Chronic Fatigue Image

Let’s get this out of the way: Chronic fatigue is a lot more than just being tired. It’s a serious symptom of many different illnesses.

Everyone gets tired from time to time. Even the healthiest of healthy people feel tired. This might be why someone who hasn’t experienced chronic fatigue might not understand the differences between tiredness, laziness, and fatigue. If you’ve never experienced the wall tht fatigue creates inside you — blocking your ability function normally — you might not understand what life with fatigue is like.

I asked Susan Bartlett, PhD, a professor of medicine at McGill University in Canada, to discuss fatigue with me. Simply put, “fatigue is a perception of how much energy we have,” says Dr. Bartlett, who has done research on fatigue. “There’s plenty of evidence from work by our group and others that the fatigue associated with inflammatory arthritis is different from the tiredness people without chronic diseases experience when they don’t get enough sleep or do a lot of physically demanding work.”

Fatigue vs. Being Tired

Humans require sleep to function, so we try our best to get the recommended six to eight hours of sleep a night (or during the day, because not everyone is on a 9-to-5 work schedule). Whatever your routine is, we have to sleep. Our batteries need recharging.

Generally, we get tired before our usual bedtime or after a long day of work or play. Some days are worse than others, but that feeling of tiredness we experience before bed or first thing when we wake up goes away after a little while each morning.

However, if you are feeling overly tired and nothing seems to help, you might be living with an underlying health condition. Google “diseases that cause fatigue” and you’ll see a host of them: autoimmune diseases, fibromyalgia, diabetes, thyroid problems, mental health conditions, and many more.

The culprits in my chronic fatigue are rheumatoid arthritis, anxiety, depression, fibromyalgia, and nutritional deficiencies such as iron, vitamin D, and copper.

It’s safe to say I am constantly tired even though I have a love affair with coffee.

Why Fatigue Is So Debilitating

While living with chronic pain is incredibly debilitating all by itself, fatigue can have an even bigger impact on my daily life. It has taken me years to understand, treat, and navigate.

Living with fatigue is incredibly frustrating and stressful because it impacts so much of what I am capable of each day. Fatigue is a major reason I do not hold down a “normal” job and went on disability at age 29.

I’ve learned to adapt to being in constant pain, but fatigue is much harder to push through. Your body feels like it’s powering off like a dying battery. No matter how many lists I make to juggle daily life as a single mother with chronic illness, life is often moving a lot faster than my fatigue can keep up with.

What’s more, fatigue has this insidious way of creeping into and changing my personality and mood. Living with chronic fatigue often makes me feel:

  • Irritable
  • Lonely
  • Flaky (I can’t always predict when fatigue will make me cancel at the last minute or take longer than I need to complete a task)
  • Forgetful
  • Full of guilt
  • Lazy or slow
  • Embarrassed

What Fatigue Really Feels Like

Think about these scenarios:

  • You had the flu and it knocked you out for a short period. You were too sick to get much done, and definitely too sick to work or play with your children.
  • You had too much fun and a few too many drinks one night, then couldn’t get off the couch the entire next day. You felt so weak and tired that you had to call in sick with some made-up illness.

Chronic fatigue resembles these situations, but it’s worse because it doesn’t get better with medicine, rest, caffeine, a greasy breakfast, or time.

Indeed, Dr. Barlett told me that I’m not alone in these descriptions.

“People with RA will often describe their fatigue as a feeling of being completely ‘wiped out’ or ‘utterly exhausted’ or ‘how I feel when I’m coming down with the flu,’” she says. “This type of fatigue does not seem to improve with sleep or rest, and very often is a sign that disease activity is increasing. Indeed, in work we did across many countries, almost everyone we spoke with mentioned extreme fatigue as the first and most reliable signs that they are about to have a serious disease flare.”

Our fatigue is always there, nagging away.

Fatigue Is Not Being Lazy

You wouldn’t call someone recovering from a heart attack or undergoing cancer treatment lazy. Yet chronic fatigue — which is due to underlying medical reasons — has this way of making those it impacts appear lazy.

Fatigue robs us of our ability to think clearly and of our motivation. We are not being lazy when we can’t get out of bed, go to work, run errands, or play with our children. We are physically and mentally unable to.

You would never call someone dealing with a debilitating illness “lazy” if you knew what they were going through on an everyday basis. Some of our most severe symptoms are invisible, which is part of the problem.

Fatigue Never Goes Away

Like others with chronic fatigue, I have better and worse days. But “chronic” means that fatigue doesn’t go away with time or treatment. I’ve probably spent thousands of dollars over the last decade over-caffeinating myself and trying various exercise regimens, diets, vitamins and supplements, and other products claiming to crush fatigue with shiny marketing messages and bogus health claims.

Eating healthy and regular exercise help to some degree but they’re not a cure-all. I’m still perpetually tired.

When I do have short moments of clarity, I know fatigue is always waiting in the wings. If I try to do something that I used to take for granted — something as ordinary as laundry or emptying the dishwasher — fatigue can rush in and leave me bedridden or stuck on the couch for the rest of the day or even up to a week.

My Fatigue Triggers

Fatigue is always present in my life, but over time I’ve learned that different situations can bring it out more. These can include:

  • Medications
  • Comorbidities
  • Poor diet or loss of appetite
  • Lack of exercise or too much exercise
  • Cannabis (while it may help with pain and symptoms, it can also cause tiredness and be demotivating)
  • Weather (I’m convinced days that are too hot or cold, rainy days make me exhausted)
  • Stress
  • Menstrual cycle
  • Infections
  • Environmental factors, such as pollution

Dr. Bartlett shared that even certain days of the week tend to bring more fatigue.

“It seems that Thursdays and Fridays are potent triggers for fatigue,” she says. “By the end of the week — unless you have been balancing activity with rest — most people are feeling more tired. There will be days when you push through to get things done, but often pay the price for several days after with increased feelings of fatigue. In particular, many women will push through a list of things they think they need to do for others, only to find that it leaves them utterly drained.”

Yeah, that sounds familiar.

What Helps My Fatigue

Even though nothing can completely alleviate my fatigue, there are some things that make it more manageable. If I don’t treat it, it gets worse. To combat fatigue, my go-to habits include:

  • Getting regular exercise and movement (I have exercises for good days and the not-so-good days, a little bit of moving usually helps me)
  • Eating healthy and stay hydrated
  • Keeping a sleep routine
  • Resting (but not getting too much rest)
  • Getting Fresh air
  • Minimizing stress and keeping things simple
  • Tracking my health and keeping a symptom journal
  • Writing down things that are important
  • Reminding others to remind me about things that are important
  • Reading things three times over to understand or save for later
  • Being kind to myself: I am fighting to climb an invisible mountain
  • Taking certain vitamins and supplements like B complex, vitamin D, iron, and green tea (these help but they are by no means a cure. Be sure to speak to your doctor about what may be right for you as many of them can have contraindications with medication or health conditions.)

Dr. Barlett emphasized to me the importance of maintaining a sleep schedule. “I’ve spoken with many people who have experienced more fatigue during the pandemic, in part because they have felt more stressed, but also because their sleep schedules have become more erratic,” she says. “One of the best things we can do to ensure we stick to a regular sleep schedule by going to bed at the same time each night and get enough sleep. Too much screen time in the evening, heavy meals eaten late at night, and even strenuous exercise shortly before bed can also make it more difficult to fall asleep.”

When I asked her about what else helps fatigue, she emphasized regular exercise. “One of the best and most important antidotes for fatigue is regular exercise. Bodies were made to move, and skeletal muscle is the largest organ in the body. Plus, exercise is the best treatment for stress, worry, and low mood,” she says. “When people tell me they are tired, the first place we begin is with ensuring they are active every day. That means not only getting enough moderate-to-vigorous activity each day, but also being active throughout the day.”

She suggests trying not to sit in one place without moving for more than one hour during the day, even if it simply means getting up to get a glass of water or using a bathroom on another floor in your home if you can.

You can get creative with chores, she says. “Don’t pile all the laundry into one overflowing basket. Use it as an opportunity to make two trips and get a few more steps.”

Talking to the Doctor About Fatigue

Some fatigue may be inevitable with many chronic illnesses, but that doesn’t mean you shouldn’t talk to your doctor about it. I asked Dr. Bartlett when someone should bring up their struggles to their doctor.

 “Any time you feel that your fatigue is interfering with your life — you have stopped doing things that you love like painting or gardening because you don’t have the energy — is an important signal. If you find yourself unwilling to make plans because you’re not sure you’ll have enough energy on the weekend, that is an important sign,” she says.

First, she recommends doing a thorough self-care inventory to make sure you’re doing everything you can do to manage fatigue on your own.

  • Make sure you are getting enough physical activity and maybe increase your activity if it is on the low end.
  • Be sure you are getting to bed at a reasonable hour every night, no exceptions.
  • Examine what you’re eating and try to eat a lighter meal earlier in the evening.
  • Limit how much news you’re watching or how much time you spend in front of screens generally.
  • Make sure you are taking all of your medications as prescribed.
  • Assess your pain levels: Have you been in more pain recently? Are there things you can do to reduce your pain (paying attention to how you sit and how long you stay sitting; warm baths; ensuring enough “me” time)?
  • Consider your work schedule: Have you been working longer hours, or letting work spill over so it’s taking up too much of your evenings and weekends?

“Be highly protective of your time, and your energy,” says Dr. Barlett. “Ask yourself if the floors really need to be washed, by you, today?”

If none of these things are helping after a week, and especially if you think your arthritis or another condition is more active and may be contributing to your fatigue, it’s time to speak with your doctor, she says.

Track Your Symptoms with ArthritisPower

Join CreakyJoints’ patient-centered research registry and track symptoms like fatigue and pain. Learn more and sign up here.

Interview with Susan Bartlett, PhD, a professor of medicine at McGill University in Canada

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