Some Things I Wish People Knew About MS-Related Fatigue

 

Devin Garlit

 

Of the many symptoms that plague those of us with multiple sclerosis, one of the most common is fatigue. It’s such a common symptom that the National Multiple Sclerosis Society estimates that fatigue affects at least 75% of those with MS.

Sadly, fatigue is a symptom that can be hard to comprehend if you haven’t actually experienced it. While the topic of fatigue has been covered a lot, I wanted to write something that could be shared with those who don’t have MS, those who may not understand fatigue. Basically, some things that I wish everyone knew about fatigue. So here we go!

MS fatigue is not just being tired

MS-related fatigue is NOT the same as being tired. You are tired when you’ve expended a lot of energy or had a long day. Our fatigue is not caused by losing out on some sleep or overworking ourselves (though doing either of those can certainly make it worse); it is present no matter what.

Fatigue makes simple tasks feel impossible

For me, when fatigue sets in, it feels like my entire body is weighed down. Like I’m submerged in an invisible layer of quicksand that makes every move extremely arduous. The simplest of tasks becomes incredibly difficult. I could be lying on the couch and just trying to reach for the remote control can seem like a near-impossible task. That’s something that I don’t think people understand. It’s not just that I’m too exhausted to go do something, I’m too exhausted to do anything. Simple tasks like taking a drink of water or going to the bathroom become astonishingly difficult for me.

Expending all our energy

A common meme on the internet proclaims that people with multiple sclerosis expend 5 times as much energy as a normal person. While I haven’t seen a reference to any science behind that, it’s still a great way of explaining what fatigue feels like to us. It takes so much for us to do something that others might take for granted. If you have or know someone with MS, then you’ve no doubt heard about the Spoon Theory, another great description of what it’s like to live with MS that speaks specifically about fatigue.

No amount of sleep or rest helps

No amount of sleep or rest will help my fatigue. Maybe all I can do is sleep or rest, but that doesn’t mean that more of that will fix the problem. Remember, MS-related fatigue isn’t caused by something I’ve done, it’s caused by damage to my nerves and brain.

Fatigue is something I encounter at some point every day of my life. Sometimes that means I will wake up fatigued, making it hard to get out of bed and start my day. Many times it will hit me in the afternoon. It can last all day or for a few hours.

Fatigue is unpredictable

It can come on suddenly, which means I may have to cancel plans on short notice. Physically, in addition to feeling weighed down, my body becomes weak and tingly. That weakness leads to falls and also dropping things. While fatigue can happen to me almost randomly, some things are guaranteed to bring it on, like a change in temperature or stress. Fatigue is not just a physical issue, it makes my cognitive problems worse too. The fogginess, the confusion, the memory lapses that I experience because of MS all increase if I am dealing with fatigue.

An invisible symptom

Fatigue is one of those invisible symptoms we deal with, which means many of us have to deal with people, including friends and family, believing that it’s not a real issue. This leads to other problems like depression and loneliness. When we do mention it, we unfortunately often have to hear others say something along the lines of, “Oh, yeah, I’m tired, too, I understand”. I’m sorry, but you don’t. You have a choice in being tired; we don’t. There is perhaps no more infuriating of a situation than this one: when you discuss your fatigue and someone else says they are tired. Again, it’s not the same thing. I’ve been tired before I had MS and trust me, it’s different. The exhaustion I felt after running a marathon could not even compare to what MS-related fatigue feels like.

Difficulty making it through a workday

MS-related fatigue is a big reason why many people suffering from it end up leaving their job or why their performance begins to suffer. According to the National MS Society, fatigue is a big culprit when it comes to people with MS having to leave work.¹

It's absolutely demoralizing

An example of an all-too-common fatigue scenario for me is waking up with some big plans (for me, let’s say that means trying to clean the kitchen, maybe even just emptying and loading the dishwasher) and then being completely unable to do it. To have zero energy to be able to do anything and have to just lay there. It’s absolutely demoralizing to me and it happens at the very least once a week, often more. Having fatigue feels like having your life stolen from you, but you are still awake to see it go by without being able to partake in it. MS-related fatigue makes me a prisoner in my own body.

 

How to Prevent MS Flare-Ups

 

To try to prevent a flare-up from happening:

Take meds as directed. The drugs your doctor prescribes help slow your MS from getting worse and help prevent relapses. If you have side effects, don't just stop taking them. One study found about 25% of MS patients who stopped taking their meds had a relapse. Certain meds for Crohn’s disease or rheumatoid arthritis may cause MS-like symptoms. So can drug interactions. Check with your doctor to see if there are meds you’re taking that could be interacting with one another, and if your current meds are right for you. 

Stay healthy. A bout of cold or flu can set off your MS symptoms. A bladder infection can trigger either a flare or a pseudo-flare, so the same advice applies. In fact, infections cause a third of MS flare-ups. Wash your hands with warm water and soap during the day, get your yearly flu shot, and avoid people who look sick. Stay hydrated. Try to avoid anyone who is sick. Make sure your food is cooked properly. Practice safe sex.Ask your doctor for other ways to avoid bladder infections, including vaccinations. Try to avoid anyone who is sick. Make sure your food is cooked properly. Practice safe sex.

Relax. In some people with MS, stress can bring on flare-ups. Find calmness with meditation, yoga, counseling, or anything else that's good for you and helps you unwind. In one study, MS patients reported their stress level was cut nearly in half after 6 weeks of yoga.

Rest. You won't feel well when you're worn out. Sleep problems are common in people with MS. Symptoms like pain and muscle spasms can keep you up at night. Some of the meds that treat MS interrupt sleep, too. Work with your doctor to get your symptoms under control so you can sleep. Adjust your meds if they keep you awake. Aim for 7 to 8 hours of sleep per night.

Stay cool. High temps may trigger a flare-up. If you’re affected negatively by warm surroundings, you should skip saunas, hot tubs, and hot showers and baths. Most of the time hot weather causes fatigue. Also, do what you can to avoid being outdoors on hot days. Take cool baths and/or run air conditioning. Try a hat or clothes that hold ice packs or frozen gel packs to stay comfortable. If you have an exercise goal, divide the time you exercise into smaller segments, with rest after each one.

Eat well. Eat foods rich in omega-3 fatty acids. They’re believed to fight inflammation. Also, get plenty of fiber and stay away from foods with saturated and trans fats. A healthy diet helps keep your immune system strong.

Steer clear of smoking. This is a major risk factor for flare-ups, and it can make your symptoms worse. If you smoke, your doctor can help you make a plan to stop.

From: WebMD

New Research Shows Link Between Sleep and Thinking Problems in People with MS

 A recent study showed that sleep problems and thinking (cognitive) problems occurred significantly more frequently in nurses with MS than in nurses who didn’t have MS, and these issues were linked. This means that sleep problems, which are common in MS, may be a factor in the development of cognitive problems. Sleep disorders are treatable (see below). Whether improving sleep can improve cognitive function as well has yet to be determined.

• Background: Sleep difficulties are more common in people with MS than in the general population. In addition, many people with MS develop problems with cognitive function, including information processing and memory. A team from the University of Michigan investigated whether sleep problems contribute to cognitive problems in people with MS.
• This Study: Investigators looked at questionnaires completed by 63,866 nurses (524 of with MS) enrolled in the Nurses’ Health Study. This ongoing study uses questionnaires to track chronic conditions and risk factors for chronic conditions in women nurses. Participants had been asked about diagnosed/suspected sleep disorders and daytime sleepiness. They also had been asked whether they had difficulties with memory, or with cognitive tasks such as following instructions or navigating familiar streets.
• Results: Sleep disorders, sleepiness, and cognitive problems were significantly more common in nurses with MS than in those without MS. Using advanced statistical methods, the group showed that the occurrence of sleep disorders and sleepiness were significantly associated with the development of cognitive impairment.
• The Meaning: Sleep problems and cognitive problems affect many people with MS. This study shows a possible connection, meaning that sleep disorders or excessive sleepiness may be leading to cognitive problems. Further study can help to determine if this is the case. This is important because sleep disorders are treatable. Research in people who do not have MS is starting to show that treatment for some sleep disorders may improve cognition, so there is hope that this may also be true for people living with MS.

Learn more…
Are you sleep deprived? Learn more
Get 6 strategies to improve your sleep
Watch a webinar - Ask an MS Expert: Sleep and MS
 
“Pathways between multiple sclerosis, sleep disorders, and cognitive function: Longitudinal
findings from The Nurses’ Health Study,” by Tiffany J Braley , Monica M Shieu, Afsara B. Zaheed and Galit Levi Dunietz, is published in the MS Journal (published online January 12, 2023),
 

7 Lifestyle Changes to Help Slow MS Progression Inbox

MS is a lifelong disease. Your symptoms may gradually get worse as it progresses and parts of the brain and spinal cord get damaged. But a few simple lifestyle changes can help you stay mobile and have a good quality of life for a long time.

Stick With Your Treatment

There are more than a dozen medicines that doctors recommend to prevent relapses and slow MS. These treatments can help you feel better, but only if you take them.

Treatment Timeline

The goal with MS treatment is to prevent more trouble, says Randall Trudell, MD, an expert on this neurological disease. He says there are many effective medications from pills to infusions to help prevent relapses.

It can be hard to think about taking medications for many years to come. But the sooner you get on the right medicine routine and the longer you stick with it, the better you'll control your disease.

Some people stop taking their medicine because they don't think that it helps them or they have side effects. Talk to your doctor if that happens. They may be able to adjust your dose, switch you to a new drug, or help you manage any side effects you do have.

If you've stopped treatment because you can't afford your medicine, check with the MS Society or the company that makes the drug. They may be able to help you cover the cost.

It's also important to manage any other health problems you have. Heart disease, diabetes, lung disease, and depression can all make your MS progress more quickly. See your primary care doctor or a specialist to get diagnosed and treated.

Exercise

Years ago, doctors warned people with MS to avoid exercise because they thought it could make the disease worse. Today they know that the opposite is true.

Exercise strengthens the muscles that help you walk. It also eases fatigue, boosts mood, and improves quality of life in people with MS. There's even some evidence that strength training might help slow MS damage in the brain.

An exercise program for MS includes 150 minutes of "aerobics" each week. These are activities that get your heart pumping, like walking or swimming. Work out at your own pace and level. Also stretch for at least 10 minutes each day to release tight muscles.

Use weights or resistance bands twice a week to strengthen your muscles. A physical therapist can show you how to do each exercise correctly to prevent injury.

Eat a Healthy Diet

A balanced diet is important for your health in general, but especially when you have a long-term disease like MS. Research shows that people with MS who eat a lot of fruits, vegetables, and whole grains have less disability and fewer symptoms like depression and fatigue than those who eat less of these healthy foods.

Limit processed foods and animal fats like red meat and butter. Get your fats from healthier sources such as fish, nuts, avocados, and olive oil.

Vitamin D

People who have higher levels of vitamin D in their blood are at lower risk of getting MS. Research is underway to see if there's a link between vitamin D levels and curbing your relapses. 

You can get your daily vitamin D from foods like fatty fish and fortified milk. Your body also makes its own stores of this vitamin when your skin is in sunlight. A blood test can show whether you're low in vitamin D. If so, a supplement will help boost your levels to where they need to be.

Get Restful Sleep

A lack of sleep may not make your MS progress, but it can certainly make you feel worse. It's hard to fall asleep and stay asleep all night when you're in pain, you feel depressed, or you have to get up to use the bathroom many times. Steroids and other medicines you take to control MS can also keep you awake.

Ask your doctor whether any of your MS medicines could be affecting your sleep. Treat pain and other symptoms that are getting in the way of a restful night's sleep. Try to relax and let go of stress before bed with a warm bath, calming music, or a good book.

Don't Smoke

Yet another reason not to smoke is that it can make your MS get worse, more quickly. Smoking also raises your chances of getting heart and lung diseases, which speed up MS progression.

It's not easy to quit, especially if you've smoked for many years. But when you do kick the habit, you'll start to see health benefits right away. Make a plan to quit, get support from your doctor and friends, and have medicines and other tools on hand to lessen the urge to smoke when it hits.

Get Vaccinated

Infections like the flu can make your MS relapse and your symptoms flare up. Get your flu vaccine each fall to avoid getting sick. If you take a disease-modifying drug for MS, don't get the FluMist nasal spray because it's a live vaccine. Since your immune system -- the body's defense against germs -- is weaker from MS, the flu shot, which contains a dead form of the virus, is safer for you.

Ask your doctor whether you're up to date on all the other vaccines you need to stay healthy.

From: WebMD