Many people with a type of Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD) experience issues with:
There are many reasons a person with a type of EDS or HSD may have sleeping issues. Management of sleeping issues should focus on their underlying cause(s).
Most people with EDS or HSD have chronic pain. Pain and other symptoms may make it difficult to get comfortable enough to fall asleep. People with EDS or HSD may also wake up during the night due to pain, joint instability, and other symptoms. Arousals and awakenings during the night can interfere with the sleep cycle and prevent a person from getting deep sleep. This means that a person may not feel well-rested even after sleeping for an appropriate amount of time.
People with EDS or HSD may also experience chronic fatigue. Chronic fatigue prevents a person from feeling well-rested which can disrupt healthy activity and sleeping patterns. Fatigue can also worsen pain and other symptoms that contribute to poor sleep.
Many people with EDS or HSD have other related health conditions, such as a type of dysautonomia or mast cell activation syndrome. EDS and HSD are also associated with higher rates of psychiatric disorders, including anxiety disorders, mood disorders, and attention-deficit/hyperactivity disorder (ADHD). These conditions can have their own effects on sleeping patterns. Medications taken to treat the symptoms of EDS, HSD, and related conditions can also affect sleep and may contribute to daytime tiredness.
Some people with EDS or HSD have breathing issues during sleep, known as sleep-disordered breathing (SDB). There are different types of SDB which cause symptoms such as:
Some studies show higher rates of obstructive sleep apnea (OSA) in people with certain types of EDS. Obstructive sleep apnea is a type of SDB in which breathing stops repeatedly during sleep due to a partial or complete blockage of the airway. More research is needed to better understand the relationship between SDB and EDS. Currently, SDB has only been studied in people with hypermobile EDS, classical EDS, and vascular EDS.
Sleep is an important process that allows the body to function. Lack of sleep can negatively impact both physical and mental health. Management of sleeping issues should address their underlying cause(s).
Medications can be used to reduce symptoms (such as pain, tachycardia, and anxiety) that interfere with sleep. Lifestyle changes and good sleep hygiene can also promote healthy sleeping patterns. Good sleep hygiene includes:
Relaxation and breathing techniques can also be helpful. Each person should work with their care team to find the right management strategies to address their sleeping issues.
Dr. Pocinki is a general internalist in Rockville, Maryland. He has been interested in the joint hypermobility syndromes and related autonomic and sleep disorders since the late 1990’s and has spoken often on these subjects at local and national meetings.
He has received a variety of awards for service to his profession and his patients, most recently the American College of Physicisans Leadership Award and the Ehlers-Danlos Society ‘s Lifetime Achievement Award.
Dr. Russek is Professor Emeritus of Physical Therapy at Clarkson University. She is an Orthodpedic Certified Specialist physical therapist with a focus on Hypermibility Spectrum Disorder, headaches, and fybromyalgia. She has published in the areas of HSD, fibromyalgia and chronic pain. Current research involves prevalence and management of HSD, and PT education about HSD. She is dedicated to educating both health professionals and people with HSD about how to best manage the condition.
Jeannie Di Bon is a pilates and rehabilitation teacher, author of the book Pilates Without Tears and founder of the London-based studio Create Pilates. Jeanie’s areas of expertise are rehabilitation from inury and illness, chronic pain management and hypermobility syndrome and EDS. Being hypermobile herself, she was drawn to the field and now has a large client base with hypermobility and EDS. Through working on her own body and with her clients, she has devised a structured Pilates-based programme called “Strengthen Your Hypermobility Core.”
