When sleeping is hazardous
Wait, what? Jan, we STRUGGLE to get to sleep and stay asleep at all! Much less experience good, deep quality sleep for SO many reasons you’ve written about before!
How can sleeping be hazardous? Isn’t it the Holy Grail of EDS and HSD pursuits??
Well, yes, all of the above is true. Sleep of any quality can elude us for so many reasons as mentioned – bad or chronic pain, hyperadrenergia, insomnia from many reasons (frequent urination, histamine dumps in the night, more) as I’ve previously written.
But… too much sleep and /or too deep can also cause harm.
Huh? How is that you well ask?
Well, as me and my (super rare) hypermobile-savvy chiropractor can tell you, you can injure in your sleep.
I’m quite sure some of you are so used to this and have normalized it so much, you may not even think about it much. And/or, are used to dealing with the fall out. But… how does this happen?
Well, besides the semi-obvious problem of obstructive airway apnea when lying on our backs lending to low oxygen and all that entails (hello CPAP and biPAP machines and mouth guards), many who sleep on their sides also have a lot of problems – with their hips and shoulders.
What? How?
Well, if you are not on a sufficiently soft mattress topper for whatever reasons (cost, MCAS reactions, availability, living conditions), and sometimes even if you are, you may take your shoulders and hips out while side-sleeping.
It can lend to both frozen shoulder, torn rotator cuffs, and full subluxations and even dislocations in the worst cases.
As well as split or shifted sacro-iliac (SI) joints in the hips.
How do you know this, Jan?
Well… I keep experiencing the beginning of these problems every time I roll onto my side in my sleep. (My right side goes out much quicker than my left, for whatever reason. Many find one side or the other will do this, with no clear cause. It doesn’t match our handedness either.)
And while most of the time, the pain from this beginning to happen wakes me up, every once in a while, I’ve either exhausted myself enough, or medicated myself enough that I fail to wake up in time to not do damage!
As just happened to me last week, again, sigh, when I took a whole Melatonin tablet AND a muscle-relaxer on the same night in a desperate bid to relax and fall asleep. It worked, just… a little too well.
In my case, my shoulder starts to go out, but doesn’t quite fully, leaving it shoved a bit forward, and my thorax curved inward (concave chest), and lending to some mild or more brachial and or thoracic outlet syndrome symptoms. (Impinged nerves and blood vessels in the shoulders and at the bottom of the neck lending to tingling, numbness or loss of use of the arms or hands.)
My hip will start to give way, and I can feel my SI joint threatening to follow suit as well when I wake up in pain. So I quickly roll onto my back to alleviate this. So far so good, touch wood. (I split my right SI joint at the height of my onset cascade back in February 2012, so I know this can happen. And also lend to sciatica.)
But again, heaven help me if I sleep too hard!
My friends, to me, in a C-collar and arm sling: “What did you do?”
Me: “You should see the other guy!” haha.
Except it’s not very funny, since my bed wins every single time, sigh.
I have tried mattress toppers. They just allow me to sleep harder and get more comfortable on my shoulder, before I wake up starting to injure. I also react to the material they are made from.
Foam toppers help some, and I am using them on my poor Jan’s bed.
My next move is a fully adjustable hospital bed (no affiliation with this provider, just linked for illustration purposes), such that my head and chest are elevated, but my legs are too, so my butt is in a rut (heh), so I can’t slide down and crook my neck more either. As happens now with the custom foam wedge I’ve put under the head of my bed.
I just slowly slide down during the night until my neck is kinked, sigh. No, I can’t win. I’m just stuck trying to save up for now.
You also can’t easily turn on your side when your legs and torso are both elevated. So this helps prevent that problem all together if desired. But if you have an adjustable bed, then you can just operate it to flatten out when you need to lie flat, or get up or roll over temporarily.
Some folks can’t sleep on their backs at all for other reasons, including the aforementioned OA apnea among other reasons. Thanks weak connective tissues!
I’ve known some friends to literally sleep semi-reclined in reclining chairs for this reason also. Hey, folks are doing what they have to!
And I’m a lucky housed person. My houseless bendy friends experience this also (which is the majority of them), and I can’t tell you how many of them have thanked me for this insight – helping to explain so much of their pain and trouble lying on the hard ground. It’s not just the hard ground at play…
So, I’m counting my blessings, and a few sheep now too. Just not too many, smile…
About The Author
Jandroid
Add a Comment
This site uses Akismet to reduce spam. Learn how your comment data is processed.
Oops, forgot to add – and the attached ribs. My ribs go out easily from side-sleeping too. The attachment point in the back is super painful because of it too. And on and on…
Yup woke up with so much pain in my right shoulder that I CRIED. When do ppl with EDS cry from pain (after they get dx’d and then it’s from relief) since we’ve developed such a high tolerance for it? My husband was sick of taking me to the ER for pain, but my son took one look at me and ran to his father and told him that he needed to take me to the ER. Bound my upper arm and shoulder to hold the joint in place (how do I know how to do that?…EDS, anyone?) and the X-rays showed the joint was in place. Subluxation. And no, I wasn’t sleeping on my side—I was sleeping on my BACK with my elbow bent and my hand above my head. I was just taking a nap (fatigue, anyone?) I didn’t even MOVE when I was sleeping. It’s the story that I tell ppl when they ask about EDS. That and the time I was very popular in the ER when I told the doctor that I had EDS. He asked me if I had the stretchy skin, and I said no, but I can do this—and twisted my hand 360 degrees. He jumped and said Whoa! You need to warn ppl before you do that! I was in there for chest pain—pleurisy, yet again—but they had to do an EKG, and so like FIVE NURSES came in with the machine and the first thing they said was can you really turn your hand around all the way? So I showed them. Now, I don’t dare do it, because it hurts like heck afterwards. I have to take my sons to see a geneticist 4hours away—older son can turn his hand around without having to brace it on something hard—he just sticks out his arm and twists it around. The only geneticist in our big city who dx’s EDS, is no longer accepting referrals from EDS, “because there’s no cure” she’s awful, too, she doesn’t count dislocations unless they’re set by a doctor—as she brushed against my friend’s daughter’s knee, and dislocated it. She actually didn’t believe the poor girl had EDS after all—this was after the new criteria came out! Said girl is presently 18, on palliative care, and she’s so excited about getting her wheelchair. But yes to everything about sleeping! I like to say I finally got 8 hours of sleep—took me three days, but whatever.
Oof, so sorry for your painful expeirence! Who knew sleeping could be so dangerous? But it really is with EDS/HSD.
I dream of the day we are not gaslit by doctors any more. I’m not aware of a single patient who hasn’t had to do battle with disbelieving doctors or nurses at some point.
And no, don’t do those party tricks any more than you have to! Or, better, take pictures after one last “fling” so you can stop doing damage. Doctors need to not demand performance from us either. We can do permanent damage this way! (Parents, take pictures of your kids while they are bendy and doing such tricks, so they can stop doing them to as they age.)
Hi. I believe I may have a type of Ehlers-Danos.y hamds, knees and fingers are hypermobile. I have been diagnosed witth narcolepsy, pernicious anemia, and Brenner Tumor removed that was located on my left ovary. Chronic hypokalemia. I have uterine fibroids. I have allergies to grass, Naproxen and IV contrast . I have dislocated shoulder (acromion process) and C4 in my neck (required spinal fusion surgery ) I have facet joint syndrome, degenerative disc disease, herniated discs, and spinal stenosis. My hip used to pop and physical therapy told me I had two different leg lengths and my hipbone had to be popped back into the socket. I have had issues with joint pain and more recently, my back “locks up.” Whenever that happens, I seek assistance in order to move.
My teeth has literally just started falling apart in the last two years, and I am OCD with brushing and flossing my teeth., Cobstantly, at least 4 times a day.
I have issues with pain everywhere. My skin is stretchy, joints on fingers and knees àrw hypermobile, but lately, my fingers have been locking up also.
I vomit way more than I should.
I bruise very easily. I have hemorrhaged during surgeries and childbirth. My clotting test was 10 minutes but my platelets, PTT amd everything were normal. I develop keloids with my scars.
Migraines.
Extremely myopic. 220/20
I do not have facial characteristics that are associated with EDS4.
I just saw on my DNA that I uploaded to Promethease that I carry the mutation for Ehlers-Danos Type 4. The SNP that states I am homozygous for risk allele and it is pathogenic for EDS IV. So I need to get tested
I debated on EDS because I was thinking it was more Lupus related .
Thank you for sharing. I am a Registered Nurse and I learned more feom this blog than anny health website.
I’m so sorry for your experience! You definitely have some kind of connective tissue disease, whether “just” vEDS, or more, needs to be determined. Have them do a thorough workup for all the rare types as well as related similar conditions (Marfan’s, Stickler’s, Osteogensis Imperfecta.) Gather as much family medical history as you can to this end – I recommend a spreadsheet as I suggested in this long post:
https://ohtwist.com/about-eds/diagnosing-eds
More on when to suspect EDS (not that you need mroe convincing!) But it may help you to inform your doctors if you have these things. (Though I feel you have plenty to suspect a form of EDS, yes.)
https://ohtwist.com/when-else-to-suspect-ehlers-danlos-syndrome
And go easy on your teeth and gums: they are fragile, and you can overdo the brushing and flossing. Twice a day is plenty, as more will not keep them from falling apart. Magnesium and vitamin C if tolerated will do more, I’ve found. (My teeth all loosened at my worst, then tightened back up after I started high dose vitamin C and magnesium in 2012 on the advice of my geneticist.)
Best wishes and luck to you, I hope your doctors listen, or at least one does somewhere,
Jan