How People with Chronic Illness Cope with Fatigue
Ever since Lori D. was diagnosed with psoriatic arthritis, there have been days she’s so knocked out, she can’t even get out of her car on her own. “Sounds ridiculous every time I say it,” she admits, “but it’s true. It feels like that moment on the Tilt-a-Whirl right before the big spin—I have that kind of weightless, nauseous feeling. Combined with that feeling you get after you’ve had one too many drinks. Combined with Benadryl-level sleepiness.”
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According to a recent study, around 50 percent of people with psoriasis and 50 percent of people with psoriatic arthritis report experience fatigue—30 percent of people with psoriatic arthritis say their fatigue is severe. Fatigue related to these conditions may be caused by a number of factors, though doctors are not able to pinpoint exactly why it strikes. Proteins called inflammatory cytokines, which promote inflammation, could be to blame. Or it could be the exhaustion caused by living with chronic pain and flare-ups; or, the fatigue could be a side effect of taking certain medications. For example, biologic drugs (produced from or containing components of living organisms) such as Enbrel or Remicade may weaken your immune system, which in turn may make your body have to work much harder to keep you healthy.
“It’s not a ‘regular’ tired, it’s almost flu-like,” explains Katie Willard Virant, M.S.W., L.C.S.W., a psychotherapist in St. Louis and author of Psychology Today’s monthly blog Chronically Me: The Emotional Landscape of Chronic Illness. “It’s hard to explain to people.”
Ask around and the descriptions are plentiful and vivid: It’s like swimming underwater; your arms and legs feel like cement; it feels like you've been awake and tortured with sleep deprivation for a week. As Linda H. aptly describes it: “I feel like an overcooked noodle.”
The “fatigue monster” can strike at any time, any place. Rebecca E. even fell asleep watching her nephews play baseball in a park. “I couldn't keep my eyes open. When the game finished, I went straight to the car because I was exhausted and hurting. I'm sure my husband's family thought I was being a rude witch. I came home and fell asleep for three hours, and still felt like I could sleep for 12 more.”
Fatigue is extremely difficult to deal with, not only for the person struggling to complete normal daily activities, but also for their friends, family, and co-workers. “It’s disruptive to identity,” says Willard Virant. “It’s disruptive to relationships and employment.”
Here’s how some people living with psoriasis and/or psoriatic arthritis power through fatigue:
1. Give Yourself Permission, Time, and Space to Sleep
Shannan L. calls her fatigue “a constant battle,” adding that “there are some weekends I only get up long enough to eat and drink and go back to sleep.” Likewise, LaDonna M.’s fatigue is so severe, “I have no control,” she says. She runs the site MomBlogSociety.com but has to stop working frequently and just go to sleep. “It's horrible,” she says.
Sound familiar? Willard Virant says to stop shaming and beating yourself up for something that is necessary for people with fatigue. “Make the downtime feel less like a punishment and more like a positive experience.” She recommends making your nap space comfortable, cozy, and happy, whether that means playing relaxing music, lighting candles, or splurging on a supersoft blanket.
If your fatigue is so severe that you can barely keep your eyes open on the job, ask your boss if there are days you can work from home. If that doesn’t work, you may legally be able to take rest breaks with a doctor’s note. Check out the “reasonable accommodations” laws in your state, as required by the Americans with Disabilities Act. For more information, go to AskJAN.org.
In the meantime, “sleep hygiene is really important,” Willard Virant adds. That means getting eight uninterrupted hours per night. To start, limit caffeine, especially late in the day, try to go to bed at the same time every night, and turn off your phone in the night hours.
2. Make Healthy Lifestyle Choices
A year ago, Peter D.’s fatigue was so bad that he could barely bend down to tie his shoe. “There were days I just wanted to curl up in a ball and cry,” he admits. He took matters into his own hands and, along with starting to take medicine, changed his lifestyle. He kept a food diary to see what triggered flare-ups then tweaked his diet. He cut out alcohol, caffeine, and processed foods, and added turmeric, Vitamin D, and fish oil. Today, he says there are days you wouldn’t even know he has an autoimmune disease. “A year into my journey, I can say I am proud of how I have adapted and of the steps I took.”
“Nutrition is important to energy levels and overall feelings of vitality and health,” says Gary Feldman, M.D., medical director of Los Angeles’ Pacific Arthritis Care Center and Osteoporosis Diagnostic Medical Center. “I would suggest overweight patients go on a low-carb, high-protein diet, which tends to increase energy and help in weight loss.”
Vanessa C. also overhauled her lifestyle. Now, she eats a good breakfast and tries not to drink too much coffee to avoid crashing hard. “I try to drink a lot of water and eat small healthy snacks that will energize me throughout the day,” she says. “I'm usually in bed by 8 p.m., and I use magnesium lotion for my pain to help me sleep.”
Doctors recommend staying hydrated to prevent energy levels from dipping. “I read somewhere that we get dehydrated and don’t realize it,” says Elizabeth W. “I’ve found drinking a lot of water does help me.”
3. Add Any Kind of Exercise
With your body throbbing, exercise may be the last thing you want to do, says Karen H., a former dancer who ended up in a wheelchair before the age of 30 from her psoriatic arthritis. But “you must move that body,” she insists. It’s true that several studies show that exercise may increases blood circulation and flexibility and also may decrease stiffness and pain, because having stronger muscle mass protects the joints—even though people experiencing pain and fatigue may worry it’ll make them feel worse.
“Even 10 minutes here and there will get you moving. Stretch, walk the block, do anything in short jaunts to get yourself going,” says Karen. “‘Move it or lose it’ is the absolute truth.” Karen believes a lack of exercise puts her in a “great funk. I view movement as a sense of reclaiming myself and not surrendering.”
It’s true that psoriatic arthritis can limit people’s ability to run a marathon, or even to do yoga, because it puts so much pressure on your joints. But keep seeking out some form of exercise that works for you, such as swimming, biking, weight and/or resistance training, tai chi and walking. “Proper, regular aerobic and weight-training exercise probably is most effective at increasing a sense of well‑being and reducing fatigue,” Dr. Feldman explains.
“It’s gotta be something manageable and something that feels like it's hitting the sweet spot,” adds Willard Virant. Listen to your body. Exercising at a moderate intensity can help you reap the benefits—but don’t overdo it to the point of causing pain or exhaustion.
Amanda G. admits that sometimes sleep is just what she needs, “but I also know if it doesn’t let up after a day that I have to exercise. It helps a lot.”
4. Learn to Say No
Stop overextending yourself. Rebecca M. has cut out a lot of the stress in her life and made it simpler. “It was hard to give up some of my volunteer work, but stress is a killer for sure!” she says.
That also means not being embarrassed to tell friends that you can’t make plans or that you have to cancel plans last-minute because you’re tired. “I'm always a proponent of honesty,” Willard Virant says. “Try to talk to your friends about what it's like. Say, ‘I'm exhausted, I'm fatigued, this is hard for me. I really wish I could do more.’”
Having a chronic disease like psoriasis or psoriatic arthritis can be lonely and isolating, and you may lose some friends who just don’t “get it,” but don’t force yourself to do things if you’re not feeling up to it. “Define your values,” Willard Virant suggests. “Figure out who and what are important, and who and what are not important to you.”
5. Create a Personalized Plan for Getting Tasks Done
Everybody has different ways of how they get errands and chores done. You may be the kind of person who needs to sprinkle activities throughout the day with lots of small breaks (a pacer); or, you may be the kind of person who wants to complete all of your chores and activities with one fell swoop then take a bigger, longer break (a clusterer). “Listen to your body and see what rhythm works best for you,” says self-proclaimed pacer Willard Virant. It may take some trial and error to figure out if you like to pace or cluster, but identifying and sticking with the method that works best for you will likely yield better results.
Another way to help combat fatigue around activities and chores is to figure out how to spread limited energy throughout all the categories in your life. Willard Virant suggests writing a list of all your activities and to-dos then prioritizing them. “I think people with chronic illness just work themselves to the bone and they're like, ‘Okay, well I'm tired and I only have this certain amount of energy and I have to work, so I'll just work. And that's not a very fulfilling life.”
By creating a simple list of everything you need to do, you can better schedule and more easily make adjustments so you can avoid getting overloaded. “If you chart out your daily activities, such as showering, shopping for food, cooking, self-care and social activities, it’ll help you organize your limited reserves and your life will feel more balanced,” says Willard Virant.
6. Have Your Vitamin D, Iron & Thyroid Levels Checked
Sometimes, fatigue is just a part of having psoriasis or psoriatic arthritis and there’s not much to do about it. For example, for days after a Remicade infusion, many patients report being exhausted. Some even ask for the day after off from work in advance, knowing how wiped out they will be. But there are also occasions when there’s a fixable medical reason for the fatigue. For example, Monica V. has her Vitamin D levels checked regularly. “If they are low, you will be exhausted all of the time. I just had mine rechecked and they are low again, so I’ll start taking Vitamin D again.”
The bottom line is that sometimes fatigue is unavoidable. But if this wipeout feeling continues to affect your daily life in a negative way, there may be other things you can do about it. A simple blood test could show thyroid issues, vitamin deficiencies and more. So, if nothing you’ve tried has worked, be sure to talk to your doctor about your symptoms. By working closely with your doctor and trying some of the tips mentioned here, you may finally find the relief you are seeking.