Dysautonomia: its name is a little confusing. It sounds like someone is having trouble (dys) with naming (nomia) their car (auto). Of course, that’s not it: Dysautonomia is an umbrella term for a variety of things that can go wrong with the autonomic nervous system (ANS).

Dysautonomia turns out to be a common factor in long COVID, which is the focus of the feature article in this issue of Massage & Bodywork (“Unpacking the Long Haul,” page 35). It is a complicated and frustrating situation that can be a freestanding disorder or part of a bigger pathological picture. It has some specific ramifications for clinical decisions with massage therapy. And because long COVID is common, the chances are excellent that clients with this kind of ANS dysregulation will be asking us for help.

In a previous issue of Massage & Bodywork magazine, I published a Pathology Perspectives column (“The Lowdown on Lightheadedness,” January/February 2020, page 36) on postural orthopedic tachycardia syndrome (POTS), which is a common type of dysautonomia. To do that, I compiled some background information on autonomic nervous system function and dysfunction that will be useful in this context as well. Following is a small excerpt from that article.

Autonomic Nervous System Review

Because dysautonomia involves problems with autonomic function, it will be useful to review a few things about the autonomic nervous system. Readers will remember that the ANS helps us maintain physiological homeostasis: a stable internal state, even amid changing external environments. It does this through neurons, but ANS processes are also carried out and prolonged by some hormone secretions.

Structurally, the ANS operates under the control of the hypothalamus and uses motor neurons to do its work. Some of these neurons emerge from the brain and pass into the body, packaged within cranial nerves. And some of them emerge from the spinal cord, encased in the bundles that make up spinal nerves.

Functionally, the ANS provides motor signals to muscles and glands that allow us to respond to our environment, and this happens below levels of conscious thought or voluntary action. Autonomic neurons help regulate heart rate, respiratory rate, blood pressure, peristalsis and digestive secretions, and a myriad of other processes that keep us alive. These motor signals are discussed as sympathetic (“fight or flight”) and parasympathetic (“rest and digest”) responses. 

What is Dysautonomia?

Dysautonomia occurs when a problem in ANS neurons affects the ways we respond to the environment. This can manifest as suppressed or exaggerated reactions in sympathetic or parasympathetic responses, such as a racing heartbeat, a slowdown in digestive motility, an inability to sweat, sweating too much, or a number of other symptoms. In this way, the term dysautonomia doesn’t apply to any specific problem or pathology. Instead, it describes results of various disruptions in normal autonomic function.

Who Gets Dysautonomia?

Dysautonomia is surprisingly common. Before COVID-19, some form of chronic dysautonomia affected between 1 and 3 million people in this country. Those numbers are likely to climb, as many of those with long COVID are likely to develop dysautonomia symptoms.

Dysautonomia Pathophysiology: What Happens?

As mentioned at the outset, the autonomic nervous system is the network of nerves that helps us maintain a stable internal environment, especially in setting our blood pressure, heart rate, temperature, respiratory rate, digestive function, and many other processes. Dysautonomia develops when agents of the ANS in the central or peripheral nervous systems are impaired, and this leads to many types of symptoms and damage in the rest of the body.

The changes that lead to autonomic dysfunction may vary in each individual. When dysautonomia is a freestanding disorder, its pathophysiology may be unclear. However, when it is a result of some other condition, it is easier to follow the trail back to its causes.

Dysautonomia is a common complication of some degenerative neurologic diseases—these are progressive conditions that affect the central nervous system, and ultimately the ANS. Parkinson’s disease, Alzheimer’s disease, and Lewy body disease may all have this complication.

Autoimmune diseases are often associated with dysautonomia, including Sjogren’s syndrome, lupus, ankylosing spondylitis, multiple sclerosis, and several others, although the connections between autoimmune dysfunction and dysautonomia isn’t clear.

Some genetic conditions also tend to have this feature. People with Ehlers-Danlos syndrome and Huntington’s disease often have bouts of dysautonomia. And an inherited subtype called familial dysautonomia involves a number of other signs and symptoms, including reduced pain sensation, poor temperature regulation, and dry eyes.

Any conditions that cause nerve damage, like diabetes or AIDS, can interrupt autonomic function. Autonomic dysreflexia, a complication of damage related to trauma or tumors in the spinal cord, is a severe and life-threatening form of dysautonomia.

Problems with autonomic function may be an adverse effect of certain medications, especially alpha and beta blockers.

Dysautonomia also has several common “partners in crime”—conditions that it often accompanies as a comorbidity, although the links between the conditions aren’t clear. This is the case with mast cell activation disorders, many autoimmune diseases, and some other situations.

Dysautonomia and Long COVID

Dysautonomia is probably a factor in the lives of many people with long COVID. Scientists who study long COVID have developed several theories about this connection. The proposed explanations are complex and not terribly relevant to massage therapy clinical decisions, but it is interesting to track the thinking process.

Some experts suggest the virus in the CNS induces dysregulation of heart rate variability, and that, along with suppressed respiratory drive, can lead to hypoxia, fatigue, and chest pain: all common features of long COVID.

Another possibility is that the infection may create a new autoimmune response, which is responsible for the sympathetic activation of inflammatory reactions, like the cytokine storms that cause so much damage in acute infections. Sympathetic nervous system disruption may also cause the release of stress-related hormones, especially epinephrine and norepinephrine, which can cause rapid heart rate and breathlessness. This may be followed by parasympathetic overcompensation, which causes systemic vasodilation, hypotension, and possible fainting.

Some researchers suggest the virus destroys neurons in the central and peripheral nervous systems, which has negative consequences on heart function.

All this is complicated by the fact that many COVID-19 patients sustain damage to myocardial cells, so symptoms of problems in heart function could be neurological, muscular, or both.

Types and Classifications

Dysautonomia can be classified in various ways. Primary disease occurs without any underlying condition; secondary dysautonomia is a symptom or complication of some other condition. It is also discussed as being either localized, where the autonomic dysfunction affects only certain organs and tissues, or systemic, involving the whole body. Forms of localized dysautonomia might include complex regional pain syndrome (in which an injury leads to a sustained and ultimately intractable localized sympathetic response and subsequent tissue damage), diabetic neuropathy of the vagus nerve (where diabetes causes nerve damage that impacts much of parasympathetic control to the thoracic and abdominal organs), and some others. However, this discussion will focus mainly on types of systemic dysautonomia, which affects whole-body function. See the sidebar on page 75 for a list of types of dysautonomia.

Signs and Symptoms

The signs and symptoms of dysautonomia obviously vary, but they look stunningly like the signs and symptoms of long COVID. Here is a short list:

Balance problems

Blurred vision

Brain fog

Chest pain

Constipation

Exercise intolerance

Fatigue that is not relieved by rest

Heart palpitations, tachycardia

Lack of sweating, too much sweating

Migraines, frequent headaches

Mood swings

Nausea, vomiting, diarrhea

Sensitivity to noise, light

Shortness of breath

Temperature dysregulation, poor tolerance for heat

Treatment

Dysautonomia has no specific cure, so treatment options target symptomatic relief. This may change from day to day, so a person with this problem must develop a strong set of coping skills.

Dysautonomia symptoms can be addressed first by taking steps to ensure healthy blood pressure. That might mean consuming more electrolyte-rich liquids, wearing compression garments to minimize pooling in the extremities, and avoiding being overheated.

Patients are counseled to take care when rising to an upright position—coming from reclining to sitting, and from sitting to standing. Isometric contractions of the muscles of the extremities can help prepare the body for these transitions.

Having a dysregulated heart rate and unpredictable faintness can make exercise a special challenge for many people, but exercise is recommended for its many other health benefits. A workaround that has been successful for some patients is to use a recumbent exercise bike, a rowing machine, or swimming as a way to safely get some physical activity.

Some medications can help maintain healthy blood pressure and support heart function.

Implications for Massage

A person with dysautonomia may not know from one day to the next (or one moment to the next) how stable they will be, or whether they’ll get dizzy or weak or tachycardic. It’s hard to exercise or do physically intense activities because their blood pressure isn’t reliable. They may have the sense that their bodies are not trustworthy, and they can’t depend on being able to do simple physical tasks—much less activities that give them joy. What a gift it would be, then, to experience their body as a fully integrated and beloved whole—if only for an hour.

Like many nervous system disorders, massage therapy is unlikely to “fix” dysautonomia, but our work may add to the quality of life of clients who live with this sometimes-difficult condition. We can support the sense of self-efficacy and help decrease the fear of not knowing how it will be to meet the next challenge. We may also help people feel well enough to pursue exercise on their own. But to do this safely requires some specific accommodations.

Short Sessions, at Least to Start

If the client is new to massage, it may be best to propose starting with shorter sessions until you know more about how they respond to the changes massage brings about.

Don’t Overheat

A common symptom of several kinds of dysautonomia is poor tolerance to heat. This is not the client who needs a room at 90 degrees while you use hot rocks and put a heating pad under their feet.

Finish with Lively Strokes and Muscle Contractions

We want to help normalize blood pressure to ease the shift from the end of the massage back to physical activity. For this reason, it is sensible to conclude the massage with strokes that promote alertness and energy, rather than sleepiness. This can look like rapid effleurage, gentle tapotement, or whatever unique options you love to do. In addition, it’s a good idea to coach the client to contract and relax the muscles of their extremities to help prepare the body for a change in position.

Attend During Transitions

Because people with dysautonomia may have symptoms when they change positions—especially when they come to sitting or standing—it is wise to organize the session so the massage therapist can be present during these transitions.

Dysautonomia was common before COVID-19 came along. It will be far more common in the near future, as millions of people with long COVID find that their ability to maintain normal blood pressure, heart rate, and other autonomic functions is not as reliable as it used to be. Massage therapists are in a position to be helpful and supportive to this population, if we are informed and prepared.

Types of Dysautonomia

Many types of dysautonomia have been identified, and brief descriptions of some of them are provided here:

• Postural orthopedic tachycardia syndrome (POTS): This refers to a group of signs and symptoms that include increased heart rate (tachy = fast + cardia = heart) when a person comes to an upright position (ortho = upright + stasis = state of being). It mainly affects the ability to maintain stable blood pressure, but its impact on many other functions can make it an extremely challenging condition to live with. 

• Vasovagal syncope: This condition involves unpredictable fainting spells, often in response to a strong emotional reaction (the sight of blood, fear of injury) or a strong environmental response (extreme heat). While it is often mild, it can cause falls and risks for serious injury.

• Pure autonomic failure: This describes orthostatic hypotension along with many other autonomic challenges, including digestive problems, urinary retention, decreased sweating and heat intolerance, and sexual dysfunction.

• Autoimmune autonomic neuropathy: This is an immune system attack on acetylcholine receptors. It can involve sensory problems along with motor disturbances.

• Multiple system atrophy (MSA): Unlike other forms of dysautonomia, MSA affects brain function as well as peripheral nervous system function. This progressive condition has aspects of Parkinson’s disease and ataxia (lack of voluntary coordination). MSA usually affects mature people. It is progressive and terminal.

• Other types of dysautonomia: Dysautonomia can be a result of long-term toxic exposures, alcoholism, and peripheral nerve trauma that leads to complex regional pain syndrome. Autonomic dysreflexia, cerebral salt wasting syndrome, and familial dysautonomia are other examples of autonomic system failures. Some experts now consider that chronic conditions like fibromyalgia and chronic fatigue syndrome may also have a dysautonomia component.

takeaway: Dysautonomia is a common factor in long COVID; there is an excellent chance that therapists will encounter clients with this kind of ANS dysregulation.

Resources

Alyesh, D. et al. “COVID-19 Dysautonomia: An Important Component of ‘Long-Hauler Syndrome.’” EP Lab Digest (April 2021).  www.hmpgloballearningnetwork.com/site/eplab/covid-19-dysautonomia-important-component-long-hauler-syndrome.

Barizien, N. et al. “Clinical Characterization of Dysautonomia in Long COVID-19 Patients.” Scientific Reports 11, no. 1 (2021): 14042.                https://doi.org/10.1038/s41598-021-93546-5.

Dani, M. et al. “Autonomic Dysfunction in ‘Long COVID’: Rationale, Physiology and Management Strategies.” Clinical Medicine 21, no. 1 (January 2021): e63–e67. https://doi.org/10.7861/clinmed.2020-0896.

Gurme, M. “Idiopathic Orthostatic Hypotension and other Autonomic Failure Syndromes.” Medscape. Updated October 21, 2018.                              https://emedicine.medscape.com/article/1154266-overview.

Long COVID Physio. “Dysautonomia & POTS.” Accessed December 2021. https://longcovid.physio/dysautonomia-pots.

National Dysautonomia Research Foundation. “What is Dysautonomia?” Accessed December 2021. www.ndrf.org.

National Institute of Neurological Disorders and Stroke. “Dysautonomia Information Page.” Accessed December 2021. www.ninds.nih.gov/Disorders/All-Disorders/Dysautonomia-Information-Page.

NORD (National Organization for Rare Disorders). “Dysautonomia, Familial.” Accessed December 2021. www.rarediseases.org/rare-diseases/dysautonomia-familial.

Sánchez-Manso, J. C., R. Gujarathi, and M. Varacallo. “Autonomic Dysfunction.” StatPearls [Internet]. Updated October 9, 2021. www.ncbi.nlm.nih.gov/books/NBK430888.

Sliney, J. “Understanding the Care and Symptoms of Dysautonomia.” Patients Rising. November 6, 2020. www.patientsrising.org/what-is-dysautonomia.

The Dysautonomia Project. “Mast Cell Activation.” Accessed December 2021. www.thedysautonomiaproject.org/mast-cell-activation.