Joined: Feb 2012
Machine: S9 Autoset
Mask Type: Full face mask
Mask Make & Model: F&P Simplus
CPAP Pressure: 14-20
CPAP Software: SleepyHead
Other Comments: Ehlers-Danlos Syndrome, Hypermobility Type; chronic sarcasm
Location: western NC, USA
Chronic Pain and Sleep Disorders
May is Ehlers Danlos Syndrome (EDS) Awareness month and I came across this post on Facebook. Some of the information is appropriate for anyone with chronic pain and/or fibromyalgia and of course EDS.
[EDS is a genetic disorder where the collagen in the cells is hyperelastic. The types are determined based on which cells are the most affected. For example, in the Vascular Type it is the veins and organs that are the most involved. Most persons with this type die of aortic rupture and few reach their 50s. I have they Hypermobility Type and it is my joints that are the most involved.]
Quote:#EDSAwareness Sleep disturbances are common in EDS. According to Alan Pocinki, "The most common type of sleep disorder seen in the hypermobility syndromes appears to be characterized by excessive heart rate variability at night." There are other problems, too. Apnea occurs for two reasons—one type is obstructive, which people with EDS are particularly prone to, as the connective tissue mutation means our tissue is "floppier" than usual, leading to more easily caused obstruction when the tissue doesn't hold its shape well. Central apnea also happens in some with EDS, possibly because of those interface issues surrounding the area where the skull meets the spine which affect cerebrospinal fluid flow, the cerebellum, and autonomic function. There's a little information on fibromylagia and sleep included, because there's some thought that at least some FM is undiagnosed hypermobility EDS, and almost any of us with hypermobility EDS either do or could carry a FM diagnosis.
From Dr. Alan G. Pocinki's "Non-Restorative Sleep in EDS: A Manifestation of Autonomic Dysfunction":
"Non-restorative sleep in EDS: frequent arousals and awakenings, little or no deep sleep.
"Don’t overlook the basics:
• Good sleep hygiene
• Comfortable mattress
• Dark and quiet
• Elevate head of bed (if lightheaded during the day)
• Treat sleep apnea, limb movements only if significant
"Complex medication “regimen” is often required:
• Multiple medications with complementary effects, e.g. one medication for pain, one to reduce arousals, one to increase deep sleep
• Finding the right combination can be a frustrating trial and error process
• Home sleep monitor may be helpful
"The most common type of sleep disorder seen in the hypermobility syndromes appears to be characterized by excessive heart rate variability at night. Medications to suppress, offset, or block this excess activity are effective in improving sleep, measured both by polysomnography and symptoms. Improving sleep and minimizing daytime stresses helps to replenish autonomic reserves, which in turn improves daytime autonomic balance and also helps improve sleep, which in turn improves daytime function, which in turn improves circadian rhythms and sleep, which is how you get better."
Dr. Alan G. Pocinki's "Non-Restorative Sleep in EDS: A Manifestation of Autonomic Dysfunction" and "Pseudo-Psychiatric Symptoms in Ehlers-Danlos Syndrome", at 2013 annual conference; "Hypermobility Handout" and "Sleep DIsorders in EDS" 2012 annual conference; Breaking the Cycle of Chronic Pain/Poor Sleep/Depression/Fatigue, his general session from EDNF's 2014 Learning Conference, https://youtu.be/9TxKDVkaDFM
Susan Cordes, MS CGC, "Sleep, Pain and Fatigue in EDS" Presented at 2012 Annual Conference
Evaluation for sleep apnea in patients with Ehlers-Danlos syndrome and Marfan: a questionnaire study.
Study of Sleep Disturbance in Ehlers-Danlos
Patients With Fibromyalgia 11 Times More Likely to Have Restless Legs Syndrome
Objective Measures of Disordered Sleep in Fibromyalgia
Sleep-Disordered Breathing: Autonomic Mechanisms and Arrhythmias
Sleep continuity and architecture: Associations with pain-inhibitory processes in patients with temporomandibular joint disorder
Apnea Board Moderator
Breathe deeply and count to zen.
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|05-17-2015 06:10 PM