Demystifying difficult, often neglected symptoms of rheumatic diseases
WASHINGTON, D.C.—Patients with rheumatic diseases live with an array of symptoms that affect their daily functioning. Although joint pain is the most recognized symptom, other symptoms, such as fatigue, brain fog, anxiety and depression, may have an equal—and sometimes greater—impact on a patient’s quality of life.
A panel of experts comprising patient advocates with experiential knowledge of these symptoms, as well as clinicians and researchers with extensive knowledge of treating patients with rheumatic diseases, met on Nov. 16, during ACR Convergence 2024. In the session titled It’s Not Just Joint Pain: Demystifying Difficult, Often Neglected Symptoms of Rheumatic Diseases, these experts offered their perspectives on the impact of and solutions to these symptoms, which affect the physical, cognitive and emotional health of patients with rheumatic diseases.
Fatigue
Fatigue was among the symptoms given the most attention. Eileen Davidson, a patient with rheumatoid arthritis (RA), a patient advocate from Vancouver and member of the Arthritis Research Canada Patient Advisory Board moderated the session. She called fatigue the most debilitating symptom of living with a rheumatic disease and likened it to the feeling of walking around with the flu 24/7.
Ayman Askary, MD, a consultant rheumatologist at the Robert Jones and Agnes Hunt Orthopedic Hospital, Oswestry, U.K., who has long experience working with patients with rheumatic diseases, called fatigue a terrible illness that interferes with a person’s ability to work and take care of oneself, which in turn affects independence and dignity.
Despite its prevalence and significant impact, the cause of fatigue in rheumatic diseases is not fully understood but is undoubtedly multifactorial. Dr. Askary describes the fatigue he sees in most of his patients as idiopathic, or fatigue of an unknown cause. To reach that diagnosis, he takes a practical approach to rule out potential causes. First, he looks at whether the rheumatic disease is active, then he looks at comorbid conditions and he also considers medications, such as statins, aromatase inhibitors and methotrexate. These treatments can be associated with fatigue. He noted that, as a clinician, it’s always important to determine if fatigue is related to starting a new medication because patients on a new medication that is working to reduce swelling and improve pain may not know that a downside may be fatigue.
Daniel Whibley, PhD, assistant professor, physical medicine and rehabilitation at the University of Michigan, Ann Arbor, emphasized that persistent fatigue still occurs even when active disease is managed and inflammation is reduced. Other factors to consider include high levels of depression, cardiovascular risk factors (e.g., high blood pressure or history of stroke) and low levels of physical activity, which are associated with presenting with high levels of fatigue. Although sleep problems are closely related to fatigue, he emphasized that the two are not the same thing. Fatigue doesn’t resolve after sleep.
Susan Bartlett, PhD, clinical psychologist, behavioral epidemiologist and professor of medicine at McGill University, Montreal, Canada, and joint professor of medicine at Johns Hopkins Medicine, Baltimore, and associate editor of The Rheumatologist, said fatigue could be related to living with a rheumatic disease and the exhaustion that comes from dealing with the medical system, insurance and medications.
She also cited as a factor the uncertainty of living with a disease in which one day you may feel fine and then—out of the blue—comes a flare and having then to deal with that. She noted that RA often occurs in the prime of life for most women and deadens joy.
“Patients say time after time, I can deal with the pain. It’s the fatigue that really does me in,” Dr. Bartlett said. “The psychological piece that comes with fatigue is just enormous.”
Effective Treatments
The panel discussed a range of treatments for fatigue, including such psychological approaches as cognitive behavioral therapy, diet and nutrition, supplements and physical activity.
Cheryl Crow, an occupational therapist who has lived with RA for over 20 years and founder of Arthritis Life, emphasized that fatigue does not occur in a vacuum. She likened managing symptoms of rheumatic diseases to playing whack-a-mole—one symptom will come up, and you manage it; another symptom comes up, and you manage it; and on and on.
Such a characterization illustrates the interrelatedness of the symptoms of rheumatic diseases, including fatigue and other symptoms, such as cognitive dysfunction (e.g., brain fog) and psychological issues (e.g., depression and/or anxiety). The good news: When fatigue gets a little better, other symptoms get better, said Ms. Crow. However, when the fatigue gets worse, other symptoms get worse.
Ms. Crow encourages patients to be “a detective of their own body, 24/7” to learn and understand their own body and patterns as a way to manage the uncertainty of a disease and not get too overwhelmed. Also, she pointed to the first comprehensive nonpharmacologic evidence-based guideline by EULAR on fatigue in musculoskeletal conditions.1
Of the nonpharmacologic recommendations, exercise and comprehensive psychosocial management are the top two. Ms. Crow advocates breaking down exercise recommendations into four pillars (i.e., strength training, cardiovascular, stretching and balance) and referring patients to a physical or occupational therapist for guidance. A caution: If you just tell patients to exercise, it is too overwhelming. Ms. Crow also provided anecdotal personal experience with strength training, saying that she was shocked at the improvements in fatigue and cognition she experienced after just two days.
Meet Nutritional Needs
Cristina Montoya, a registered dietitian and owner and founder of Arthritis Dietitian, urges patients to break away from diet cultures, or self-imposed restrictive diets, that may be inadvertently contributing to fatigue, such as a low or no carbohydrate diet. She noted that complex carbohydrates, such as whole grains, are full of B vitamins that are essential for energy. She also discussed ways to conserve energy around meal preparation to ensure nutritional needs are met, such as using precut ingredients for cooking, getting family involved, the use of slow cookers or using meal prep services, if feasible. She will also collaborate with clinicians to investigate and correct any nutritional deficiencies, such as folate, vitamin B-12 or vitamin D.
For her many patients who are overweight, she recommends checking for metabolic biomarkers, such as hemoglobin and lipid profiles, to see if hyperglycemia could be exacerbating fatigue.
Supplements: Dr. Askary also spoke about the role of supplements, such as magnesium, which he prescribes to help with sleep and muscle function, but also vitamins B-12 and D. He mentioned the use of modafinil, typically prescribed by a neurologist or psychiatrist for narcolepsy, or possibly attention-deficit/hyperactivity disorder. However, he doesn’t have much experience with it. He laughingly said he recommends strong espresso or Turkish coffee. But he does not recommend steroids, which he said are contraindicated.
Mary Beth Nierengarten is a freelance medical journalist based in Minneapolis.
Reference
- Dures E, Farisogullari B, Santos EJF, et al. 2023 EULAR recommendations for the management of fatigue in people with inflammatory rheumatic and musculoskeletal diseases. Ann Rheum Dis. 2024 Sep 30;83(10):1260–1267.