Ways I improve sleep quality and minimize fatigue with EDS

Even small improvements are worth the effort

Karen Del Vecchio avatar

by Karen Del Vecchio |

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Last week seemed to drag on forever. Although I was finally feeling better after a rough patch, it got me thinking about how rest is a double-edged sword for me with Ehlers-Danlos syndrome (EDS). I definitely feel that I need more rest than most people, but I also deal with my sleep’s quality because of EDS.

As I’ve said numerous times before, chronic fatigue is by far the EDS symptom I struggle with the most. I feel exhausted all the time, and it’s frustrating to wake up feeling as tired as I was the night before.

Lately, I’ve been reflecting on the idea of quality versus quantity when it comes to sleep. I learned long ago that simply getting more sleep isn’t the solution. Instead, I’ve been examining what seems to affect the quality of my sleep.

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I’ve found that I usually feel rested when I wake up around 7:30 a.m., as I do on the weekends to take care of farm chores. That holds true even if I go to bed a bit later than usual the night before. I wouldn’t make it to work on time if I woke up at 7:30 on weekdays, but it’s the perfect time to set for my alarm on weekends.

A while ago, I gave up on using my heating pad on the couch at night and just started using it on its lowest setting when I go to bed. I figured that, because I was falling asleep with it on the couch anyway (it has an auto shut-off feature), the change wouldn’t make much of a difference in my muscle pain and stiffness.

It did, however, prevent me from falling asleep on the couch and then waking up and going to bed an hour or two after my usual bedtime, which almost always affects how I feel the next morning. For me, taking the heating pad straight to bed is a much better plan, as I’ll feel less stiff and more rested in the morning.

The biggest factor in my sleep quality, though, is something I have little control over: whether I’m having a pain flare. When I’m in pain, it doesn’t matter how much sleep I get; I’m going to wake up exhausted.

Although that bothers me, I’ve learned that the best thing I can do is limit how much I let it bother me. Stress and anxiety make my pain worse, which in turn affects my sleep — and off I go in a downward spiral.

Even if the changes are small, I have to find ways to chip away at the difficulties I face in life with EDS. I can’t control everything, but I can decide when I go to sleep and wake up, and I can set myself up for success with my heating pad. Even a little improvement is better than none, and I’m grateful for anything that helps me wake up feeling more rested.


Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.

Terri Russell avatar

Terri Russell

I have also found if I put a king size pillow between my legs while side sleeping, and elevate my bed slightly for better breathing , it’s very helpful…..I also use Salon Pas pain patches….the origianl ones….as well as CBD drops in my tea before bed.

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