Exploring the Possible Connections Between My EDS Fatigue and Pain Flares

A lack of sleep and stress exacerbate this columnist's Ehlers-Danlos symptoms

Karen Del Vecchio avatar

by Karen Del Vecchio |

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The last couple weeks have been exhausting. I’m a teacher, and the beginning of school is always an adjustment as students get settled into their classes and I learn their personalities, strengths, and weaknesses. In addition to that, I’ve been taking care of an injured horse and doing a lot of extra chores at the horse farm where I live. Between the stress and the long hours, it’s been a rough start to the school year.

With Ehlers-Danlos syndrome (EDS), chronic fatigue is one of my toughest challenges. I’ve often said that if there were one thing I could change about EDS, it would be the fatigue. I’d love to get a normal amount of sleep and wake up feeling rested, but rarely do. While I do best with at least 10 hours of sleep, I work full time and have other responsibilities, so it’s simply not possible on most days.

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Understanding my Ehlers-Danlos symptoms

After a week of getting only five or six hours of sleep a night, I became exceedingly sore. It got me thinking about a possible connection between the two: Was my soreness flaring because I was tired? Or was it because if I’m exhausted when I go to bed, I’ll wake up in the same position? I think the lack of movement at night may cause its own problems, as I become stiff from lying in the same position for hours at a time.

I’m not sure which of those two factors plays a bigger role in my pain flares. I also don’t know if it really matters. The two are inextricably linked, and I can’t really do much about either one. Some days, life just happens, and we don’t get to bed when we had hoped to. I can’t make myself move or roll over when I’m sleeping, so that’s just life as well.

When I finally made it to the weekend, I knew I needed to prioritize catching up on sleep so I could recharge myself. I actually slept for 14 hours one night, which I haven’t done in years, and felt much better afterward. The next night, I slept for 11 hours, which allowed me to start the new week feeling more refreshed.

With two good nights of sleep, I noticed that my pain level had decreased, although I was still sore. That gradually improved over the next few days. My massage therapist also helped calm things down.

Some weeks are just exhausting and long. But I respond by prioritizing self-care as quickly as possible, recognizing the cause and effect of my EDS symptoms, and doing my best to remind myself that I have strategies to get my symptoms under control.

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 other 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.


Frances Miller avatar

Frances Miller

I can't imagine sleeping that long., at anytime. I'm lucky if I get 4-5 hours real sleep. I'm constantly waking up because if I'm laying on my side my shoulder and hip hurt. Turn over to sleep on the other side and it's the same. Lying on my back is not good because my SI joints are very painful. I can't afford massages or other treatments which are not covered by Medicare or my insurance. I'm 74 and just diagnosed last year, only because my Granddaughter was diagnosed. I didn't even know there was such a thing as EDS. In all the years I went to Orthopedics, Neurology, PT, Rheumatology,, etc. no one diagnosed me with EDS. PT used to be amazed at my flexibility. I still don't have a Doctor who really knows anything about EDS. There is one listed who I did see, but he really didn't seem to be that informed. It is so difficult when you have no one to help.

Donna Wildman avatar

Donna Wildman

I also find that if I stay in bed too long, that is just as bad! I was never one to sleep much-4 hours and I am good to go. But after a few car accidents, I try my best to stay in bed for 5 1/2 - 6 hours. Too little sleep sets off severe headaches and too much time laying down gives severe body pain! Trying to explain this to family just doesn't go well. Now with a diagnosis, it helps but still can be frustrating.

Shoshana S Grambo avatar

Shoshana S Grambo

Wow! I can't even fathom staying in bed that long! Not for sleeping ---- which l do very little of ( EDS Hypermobility type means ...pain all over for me). But l definitely can't stay still that long😳. Sort of comforting to know that this pain cycle is potentially linked though...it is the same for me too. Lack of sleep means increased pain for me as well.


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