Living in this fast-paced modern world comes with stress factors pressing in on us from every direction, and many people find sleep to be a much needed and still unattainable luxury. According to the National Institutes of Health (NIH), a minimum of 40 million Americans suffers from chronic, long-term sleep disorders. Another 20 million acknowledge experiencing sleeping problems occasionally. So, what makes chasing sleep different for those with Ehlers-Danlos Syndrome, Type III – Hypermobile (EDS3)? To find the answer, we must uncover the answer to a chicken-or-the-egg enigma:
Which Comes First: Anxiety or Insomnia?
Oh, that is an evil question with an evil answer. Why? Because either way you end up sleepless. Anxiety can cause insomnia, and insomnia can cause anxiety, which can cause … You get the picture. You know it all too well. Lack of sleep can literally make you crazy. Okay, that is not the technical term for it, but I am a sleepless, crazy person, not a doctor. Research shows that nearly all psychiatric disorders involve a lack of sleep. Research also shows that people with a chronic lack of sleep are likely to develop an anxiety disorder. What do either of these have to do with EDS3?
In a study published in 2018 by Oxford University Press, people with EDS were found to have a “disproportionately high prevalence of sleep disturbances than expected for the general population.” The findings further showed that people with Classical EDS (cEDS) and EDS3 were especially likely to have not only significant daytime fatigue but may also suffer from disorders causing excessive daytime sleepiness (a different use of the acronym EDS, always spelled out on this site for clarity’s sake) or sleeping too much. Researchers looked into the possibility that subjects of the study had poor sleep hygiene (habits or practices generally accepted as necessary to produce quality sleep followed by daytime alertness) or sleep apnea (a medical condition interrupting sleep). They found that those two factors did not significantly substantiate the high rates of nighttime and daytime impairments in patients with cEDS or EDS3. What does all of this mean? If you have EDS3, there is a considerable chance you have trouble sleeping. And, as noted above, if you have trouble sleeping on a regular basis, you likely have trouble with anxiety, as well.
What Helps Me?
I have both insomnia and anxiety. Some nights my anxiety takes the form of extreme tension throughout my whole body. Other nights that tension increases to something I call restless body syndrome, a situation in which not just my legs, but also my arms, shoulders, head, feet, and hands just cannot seem to keep still. It is as if my entire body is coursing with energy while I am completely exhausted and unable to do anything constructive. And then there are the really bad nights riddled with panic attacks. My psychiatrist insists that my anxiety is a result of my poor coping skills. But my panic attacks strike when I am totally asleep. Other than practicing good sleep hygiene, how in the world do I practice good anything when I am asleep? So, for now, against his will, he prescribes me anxiety medication with the caveat that he does not really want me to use it if I can help it at all. Of course, that medication works on the anxiety and panic attacks (most of the time), but I still have to contend with my restless body syndrome. I think it is actually triggered by some of my other nighttime medications, because the irresistible need to move always kicks in about 30 minutes after I take them. So, for that, I have to take an additional medication prescribed for me by my sleep disorder specialist. Does this medicine ensure a good night’s sleep? Not hardly. What it does do is keep the anxiety, panic attacks, and restless body syndrome at bay. Without them, I am climbing the walls and going without sleep for two to three weeks at a time. Don’t be jealous!
Then there is that other chicken versus egg conundrum:
Which Comes First: Pain or Insomnia?
Or, for that matter, which comes first: pain or anxiety? While the latter question could still be a toss up, there is more of an answer for it. The anxiety is recognized as an independent symptom linked to EDS3. Pain, however, is one of the primary criteria for EDS3. Therefore, it is more a question of which came first: the cat or the dog? Maybe that is a bad example. The point is that they simultaneously come into existence in the life of someone with EDS3, and that is probably at conception, because they are equal components of faulty genes. Do not get mad at Mom and Dad. They probably did not know a thing about it. Both of my parents have died without ever knowing what was wrong with me, because my doctors did not know.
Is Comfort Possible?
Yes, relatively. It is hard for me to be comfortable anywhere. I can find comfort in the front seat of a vehicle, … for a few hours; but I cannot manage to sleep in a vehicle, possibly due to my anxiety. The most comfortable I ever am is in my bed at home, and that takes special equipment, so much so that I cannot sleep as well anywhere without similar equipment. What equipment must I have? An adjustable bed and a contoured pillow. Though I try, I can only approximate that comfort level in a hotel or a reclining chair in a living room.
My bed has to allow me to elevate my upper body due to gastric and pulmonary functions. It must elevate my lower body for the sake of my back and of my feet. Recliners afford me more hours than the front seat of a vehicle, but not as much as the bed. And the pillow took a great deal of searching to find! Each patient will have to find one that fits them uniquely, but most of us need a “special” pillow because of the problems we tend to have with neck pain and headaches.
One of the most important things I have learned about sleep is to try not to worry about it. I maintain a consistent nighttime routine starting at the same time every night, but if I am not asleep when I planned to be, I just tell myself, “Sleep will come when I need it. (This is a lie, of course, but I try to sound convincing.) Now what would I enjoy doing right now instead?”