Check out Fight Back Against Fatigue: A Psoriatic Arthritis Patient’s Guide for more information on this topic.
If you live with psoriatic arthritis (PsA), you know that it affects not just your skin and joints but, quite often, your energy and motivation — due to all-consuming fatigue. But even though fatigue is one of the most problematic PsA symptoms for patients, there can be a big disconnect between how patients and their health care providers go about identifying it, discussing it, and treating it.
For example, research presented at the 2020 annual meeting of the American College of Rheumatology showed that while health care providers reported fatigue in about 30 percent of their patients, some 80 percent of patients said that they experienced fatigue.
Although the health care community is becoming more sensitive to this very real and very debilitating symptom of psoriatic arthritis (and many other inflammatory conditions), it still may be up to you to initiate the conversation with your provider.
“Rheumatologists tell me all of the time that they are uncomfortable bringing up fatigue with patients because they don’t have easy answers for them,” says Susan Bartlett, PhD, a Professor of Medicine at McGill University in Canada. “And patients feel uncomfortable talking about it because they feel like it is somehow a personal feeling.”
With relatively limited time during an office visit, “many physicians don’t ask about fatigue,” says rheumatologist Lihi Eder, MD, PhD, a scientist at Women’s College Research Institute in Toronto, and Assistant Professor in the Department of Medicine at the University of Toronto. Instead, they’re focused on other PsA symptoms, such as painful joints, back pain, enthesitis, skin plaques and rashes, nail changes, or swollen “sausage” fingers and toes.
Yet better communication with your doctor is key to getting your PsA fatigue under better control. We asked top rheumatologists what they want to know about your fatigue — and we asked psoriatic arthritis patients what has worked best for them when communicating about PsA fatigue with their doctor.
Why Fatigue Is Not Talked About (And Why It Needs to Be)
Unfortunately, fatigue is not discussed enough during doctor appointments, and there are many possible reasons for this, such as:
- Doctors may not ask about fatigue because they assume you’ll bring it up if it’s a problem
- Patients may have difficulty describing fatigue because the symptoms can be elusive
- Patients may not bring up fatigue because they don’t think they’ll be taken seriously, have been brushed off before, or assume it’s just something they have to live with
- Other medical issues may be prioritized over fatigue
“The bottom line is that fatigue is hard,” 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. “Let’s say we have 15 to 20 minutes with a patient. We may only have two minutes left to talk about fatigue,” after discussing their joints, medications, and other issues.
“It’s a huge topic, and I think that a lot of physicians don’t do it because it sucks up so much time,” Dr. Ogdie continues. “This doesn’t make it right, but this is where the empowered patient can come in and say they want it addressed.”
To this end, Dr. Ogdie says rheumatologists need more self-management strategies that they can teach patients to try to manage their fatigue. “Then, during the visit, they can say ‘I tried X, Y, and Z and it didn’t work, can you give me pointers of what to try next?’”
Check out these 20+ daily routine changes to fight fatigue and improve energy.
Both Dr. Eder and Dr. Ogdie, as well other health care professionals CreakyJoints spoke with, agree that fatigue is a critical symptom for the doctor to know about.
“Fatigue itself can affect a patient’s quality of life and ability to function,” says Rebecca Haberman, MD, Clinical Instructor of Rheumatology at NYU Langone Health in New York City. “If you don’t tell us, we won’t know, and it could change the treatments that we suggest and prescribe for you.”
What’s more, fatigue can be a sign of ongoing inflammation and chronic pain, a side effect of one of the medications you take to treat PsA, or an indication of another co-occurring health conditions including:
- Cardiovascular disease
- Low thyroid disease
- Sleep issues
“It is imperative that physicians get information and insight from patients during the visit to be able to tease out the cause of the fatigue, which oftentimes can have several different causes,” says Elizabeth Schulman, MD, a rheumatologist at Hospital for Special Surgery in New York City. “For example, a patient may be undergoing a personal psychological stressor that could cause anxiety/poor sleep/fatigue, or a different provider could have started the patient on a new medication that has fatigue as a side effect.”
To help figure out the underlying cause of your fatigue, your doctor may recommend various tests in addition to the usual tests you get as part of your psoriatic arthritis disease management, says Dr. Haberman. These might include:
- A complete blood count to test for anemia
- A TSH test to check the thyroid stimulating hormone (TSH) level for thyroid disease
- Vitamin and nutrition blood tests to check for deficiencies
- A referral for a sleep study to check for obstructive sleep apnea or restless leg syndrome
Read more about the multifactorial causes of PsA fatigue.
How to Assess Fatigue in Psoriatic Arthritis
Unfortunately, fatigue can’t be meaured with a simple lab test. And there is no single agreed-upon patient survey, questionnaire, or checklist to measure fatigue. “There are many scales and patient reported outcomes (PROs) that can be used. It doesn’t matter which is used as long as the topic is addressed by your doctor,” says Dr. Haberman.
Your doctor may use one of (or none of) the following questionnaires, which are not developed specifically for PsA, to measure your fatigue:
- Fatigue numeric rating scale (NRS)
- Fatigue severity scale (FSS)
- Functional Assessment of Chronic Illness Therapy‐Fatigue (FACIT fatigue) Scale
- Multidimensional Health Assessment Questionnaire (MHAQ)
- Medical Outcomes Study Short Form-36
- European Quality of Life Index-5 Dimensions
“At our center, we administer a questionnaire called the MDHAQ, which includes questions about fatigue, and we may administer the fatigue severity scale if needed,” says Dr. Haberman. Patients may be asked to rate their level of fatigue on a numeric scale (0 to 10) and compare their level of fatigue to prior to having PsA, or when they are stable in their treatments (i.e., not flaring).
Dr. Schulman doesn’t routinely give her patients any surveys/PRO instruments to measure fatigue, but says she always asks about it. However, she admits: “I probably should be more consistent with this. The key is asking patient’s about fatigue at every visit and monitoring it over time.”
Describing Your Fatigue to Your Provider
Fatigue is subjective and can feel very different from patient to patient. “Many patients have different definitions of what fatigue means to them, so it is important to first allow them to elaborate on their fatigue symptoms,” says Dr. Schulman.
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. Take a look at their recorded responses and pick which words may help you better describe fatigue to your physician:
- Energy/lack of energy
- Mental fatigue
- Brain fog
- Life/energy steam out
- Bone crashing fatigue
- Like a hangover
- Wiped out
- Worn out
Read more about how CreakyJoint members describe their fatigue.
Even if your doctor doesn’t understand how fatigue feels for you, they can understand how it impacts your daily living, so make sure to convey what fatigue prevents you from doing, or “what you need to differently to manage it on a daily basis,” says rheumatologist Eric Ruderman, MD, Professor of Medicine at Northwestern University in Evanston, Illinois.
CreakyJoints member Ashley K., who was diagnosed with PsA seven years ago, keeps a sleep and activity log to track her fatigue so she can show her doctor. “It is important to have quantitative data to present to them to argue your case,” she says.
Eddie A., who was diagnosed with PsA in 2003, agrees that “doctors prefer specifics.” He says: “You just have to be forceful, bring examples, and tell how fatigue is affecting your life.”
You can use our ArthritisPower app to track your symptoms (like fatigue) and disease activity and share your results with your doctor.
How to Discuss Fatigue at Your Next Visit
Our experts recommend coming to your next visit with a good description of your fatigue and sleep patterns and prepared to answer the following questions.
- Can you rate your fatigue on a number scale (0 to 10, with 10 being the worst fatigue you’ve ever experienced)?
- Have you recently become more fatigued?
- What, if anything, helps relieve your fatigue?
- When does fatigue occur: Is it mainly in the morning, does it hit in the middle of the day?
- How long has your fatigue lasted: Is it more than a week?
- Do you wake up tired even after you get more than seven to eight hours of sleep?
- Is it difficult to muster energy for activities you enjoy?
- Does fatigue prevent you from going to work or performing daily activities, like showering?
- How does fatigue impair your quality of life?
- Do you require a nap in the middle of the day?
- How are your sleep, exercise, and stress management habits?
- Have you changed or started any new medications?
- How are you feeling mentally and emotionally?
- Is there anything going on in your personal life that could be causing fatigue?
In turn, Dr. Schulman recommends asking your physician the following questions:
- Do you think my fatigue is a result of inflammation or other issues related to my psoriatic arthritis?
- Could there be other underlying health issues causing my fatigue?
- Are there any medications/treatments that will help my fatigue?
- What diet or lifestyle modifications could I implement to minimize fatigue?
And most importantly, says Ashley K., “Keep advocating for yourself. If one doctor won’t listen, get a second opinion. You know yourself better than anyone.”
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.
Haddad A, et al. Comorbidities in Patients with Psoriatic Arthritis. Rambam Maimonides Medical Journal. January 2017. doi: https://doi.org/10.5041/RMMJ.10279.
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 Elizabeth Schulman, MD, a rheumatologist at Hospital for Special Surgery in New York City
Interview with Eric Ruderman, MD, Professor of Medicine at Northwestern University in Illinois
Interview with Lihi Eder, MD, PhD, a scientist at Women’s College Research Institute in Toronto, and Assistant Professor in the Department of Medicine at the University of Toronto
Interview with Rebecca Haberman, MD, Clinical Instructor of Rheumatology at NYU Langone Health in New York City
Interview with Susan Bartlett, PhD, a Professor of Medicine at McGill University in Canada
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.
Skougaard M, et al. Relationship Between Fatigue and Inflammation, Disease Duration, and Chronic Pain in Psoriatic Arthritis: An Observational DANBIO Registry Study. The Journal of Rheumatology. April 2020. doi: https://doi.org/10.3899/jrheum.181412.
Walsh J, et al. Fatigue in Psoriatic Arthritis (PsA): Prevalence in Patients from the US and Europe, and Impact on Quality of Life and Work Productivity [abstract]. Arthritis & Rheumatology. November 2020. https://acrabstracts.org/abstract/fatigue-in-psoriatic-arthritis-psa-prevalence-in-patients-from-the-us-and-europe-and-impact-on-quality-of-life-and-work-productivity.