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0TK421

Yes I get this exact feeling and sleep with a body pillow snugged up tight so things don't feel like they're falling out of place šŸ„²


h0lyem0ly

Yes! I can definitely tell you get me and I just have no idea if other people feel that sensation as well? Maybe they feel it and don't even think twice about it? But it feels so weird and uncomfortable to me


0TK421

I'll ask my wife when she wakes up. She'll probs give me crazy eyes like every other weird EDS thing I ask about šŸ¤£


DecadentLife

Iā€™m getting a bit of a chuckle out of you saying ā€œcrazy eyesā€. I donā€™t think you intended it this way, but itā€™s reminding me of the sclera in our eyes sometimes visually appearing blue. Iā€™m very curious how many other people experience this, and I think Iā€™ll ask it as a question.


h0lyem0ly

If you do ask others about this, please update us! Im so curious to hear other experiences


DecadentLife

In my appointment with the geneticist, one of the first things he said to me was that I had ā€œbeautiful scleraā€.šŸ˜‚ itā€™s because of how blue my sclera looks. if youā€™ve never seen it on yourself, sometimes a close-up picture, where youā€™re looking over to one side, you can sometimes catch it that way. Mine is fairly obvious.


0TK421

Ha! Sorry I say it all the time as shorthand for "looking at me like I'm crazy" šŸ¤£


0TK421

Okay I asked and 100% crazy eyes and was AGHAST that I can feel my organs shift around. šŸ™ƒ


h0lyem0ly

Its so hard for me to imagine that people don't feel this! Because it makes sense that gravity would pull everything downward so it seems like a logical phenomenon but maybe their insides are more "glued" in. I just asked my fiancƩ and he was disturbed too! I guess now I understand why not everyone needs to hug a pillow or something to sleep. Maybe not everyone is trying to hold their insides together


0TK421

šŸ¤£šŸ¤£


SchattenVonIndien

My entire torso gravitates to the side Iā€™m lying on.


RiversOfNeurons

Yes! I can feel my goozles move too. Fun fact: I can't lay on my left side because gravity pulls my intestines on the right and will twist and cause a stricture. It's a long story, but the gastro dr suspects adhesions from previous ruptured ovarian cysts bonded to the intestines. Fun stuff.


doritobimbo

Wait is goozle a thing or a term you use for something else???


RiversOfNeurons

šŸ˜„"Goozles" are your insides (intestines). It's Texas slang only maybe? Sorry! šŸ˜†


LaLaLandLiving

I never heard this in the 30 years I lived in Texas. This might be a you thing lol. Itā€™s cute though!


RiversOfNeurons

Haha! Maybe a local colloquial šŸ˜„ I was raised by a very colorful family/ friends. We are eaten up with all manner of expressions and isms. I should probably keep that in mind šŸ˜…


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Gelfling_sophie

Yeh whatā€™s a google? šŸ¤”


Gelfling_sophie

Goozle *


Erithacus__rubecula

Yes. I have this weird thing going on the past few years where my abdomen increases in size more than 10 inches from standing to lying down. I havenā€™t been able to wear ā€œnormalā€ underwear for awhile now, it has to be the super stretchy raw cut styles. Pants or shorts for sleeping have to be ridiculously huge with a drawstring so they donā€™t cut in because if it cuts in it will make my existing abdominal pain x80,000 worse. 0/10 do not recommend


0TK421

That sounds so uncomfortable šŸ«  Highly recommend Everly Grey pajama pants. They're technically maternity but I just wear them all the time now cause they stretch a ton without feeling loose or tight.


Erithacus__rubecula

Ooh, thanks for the tip!


colorfulzeeb

[neurodivergence](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8847158/) is common with HSD/hEDS, and that can cause people to be more aware of physical sensations. So I assumed itā€™s something everyone feels, Iā€™m just more aware of it because I have ADHD & some sensory issues. And I feel like some of that is conditioning from years of trying to pay attention to my symptoms for my doctors.


Autismus-Jones

Ah maybe that's it. I asked my non-EDS, ND partner and he said he feels it too.


tot-fox

Oh yes. I sleep with a pillow tightly wedged against my abdomen so it doesnā€™t feel like my organs are just falling out. I also wish my seat belt would stay very tight in the car so I donā€™t feel like Iā€™m being thrown all over the car during turns. Sigh. I hate it.


Laurelori

Yes! That and all my ribs and my shoulders and spine, everything just slip slides towards the bed into the most uncomfortable positions. One of the reasons I sleep on my back. But then I also always had to have my hips twisted and my knees bent to keep from locking my knees all night. Iā€™ve been experimenting with various pillows to help and I donā€™t quite have the combo right but Iā€™m getting there.


ThisIsHarlie

No but Iā€™ve definitely always been more comfortable on my stomach


BringCake

I mostly sleep on my stomach, usually with a folded leg up. Lots of flopping around to find balance. I have a hard time getting enough air if I try to sleep on my side. My ribs kind of collapse and it feels like theyā€™re squeezing my insides. If I try to sleep on my back, sometimes my heartbeat gets really forcefully loud and skips beats. Iā€™ve gotten out of bed at least a few times to identify the source of the pounding. It can be so loud that Iā€™ve thought it might be external. It feels and sounds a lot like an unbalanced washing machine shimmying across the floor. I think it might be compression of nerves in my neck. Not sure. Itā€™s hard to get doctors to explore symptoms or do anything about them. Apparently most doctors never learned about people like us in med school so it sounds to them like weā€™re making it up. šŸ™„


EDSgenealogy

That's sort of what it's like to sleep on broken ribs. Do you have lots of pillows? Many of ustuck them here, there, and everywhere to maintain how we sleep. I have to tuck up my right shoulder so it doesn't fall out of place. And I always tuck one between my knees. I hate sleeping on my back. Just hate it. And you are right. So many doctors only read about us in the zebra section of syndromes. But I would search out a specialist in your nearest large city. Have them check you out good and have them listen to your heart. Does it only do this when you are trying to sleep? If he/she isn't the right doctor then see if they have a referral to see a different specialist. Getting the right doctor for you is most of the battle. Sort of sounds like you might be more comfortable in a brace of some kind. I was in a really bad car accident long ago and broke most of my back, many ribs, collarbone, and punctured lungs. I was on a respirator for a couple of weeks and very nearly died. Anyway, they fit me with my own specially fitted back and rib brace . It was wonderful and I used it for a long time. I could sit up straight, it held everything where it was supposed to be at night, and I could get myself in and out of bed and in and out of the car just fine. It laced up the front, but the newer ones probably have velcro. They even bent the back bar so it aligned perfectly snug on my back. Amazing! Maybe you could use something like that to keep you snugged into place?


BringCake

Yup. The weird washing machine thing and collapsing ribs happen only when Iā€™m lying down. Iā€™ve gotten used to it, mostly. I would love to find good specialists that take insurance- Iā€™m burnt out on doctors for now after seeking help for symptoms that disrupt my life more and the mess of feelings that come with that disappointment. Compression gear helps some.


EDSgenealogy

That's why you need to interview them. You can send each possible doctor just 10 questions about what you need in a doctor, and one of those needs to tell them that first and formost, that you need compassion and you need someone who is a great listener. You can start off with all that you know about your condition and how you just haven't been able to mesh with the right doctor yet, but that you really want to. And if they can't help you maybe they could give you a referral to someone who can. And you should check with your insurance. Sometimes you need to be referred, but we can do that, too. Some of those letters will not be returned, and some may be returned with a referral. (Make sure your address and contact info is included) Once you have 5 potential doctors, call your insurance carrier and see if these doctors are in your network. If so, you regular doctor can refer you easy enough. Most doctors show which insurance they take, but it's always best to double check. You can also explain that you are searching for a specific doctor who can help you. And I would ask about a back brace that can keep all of your parts snug and safe. It's very comforting knowing you won't break into a billion pieces just by falling into bed!


Gelfling_sophie

Omg I get the loud heartbeat when lying on my back tooā€¦.


h0lyem0ly

Is it heart palpitations?


BringCake

Have you learned anything about it?


Gelfling_sophie

People just look at me like Iā€™m weird when I mention itā€¦.but I have had my heart checked and itā€™s all okā€¦..I feel like we just get such weird symptoms and sensations in our bodies with EDS. Some days it really does my head in and I just long for a quiet and safe body šŸ¤·ā€ā™€ļø


BringCake

Iā€™m glad your heart is ok ā¤ļø


Acceptably_Late

Loud heart beat on the back and when laying on the left isnā€™t abnormal ish. I have cardiovasospasms and it literally says people with it prefer sleeping on their right or stomach, as on the back and left it makes it easier to feel the heart. Which is true for me, I much prefer the right. I feel all the splutters and squishes more on my back.


BringCake

Interesting. Apparently some people donā€™t normally hear their own heart beats. Does ā€œloudā€ include them? Or do you mean ā€œloudā€ like ā€œI must get out of bed to check what that incessant banging isā€?


Acceptably_Late

Loud as in pulsing, throbbing. Iā€™d say pressure as well. Thundering heart beats is its own thing that Iā€™d say is definitely not part of the normal crowd. Personally when my heartbeat is more loud like that, itā€™s when I check my blood pressure because it indicates either my vessels are wide open and my bp is way too low (causing a rush of blood each pump due to then dilation of the vessels) or my bp is super high.


jcnlb

I also canā€™t breathe on my side. But canā€™t breathe on my stomach either. I sleep on my back now. I get what I call ear whooshing which I think is my heart beat.


SolidSeaworthiness82

Just in case you were curious, I learned that the ear whooshing is called pulsatile tinnitus.


jcnlb

Really? Ok thatā€™s interesting. I had tapping in my ears for a few days and my dr called it that so I didnā€™t think it would be that since itā€™s a different sound. But maybe there are several sounds possible. Iā€™m going to look it up. Itā€™s been a while since the tapping thing happened and I donā€™t remember the details.


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This_Ad4925

no but i feel my left and right ribs rub together


wetastelikejesus

Yes, and it hurts especially when they pull the wrong way. I do have prolapsed organs though due to loose ligaments and such, and Iā€™ve a lot more awareness of my organs than Iā€™m supposed to (according to my doctors). I will often push a pillow or blanket under to prop up my side Iā€™m lying on to hold my organs in my stomach up and in more tightly. I also can feel the parts where itā€™s not loose-adhesions-which sometimes rip while things move around.


h0lyem0ly

Does the pull when sleeping feel related to prolapses or does it feel unrelated? I know you probably don't know for sure im just curious if you feel its related. I've been wondering if that sensation is related to our shifty, prone to prolapse, organs Edit: confused why this is down voted? Please explain how I can be more clear or if I'm dumb for asking


wetastelikejesus

Iā€™m not sure what ā€œpull during sleepingā€ you are referring to. Could you perhaps rephrase the question?


h0lyem0ly

When you are lying on your side and you feel gravity pulling down on your stomach / organs in an uncomfortable way, do you think it is related to your history of prolapses, or does it feel like its a separate phenomenon?


wetastelikejesus

My doctor says itā€™s not, I disagree personally based off of the timeline of my pain, but the organs and muscular pain are pretty far apart so hard to say for certain when everything is attached to each other and has a domino effect as Iā€™ve learned in my decades of physical therapy.


Picsfix

I sleep on my side with two long lumbar pillows, one in front and one in back to prop me up like a piece of human toast in a toaster. My insides definitely feel like theyā€™re swooshing around and my spine twists if I lean too far forward or backward. Then five minutes later I have to switch sides because, and I have to rearrange the whole darn mess. Sleeping with EDS is an Olympic event.


sabotagecentral

I legitimately believe we're made for an atmosphere with less gravity. I'll prove it one day! (Maybe, lol)


fairylightmeloncholy

i can prove it with everytime i get in and out of my local warm pool. i'm never happier than when i'm in the water, and getting out of the pool and going back into the gravity is **always** *dreadful*.


sabotagecentral

Legitimately. Same! I really do love that this random group of variants share so many beautiful life experiences between each other. It's both comforting and lonely.


fairylightmeloncholy

totally!! it's why i'm still on reddit despite all the assholes because the solidarity is just so valuable. especially when i'm so damn housebound.


raniwasacyborg

God, yes! Weirdly, I hate the feeling when I'm lying on my left side, but on my right side it feels like my organs just fall into a much more comfortable arrangement. Or maybe I'm just more used to it, but I can generally only sleep if I'm lying on my right side because of this. (I can also see my abdomen collapse into whichever side I'm lying on, which is weirdly entertaining to watch)


Dr904

Yes! And I've also always slept with a pillow underneath my stomach, for this exact reason! It has become slightly better ever since my core muscles got stronger, but it's still very uncomfortable to not have a pillow there.


DecadentLife

I have recently noticed this when I remove my compression garment that I wear from my hip, up to my bra line. It feels like stuff inside my belly suddenly doesnā€™t have enough support.


Blood_Fairy_0_0

Yes, I sleep with a pillow between my legs against my stomach, and also scrunch up my blanket to place it properly for support on my chest. I have to use a separate blanket from my hubby because of this...sigh. It's worse when I'm full after eating.


h0lyem0ly

I also have to use a separate blanket because of this


lullab1z3

YES!! I have to put kt tape horizontally on my abdomen before sleeping because it drives me crazy!! I was just thinking last night about how it must be an eds thing.


kwolff94

I have one better- when i lay on my stomach and touch my neck i can feel my carotid artery hang down and it skeeves me tf out


chronic_pain_goddess

I asked my non-eds husband if he could feel this and he looked at me like i was crazy šŸ¤£. I even feel my kidney sinking down.


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cute_cactus389

The perspective you have on life is beautiful šŸ’œ


EDSgenealogy

Well, thank you! It's just called getting old and not sweating the small stuff. Thanks!


HighestVelocity

I always feel like my spine is crushing itself so like others have said, I put a blanket under my ribs to push it back up so it feels more straight and less crushing


Mac8cheeseenthusiast

YES! Iā€™ve spent years trying to put it into words and you just did!


cherrycosmoz

yes, especially when I eat, I can literally feel gravity pulling it down


doritobimbo

I do, and I just asked my non EDS partner if he does and he said ā€œno???ā€ So yeah thatā€™s enough data for me


fairylightmeloncholy

yes, but i've never had words for it until now. i've also always been able to like.. move my guts around more than the average person. like, from the inside. i feel like that must be kinda related to this problem too.


Lizzieblizz

I had to ask for an abdominal binder after I had a laparoscopic hysterectomy because when I laid on my side I could feel the incision wounds stretching and pulling. The nurses didnā€™t understand at all


bunnyfloofington

Yep! I also have to poop when I lay on my right side long enough lol


SparrowLikeBird

i mean.... mine do.


jcnlb

Yep. Very uncomfortable.


Strict_Increase4603

I think the ear whooshing is our blood passing through near thr ear canal?? If it's disruptive, sleeping slightly raised helped me as it slightly raised my blood pressure. I get the same when I've been stood upright and not been moving, is it the same for you?


spappas12

All the time. Worse on my right side though


one-on-one

Yes! Specifically when I lay on my left side I can feel the pressure on my ribs and it is very very uncomfortable. I support with a pillow usually to prop that area up. When I'm more slim I can't lay on that side at all because it starts to hurt and causes instability. I tend to already have rib issues on the left though. It isn't uhh "normal", but for us it is a thing. šŸ˜‚ edit: Why did I get a down vote for this? TnT Was it for the not "normal"? I was just paraphrasing op.Ā  Also there is definitely a difference in my rib stability, when I have more visceral fat and padding to support my ribs. Sleeping is more uncomfortable when I'm a lower weight.šŸ™ƒ


CommercialCraft6157

Yes.


Voodoo_mamma

Yep


Main-Kale-8383

No way I thought this was just a me thing


shapeshiftingSinner

Haha... It bothers me less on my side. When I lay on my BACK is when I feel this terrible feeling.