Fatigue, Pain, and Sleep Disturbance in Dysautonomia

The Impact of Fatigue, Pain, and Sleep Disturbance in People Affected by Dysautonomia

Study Background

Individuals affected by autonomic nervous system dysfunction, or dysautonomia, often report many co-occurring conditions and symptoms including fatigue, pain, and sleep disturbances .[1] When the cause of fatigue is unknown, persists for at least six months, and is associated with post-exertional malaise or pain, it may be categorized as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).[2] ME/CFS is a debilitating disorder which, according to the Centers for Disease Controls, currently affects up to 3.3 million people the USA alone.[3,4] The co-occurrence of disordered sleep, ME/CFS and associated pain, and dysautonomia (including Long-COVID-associated dysautonomia) has been previously established.[6–10] Sleep studies in dysautonomia and ME/CFS patients indicate that patients experience a poor sleep quality, greater daytime sleepiness than tired controls, and changes in sleep cycles and stages.[5,9] While the prevalence of ME/CSF and disordered sleep is in dysautonomia is far greater than in the general population, the exact prevalence of these symptoms/conditions is not clear.[10] In addition, the relationship among these symptoms is not well understood. 

Study Aims

1) To assess the prevalence of fatigue (including ME/CFS), pain, and sleep disturbances in people affected by dysautonomia.
2) To assess the impact of fatigue, pain, and sleep disturbance on different domains of quality of life of people affected by dysautonomia. 
3) Understand whether an increase in one of these symptoms affects the severity of the other two symptoms.

How the study is conducted:

The study is conducted online and participants are asked to complete the following questionnaires only once:

  1. Fatigue, pain, sleep disturbance, and quality of life questionnaires. This should take no more than 10 minutes.

  2. Dysautonomia any co-occurring condition(s) questionnaire. This should take up to 5 minutes.

  3. Economic impact questionnaire. This should take no more than 5 minutes.

Inclusion Criteria

In order to qualify for this study, participants must be:

  1. At least 18 years old.
  2. Have a formally-diagnosed autonomic disorder of any type.
  3. Able to read/write English. 
  4. Able to decide whether to participate in a research study
Sigvaris

Benefits of enrolling in the study:

Your participation in this study is completely voluntary and confidential. While there is no monetary compensation for your participation, we have partnered with SIGVARIS, one of the leading global manufacturers of compression products. Participants will receive a coupon code for 25% off their compression sock order, which can be redeemed at shopSIGVARIS.com directly.  Your participation will help us understand how common fatigue, pain, and sleep disturbances are in dysautonomia and how these symptoms affect this patient population. This is an important step which we hope will help raise awareness of these symptoms in the medical community and improve the quality of life of dysautonomia patients.

CLICK HERE TO BEGIN 

Tired
Exhausted
Pain

The Study Team

The study team is composed of faculty and students with expertise in Biology, Mathematics, and Economics from the University of North Carolina at Pembroke. Please contact Silvia E. Smith, Ph.D. with any study-related questions.

Principal Investigators:

Silvia E. Smith, Ph.D.,   Assistant Professor, Biology Department,  UNCP

Andrew Latham, Ph.D., Assistant Professor, Mathematics and Computer Science Department, UNCP

Co-Investigators:

John O'Dell, M.S.N, M.B.A, Lecturer, Biology Department, UNCP

Daniel Parisian, Ph.D., Assistant Professor, Department of Economics and Decision Science, UNCP

Research Assistants:

Ava A. Cox, Biomedical Student
Karlee Roberts, Psychology Student
Shelley Chavis, Biotechnology Student
Holly Hansen, Biomedical Student
Eugenie Feitosa Amidou, Biomedical Student

References

[1] Bryalrly, M. et al. (2019). Postural Orthostatic Tachycardia Syndrome: JACC Focus Seminar. Journal of the American College of Cardiology. https://doi.org/10.1016/j.jacc.2018.11.059
[2] Fukuda, K. et al. (1994). The Chronic Fatigue Syndrome: A Comprehensive Approach to Its Definition and Study. Annals of Internal Medicine. https://doi.org/10.7326/0003-4819-121-12-199412150-00009.
[3] Clayton, E.W. (2015). Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: An IOM Report on Redefining an Illness. JAMA. https://doi.org/10.1001/jama.2015.1346.
[4] CDC (2024). https://www.cdc.gov/me-cfs/about/index.html.
[5] Burton, A.R. et al. (2010). Reduced heart rate variability predicts poor sleep quality in a case-control study of chronic fatigue syndrome. Experimental Brain Research. https://doi.org/10.1007/s00221-010-2296-1.
[6] Orjatsalo, M. et al.Autonomic Nervous System Functioning Related to Nocturnal Sleep in Patients With Chronic Fatigue Syndrome Compared to Tired Controls. Journal of Clinical Sleep Medicine. https://doi.org/10.5664/jcsm.6924.
[7] Kim, H. et al. (2022). Autonomic Dysfunction in Sleep Disorders: From Neurobiological Basis to Potential Therapeutic Approaches. Journal of Clinical Neurology (Seoul, Korea). https://doi.org/10.3988/jcn.2022.18.2.140.
[8] Jackson, M.L. and Bruck, D. (2012). Sleep Abnormalities in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A Review. Journal of Clinical Sleep Medicine : JCSM : Official Publication of the American Academy of Sleep Medicine. https://doi.org/10.5664/jcsm.2276.
[9] Mallien, J. et al. (2014). Sleep Disturbances and Autonomic Dysfunction in Patients with Postural Orthostatic Tachycardia Syndrome. Frontiers in Neurology. https://doi.org/10.3389/fneur.2014.00118.
[10] Azcue, N. et al. (2023). Dysautonomia and small fiber neuropathy in post-COVID condition and Chronic Fatigue Syndrome. Journal of Translational Medicine. https://doi.org/10.1186/s12967-023-04678-3.