similar to how a person might train for a marathon or endurance sport, Dr. Vollmer explains that when exercising using a normal routine, in order to see improvement one needs to push the limit of exertion once a week. By pushing the body’s limit, the body adapts and grows, making the activity less strenuous over time.

In many meetings at CMSC, researchers also discussed the idea of working the body to physical exertion. This is a major change in the minds of those in the MS community. Although the importance of exercise is stressed, research has not yet described the level of exercise that may be effective. I look forward to seeing how the paradigm shifts from “taking it easy” to “pushing beyond your limit” and what the research has to offer the MS community.

It is always recommended to start and continually monitor your fitness routine with a professional such as a physical therapist (PT). The PT can help determine your body’s capabilities and knows what your body’s limits are. A safe and effective fitness routine may help to improve physical function and promote a better quality of life.

Reducing Internal Stressors and the “and, AND, AND” Mentality

Posted on April 2, 2014 by MSAA

Stress is something that everyone confronts in their lives. Stress broadly falls into two categories – external stressors where another person or entity is pushing you harder and asking for more, more, more (more of your time, more of energy both physical and mental, and more than you can handle). I think everyone is familiar with the external stressors- a school deadline, a boss that keeps piling more on your plate, appointments and activities you need to get to…these can all add external stress.

The other lesser acknowledged form of stress stems from internal pressures. Internal stress arises when you place restrictions, parameters, and deadlines on yourself, where you strive harder and work longer and try to be “perfect” or to be everything you think you can and should be for everyone and more.

I’ll give you an example. The schedule says you work from 8-5 and get an hour for lunch, that is the schedule you are paid for BUT the phone is ringing, and a new project is assigned, and the work is piling up (external stressors) so your internal response is to come in a little early and only take 20 minutes for your lunch breaks and maybe on some days you stay a little later too. Before you know it you are working 5-10 additional hours each week. Sure you are getting the work done but you aren’t being compensated extra, and everyone else is taking their lunch breaks.

Sometimes people use internal stressors because they are motivated by something specific (i.e. if my boss sees me accomplishing so much maybe I can earn the promotion, and some day make it to the corner office) or maybe you love your job and are motivated by what you think you can accomplish (i.e. I’m saving the world one day and one life at a time, GO ME!) but whatever the reason at some point those additional self-imposed stressors will catch up to you. And frankly at the end of the day while your boss might acknowledge all of your hard work it is just as likely that they will raise their expectations of you, so that without a big promotion you are stuck doing all the extra work and if you try to cut back on the “extras” your boss may wonder why you can’t accomplish what you used to!

These internal stressors don’t just apply to the workplace, they may cause anxiety over what you need to do-“I’ve got to clean the house before Janice comes over to visit, but when will I have the time and energy.” If Janice is truly a friend she will understand that life got in the way and that your house can’t always be impeccable. Don’t worry, Janice already knows that you are human.

You may be asking why is it important to acknowledge when a stressor is internal or self-imposed and try to reduce those actions or thought patterns. Stress is well known to impact health. Stress has been attributed to developing or exacerbating changes in mood such as increasing worry/anxiety, but stress has also been linked to physical health including affects to sleep, cognition, and increasing levels of burnout/fatigue. On the more severe end of the spectrum, stress has been linked to heart attacks, ulcers, and has also been correlated with MS Relapses among other health issues. So, while you may not be able to stop your boss from dumping 500 projects on your desk or keep your house in a perpetually spotless state, you can put in place an internal protection system: Remind yourself that there will always be work for tomorrow no matter how much work you do today, and that friends, family, and neighbors don’t expect you to be “perfect.” Finally, let yourself know that it is okay to ask for help when you need it. Don’t be your own worst enemy, prioritize your health and try your best to stop or reduce that internal voice saying and, AND, AND.

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