Postural orthostatic tachycardia syndrome (POTS) and related autonomic disorders have emerged as increasingly prevalent and complex conditions, especially in the wake of the COVID-19 pandemic. Despite decades of skepticism and limited research, there is now consensus that these syndromes are real, disabling, and deserving of clinical attention.
During the session POTS: Postural Orthostatic Tachycardia Syndrome or Is It? at ACR Convergence, two experts discussed how to differentiate conditions with overlapping features and the role of physical therapy (PT).
Recorded sessions at ACR Convergence 2025 are available on demand to all registered meeting participants through October 31, 2026, by logging in to the meeting website.
Clinical Complexity and Overlap
Patients with POTS and dysautonomia often have comorbid hypermobility syndromes, chronic fatigue syndrome, fibromyalgia, chronic pain syndromes, and mast cell activation syndrome (MCAS). These overlapping conditions can create a bewildering clinical picture, with symptoms ranging from orthostatic intolerance, palpitations, and brain fog to chronic pain, rashes, and gastrointestinal disturbances, according to Brittany Adler, MD, Investigator in the Department of Rheumatology at Johns Hopkins University.
“The lack of specific biomarkers, and the clinical overlap with rheumatologic diseases, such as lupus and Sjögren’s disease, further complicate diagnosis,” she said.
Using four case-based examples, Dr. Adler illustrated a variety of POTS presentations.
The archetypal POTS patient is a young woman, often with hypermobile Ehlers-Danlos syndrome, who develops orthostatic symptoms during adolescence. Symptoms include lightheadedness, palpitations, vision changes, crushing fatigue, and brain fog, often worsened by infections like COVID-19. Diagnosis can be made clinically with a 10-minute stand test showing a sustained heart rate increase of >30 bpm upon standing, without significant blood pressure change. Dr. Alder explained that these patients can be managed with increased fluid and salt intake, compression stockings, physical therapy, and medications such as midodrine.
In older patients, orthostatic symptoms may signal neurogenic orthostatic hypotension rather than POTS.
“In these patients, standing leads to a significant drop in blood pressure with minimal compensatory heart rate increase,” Dr. Adler said. “This pattern warrants evaluation for neurodegenerative diseases, autoimmune autonomic ganglionopathy, diabetes, amyloidosis, and medication effects. Skin biopsy showing non-length-dependent small fiber neuropathy may indicate ganglionopathy, and further workup for Sjögren’s or other autoimmune causes is essential.”
Some patients present with lifelong symptoms, family history, and burning neuropathic pain. Genetic testing may reveal sodium channel mutations, and skin biopsy confirms small fiber neuropathy.
“Although these patients may not meet strict POTS criteria, they will still benefit from empirical treatment for orthostatic intolerance,” Dr. Adler said. “Fibromyalgia should remain a diagnosis of exclusion after ruling out neuropathic causes.”
Patients with POTS can also have MCAS, presenting with episodic rashes, flushing, gastrointestinal symptoms, and orthostatic intolerance.
“A diagnosis of MCAS requires symptoms involving at least two organ systems, objective evidence of mast cell mediator release (e.g., elevated tryptase or histamine metabolites), and clinical improvement with antihistamines or mast cell stabilizers,” Dr. Adler said.
Empirical treatment is often necessary due to the difficulty of capturing laboratory abnormalities during flares.
Among the clinical pearls Dr. Adler shared, she emphasized the need to measure orthostatic vitals before attributing symptoms to POTS, long COVID, or autoimmune disease. In older patients, clinicians should search for secondary causes of orthostatic intolerance.
“As research advances, the hope is for more precise diagnostic criteria and targeted therapies to improve outcomes for these challenging patients,” she said.
Rehabilitation Approaches
Different types of therapy (PT, occupational, and speech) have varying roles in rehabilitation, according to Albert “Fin” Mears, Jr., Physical Therapist at Johns Hopkins Medicine, but there is a fair amount of overlap. PT aims to restore, maintain, and promote optimal movement and function in individuals with illnesses, injuries, or disabilities. While exercise prescription is a key component, the primary focus is on improving functional capacity and returning patients to meaningful activities, he explained.
“Occupational therapy focuses on enhancing an individual’s ability to engage in meaningful activities of daily living, which may include cognitive, physical, and mental health domains,” Mr. Mears said. “Patients with significant brain fog may benefit from speech therapy, though improvements are often seen as medical and therapy management progress.”
The central therapeutic challenge for these patients is decreased functional capacity, primarily due to impaired activity tolerance and delayed recovery from exertion, Mr. Mears explained.
“Therapy aims to improve functional capacity by enhancing activity tolerance and teaching patients to recognize and respect their recovery thresholds,” he said.
Subjective and objective assessment tools can differentiate between patients whose primary limitation is orthostatic intolerance versus those with predominant fatigue, guiding individualized treatment plans, he said.
“A detailed understanding of a patient’s daily routine, including good and bad days, is essential,” he explained.
Common subjective scales are Brief Questionnaire, Post-Exertion Malaise, and the Mayo POTS Score. Objective assessments include the 10-Minute Stand Test, Six-Minute Walk Test, Exercise Tolerance Test, and Functional Index 2.
“A common maladaptive pattern in POTS patients is overexertion on good days and inactivity on bad days, perpetuating deconditioning,” Mr. Mears said. “The initial therapeutic goal is to break this cycle by teaching patients to consistently exercise within their recovery limits, even if the activity feels minimal at first.”
Exercise serves three main purposes: recovery, modulation, and reconditioning.
“Exercise programs should specify frequency, intensity, type, time, progression, and regression,” he said.
“Patients should be educated on how to adjust their activity based on daily symptom fluctuations.”
Effective rehabilitation for POTS and related dysautonomias requires individualized, function-focused therapy. Emphasis on recovery, patient education, and gradual progression are key to improving activity tolerance and quality of life, Mr. Mears concluded.
Don’t Miss a Session
If you weren’t able to make it to a live session during ACR Convergence 2025 — or you want to revisit a session from the annual meeting — make plans to watch the replay. All registered participants receive on-demand access to scientific sessions after the meeting through October 31, 2026.