Many individuals with ME/CFS report symptoms of dysautonomia, but what is dysautonomia? Let’s break down the word “Dys” means abnormal in Greek and “autonomia” refers to the regulation of the autonomic nervous system, which controls automatic body functions like blood pressure, heart rate, and digestion. Hence dysautonomia refers to conditions that affect the autonomic nervous system, and there are many conditions that fall under this umbrella such as postural orthostatic tachycardia syndrome (PoTS), orthostatic intolerance, vasovagal syncope and multiple system atrophy. Many individuals with ME/CFS report symptoms of dysautonomia and PoTS is a frequent diagnosis amongst the community. Dysautonomia can majorly impact quality of life, interfering with everyday activities.
Signs/symptoms
As the autonomic nervous system is involved in many functions spanning multiple body systems, it is no surprise that dysautonomia manifests in many signs and symptoms, including:
- Brain/general: fatigue; brain fog; lightheadedness/dizziness; migraines; anxiety
- Eye: vision problems; eye pain; dry eyes; watery eyes
- Heart: palpitations; chest pain
- Blood vessels and skin: temperature dysregulation; irregular blood pressure; excessive or lack of sweating
- Lungs: breathlessness
- Gut: nausea; abdominal pain; bloating; constipation
- Bladder: frequent urination, inability to fully empty bladder
Causes
Dysautonomia can be classified into two main types – Primary: it occurs on its own without another cause (such as in the case of inherited disease); Secondary: occurring when another condition affects or damages the autonomic nervous system such may be the case in ME/CFS. Other secondary causes of dysautonomia, that people within the ME/CFS community may be familiar with or themselves report as coexisting conditions include: Mast cell activation syndrome (MCAS), Ehlers-Danlos syndromes (EDS), small fibre neuropathy (SFN), fibromyalgia, and gut disorders such as gastroparesis.
Diagnosis
The diagnostic journey for dysautonomia is often long and frustrating, likely due to the overlap of symptoms with other conditions and lack of clinician knowledge. Some individuals see several medical professionals before receiving a diagnosis.
As there are different forms of dysautonomia, there are varying methods of diagnosis. Typically a detailed medical history and physical examination (including blood pressure and heart rate) prior to more advanced testing.
Testing can include:
- Tilt table testing
- Heart tests e.g. ECG
- Autonomic testing including deep breathing test and valsalva maneuver
- Sweat tests
Management
Whilst the complete elimination of symptoms is not guaranteed, management strategies tailored to the type of dysautonomia can often help reduce symptom severity and improve quality of life.
