Check out Fight Back Against Fatigue: A Psoriatic Arthritis Patient’s Guide for more information on this topic.
Wiped out. Utterly exhausted. Like you’re coming down with the flu. Unable to get your head above water. Pumping gas, but the gas tank is empty.
The fatigue that people with psoriatic arthritis (PsA) have is real and it interferes tremendously with daily life.
In fact, nearly 50 percent of patients with psoriatic arthritis report high levels of fatigue (five or higher on a 10-point scale) — and consider fatigue a high-ranking problem, after joint pain and before skin issues, according to a 2016 study published in the journal Joint Bone Spine.
If you live with fatigue from psoriatic arthritis, we don’t have to tell you what it feels like. However, hearing from other people with PsA who are also wrestling with this nagging, persistent feeling of exhaustion can help you feel less alone.
Talking about what fatigue feels like can also help you explain to loved ones why you aren’t able to do certain activities or why you turn down invitations or leave things early. Perhaps, most importantly, it can help you figure out if you need to talk to your health care provider to get better control of your fatigue.
What Is Fatigue?
Fatigue is not just being tired or sleepy. It is a medical symptom that impacts your physical and mental state and your ability to think clearly, stay motivated, and do the things you need or want to do.
Unlike being tired, fatigue doesn’t get better with rest or caffeine. “When it comes to being tired, naps or a few hours of rest can solve your problem; on a good day, maybe even a cup of coffee,” says CreakyJoints member Diane T., who began experiencing symptoms of psoriatic arthritis at age 25. “Fatigue takes it to another level. It’s a constant state of being tired in which the simplest tasks can cause me to lie in bed for 90 percent of the day.”
Read more here about the difference between having fatigue and feeling tired.
Another distinguishing characteristic of fatigue: You don’t always know what’s causing it.
When you’re tired, you often know why. Many people feel tired after a stressful day, a late night, or moving homes, but “fatigue feels like it’s moving day, every day,” says CreakyJoints member Ashley K., who was diagnosed with psoriatic arthritis seven years ago.
There’s usually not a single cause of fatigue in psoriatic arthritis. Instead, it’s considered to be due to many causes, or multifactorial. You may experience fatigue because of inflammation or high disease activity that stresses the body. Chronic pain and itchy skin are also a factor, since these symptoms can interfere with sleep. Certain medications you take to treat PsA may affect fatigue too.
A variety of co-occurring medical conditions, called comorbidities, can also contribute to fatigue, including:
- Low thyroid disease
Read more here about different causes of PsA fatigue.
What Psoriatic Arthritis Fatigue Feels Like: What Researchers and Rheumatologists Say
There are many different ways patients with PsA talk about their fatigue, says rheumatologist Alexis Ogdie, MD, Director of the Penn Psoriatic Arthritis Clinic in Philadelphia and Associate Professor of Medicine at the Hospital of the University of Pennsylvania.
“Some people describe fatigue like their battery running out; some people talk about exhaustion before the end of day — like by 3 p.m. you can’t go on without a nap or drinking excessive amounts coffee, which doesn’t work; and some people talk about not being able to mount energy [for everyday activities],” she says.
To come up with a framework of how people with psoriatic arthritis think about fatigue, Dr. Ogdie along with several researchers recruited 19 patients with PsA and asked them to describe the experience of fatigue in their own words. The findings were published in 2020 in the journal RMD Open: Rheumatic & Musculoskeletal Diseases. Patients’ responses included:
- Energy/lack of energy
- Mental fatigue
- Brain fog
- Life/energy steam out
- Bone crashing fatigue
- Like a hangover
- Wiped out
- Worn out
“Fatigue can be very subjective,” says rheumatologist Eric Ruderman, MD, Professor of Medicine at Northwestern University in Evanston, Illinois. “I might not totally understand what fatigue feels like for you, but I can understand how it impacts you, or what you need to do differently to manage it on a daily basis.”
Some of Dr. Ruderman’s patients with psoriatic arthritis say they feel “wiped out all of the time,” while others feel the burden as the day progresses. Because of limited energy levels, “they have to pick which one or two things they can do in a given day,” he says.
Not being able to do the things you want to do and/or not having the same level of enjoyment while you’re doing things because of fatigue can wear on you, says Dr. Ruderman. For many patients, the emotional toll from fatigue triggers feelings of irritability, loneliness, guilt, and embarrassment.
What Psoriatic Arthritis Fatigue Feels Like: What Patients Say
We asked several of our CreakyJoints Psoriatic Arthritis Patient Council members to help us paint a picture of what PsA fatigue feels like. Read on and see which descriptions resonate with you.
- “Overwhelming; the littlest tasks take the most effort.” — Ashley K.
- “A really heavy feeling that I can’t shake. I’m awake, I can’t focus, and I can’t fall asleep.” — Jaime H.
- “Like getting a blood draw, but instead of taking blood, the energy slowly gets pulled from my body.” — Diane T.
Fatigue makes me:
- “Just sit in my chair for two hours. I can’t summon the will to get up and move.” — Eddie A.
- “Not have control of my day and my body. You wake up and you don’t know if you’re going to be functional, or do what you had planned for, and that in itself is a journey that I’m still working through.” — Ashley
- “Feel guilty, like ‘I should have been there for this or that,’ ‘I should have left earlier,’ or ‘I should have done more.’” — Eddie A.
- “Feel like I have the flu. I’m utterly tired and have to lie down or sleep.” — Frances D.
If fatigue were an animal, it would be:
- “A turtle. I would just go back into my shell and just be.” — Eddie A.
- “A panther. You don’t see it right away, but it’s definitely there and ready to attack. And once you know it’s there, you can’t ignore it.” — Ashley K.
- “A sloth. They sleep a lot and move slowly.” — Frances D.
- “If my fatigue were an animal, it would be a starfish because they are beautiful animals that move slowly but always sparkle.” —Diane T.
- “If my fatigue were an animal, it would be a cat because I can nap all day but then I am up at night rattling things.” — Jaime H.
To live without fatigue would mean:
- “A complete life change. I don’t even remember how to function without fatigue because it’s permeated so much of who I am.” — Ashley K.
- “Waking up wide-eyed, bright-eyed, and bushy-tailed, and hitting the ground running —and it’s like 5 a.m. I have not really lived a life without fatigue; I know people who are like that, and I’ve never been like that.” — Jaime H.
- “I could finally make it through a day. With chronic fatigue, I might not even start my day. Just being able to complete a day without feeling exhausted would be amazing. No medications to take. I can go where I want when I want. I can stop canceling plans. I could go into an office and be around my coworkers and do things after work.” — Diane T.
Read about some daily routine tweaks that can help with PsA fatigue.
This article is part of Fight Back Against Fatigue: A Psoriatic Arthritis Patient’s Guide and was made possible with support from Janssen Pharmaceuticals, Inc.
Gudu T, et al. Fatigue in psoriatic arthritis – a cross-sectional study of 246 patients from 13 countries. Joint Bone Spine. July 2016. doi: https://doi.org/10.1016/j.jbspin.2015.07.017.
Haugeberg G, et al. Psoriatic Arthritis: Exploring the Occurrence of Sleep Disturbances, Fatigue, and Depression and their Correlates. Arthritis Research & Therapy. August 2020. doi: https://doi.org/10.1186/s13075-020-02294-w.
Interview with Alexis Ogdie, MD, Director of the Penn Psoriatic Arthritis Clinic in Philadelphia and Associate Professor of Medicine at the Hospital of the University of Pennsylvania
Interview with Eric Ruderman, MD, Professor of Medicine at Northwestern University in Illinois
Krajewska-Włodarczyk K, et al. Fatigue – an underestimated symptom in psoriatic arthritis. Reumatologia.March 2017. doi: https://doi.org/10.5114/reum.2017.68911.
Ogdie A, et al. Patient’s experience of psoriatic arthritis: a conceptual model based on qualitative interviews. RMD Open: Rheumatic & Musculoskeletal Diseases. doi: http://dx.doi.org/10.1136/rmdopen-2020-001321.
Orbai A, et al. International patient and physician consensus on a psoriatic arthritis core outcome set for clinical trials. Annals of the Rheumatic Diseases. April 2017. doi: http://dx.doi.org/10.1136/annrheumdis-2016-210242.
Pilgaard T, et al. Severity of Fatigue in People with Rheumatoid Arthritis, Psoriatic Arthritis and Spondyloarthritis – Results of a Cross-Sectional Study. Navarini L, ed. PLoS ONE. June 2019. doi: https://doi.org/10.1371/journal.pone.0218831.