Hypermobility/EDS and Sleep
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- Опубликовано: 29 сен 2024
- It’s not uncommon for those with Hypermobility and EDS to have difficulty getting into a comfortable sleeping position. Subluxating/dislocating joints, gastric issues, pain, and even anxiety, are all factors that many of those with conditions like Ehlers Danlos syndrome and hypermobility struggle with when it comes to sleeping.
With so many with hypermobility struggling with sleep, you would expect to find a wealth of information on how to actually sleep better. However, when looking online you find the same old advice, tips and tricks across the internet. Relax before bed, don't use screens, blah, blah, blah.
So, the purpose of this video is to cover hypermobility sleeping positions, for the larger more comprehensive article we wrote on hypermobility and sleep.
Full article here: www.thefibrogu...
Check out our hypermobility online course here: www.thefibrogu...
* A Little footnote: I should of said cardiac patients favour their right side, I just noticed this when watching the video back*
Adam could you include a link to the pillows you favour please, there are so many available, I need to spend my money wisely! Thank you 😊
@@bigbird3970 Sure, the one in the video can be found below if you follow the link.
As with all pillows, stick them in the tumble dryer for 5-10 mins to fluff them up before use 😀 or if you have had it for a while.
www.amazon.co.uk/dp/B093YG8964?ref=ppx_pop_mob_ap_share
@@Thefibroguy excellent, thank you Adam 👍
So glad you corrected as my ex used to sleep on his right because the left side hurt his heart and I was really wondering.
I was confused. I have hEDS and I just can’t handle the way each heartbeat slams against my chest when I sleep on my left side. It’s very uncomfortable even though my heart rate is only in the 50s.
Waking up from a dislocated shoulder is always so much fun. At least it goes back in easily
Yeah nothing like screaming yourself out of a dead sleep to feel like you have phantom limb syndrome. Has happened so many times to me. And when it doesn’t I still hate how I get constant neck cramps and shoulder pain when I get up.
I am 33 and trying to get diagnosed with EDS. I saw this video about 4 days ago and my pregnancy pillow arrived yesterday. I woke up this morning and my face doesn't ache from sleepiness, my joints feel better, I didn't wake myself up from SI pain trying to reposition myself multiple times in the night. You may have changed my life and I am so incredibly grateful. I seriously don't have the words. Thank you.
Aw nice one Stacy! Knowledge is power and its great to see you taking back some control. Sleep is so important, so this is brilliant news 😀
lol I’m 33 and just found out I’m hyper mobile hahaha and I also found this video 4 days ago 🤣🤣 yes I know it’s a month apart but hahah TWINS !! My right side from my neck to my hip are all out of whack ! QL, SI, Groin, shoulder 😫😫😫
@@jsjourney3295 that's awesome 🤣 twinsies!
I am also 33! Had no idea I was hyper mobile until I say my rheumatologist (for my arthritis) for a check up. She realized I was a 6-7 on the scale, which I had no idea because I compared myself with the extreme cases I’ve seen! Seems like soooo many of us suffer with chronic pain, poor sleeps, and SI joint pain specifically!
Please please please get life insurance B4 you get diagnosed as I can't get insurance now ... I can get travel insurance through but u also have to check that ur medicines are OK in the country with the embassy with the country you are going Not just take it for granted that its OK because the travel insurance said so .
I'm 22, hypermobile and have had insomnia most of my life. The most comfortable nights of sleep I've had have been in a cheap net hammock whilst camping. I don't know if it's advisable, but I'm probably going to end up installing one if I ever own a house
I bought a metal hammock stand to have a hammock in my apartment, it's easy to disassemble and store away too!
Hyper mobility is connected to histamine intolerance and MCAS
Your histamine may be high.
A low histamine diet for even a few days may help you confirm.
Mast cell 360 has the best list of foods to avoid
I’ve had insomnia & Hypermobility too x shame drs told tell you any of this valuable info x
@@naniki29 makes sense. I have loads of random allergies that only trigger sometimes. I have to pick my battles with the dr's tho, as it's hard enough to make them listen anyway
my ex uses a free standing hammock stand. serves him well
On the face down position, you put you face on the edge of the pillow, instead of in the middle. This way the neck is less craned. When I have a cold, I move my head and pillow to the edge of my bed for even more air circulation.
Another possibility is the half down, half sideways position, where you are angled between perpendicular and flat...
I’m too much for my G.P😂😂 no seriously though, I give up.
I’ve been diagnosed with benign Hypermobility, gerd, fibromyalgia, insomnia, TMJ disorder and anxiety/depression.
I’m always in pain on different scales, but I’m totally fed up as a human being.
Fantastic video! I’m hypermobile, and I am also a bodyworker and trainer who specializes in working with hypermobile folks. This is such a great resource! I appreciate you!
This hit ALLLLL the points and described why I do not sleep well. Mind blown. Very helpful
Not me watching this while laying on my side and my shoulder falling into my chin and arm twisting all weird 😅😅😂
Thank you for this video. I am sleeping with the C pillow for a week now and i feel so much beter. And my back is almost not hurting annymore during the day. Thank you ❤
I'm hypermobile + ADHD and I have a pregnancy pillow for 2 months. I sleep much better now, more comfy, more snuggly. However, mine is a little too high on the head, I may need to put some of the filling out. And biggest problem: I'm moving a lot in my sleep, and I also need to have this freedom. Usually I turn around a lot and it's like a workout each night. The big pregancy pillow is restricting and that wakes me up some time in the night and I need to kick it away to not get too irritated...
I feel like this video is a life saver! I sleep on my right side, have GERD and major issues with my shoulder hypermobility causing issues with my collar bones and my hips....I have struggled with pillows and mattresses most of my life. This has so much info that I feel will actually help me!! Thank you 🙏
5 minutes in and I saved this video. Thank you so much for this info I'll definitely be subscribing.
This channel should have more views. This video is so informative. Thank you!
7 pillows. under my ankles so feet dont' touch anything. 2 between my knees. one on each side for my head. one to hug. one for resting my hand/arm so elbow doesn't over extend. roll from side to side all night. many sedating Rx, 2 benadryl, 50 mg Elavil, 30mg melatonin, cetirizene, 10 mg flexiril. I saw a sub Dr when mine was on vacay. she said that I shouldn't be taking so many sedating meds. I said WELL I HAVEN'T WOKE UP DEAD YET! in my head I said "mind your own freaking business". my dr has no problem with it.
I’ve learned to sleep against the wall at a diagonal angle. I’ll set up a blanket against the wall, a soft pillow, and a body pillow in front of me to separate my arms and legs
Words cannot express how much I appreciate all this information! I believe this is what I have and I am just starting to research!
i knew the need for a soft mattress had to be related. i noticed a big difference staying long term with family using an old firm mattress vs. the two futon mattresses i had stacked with a pillow top cover. my body is literally crying for replacements.
I sleep in stable side position most of the time everything else feels to wobly . But i get inflamation of my chest bone sometimes from the presure . so this is a really good video 😅
I think that's what's going on for me right now! Not fun.... How's yours doing and did anything help? @ninavandenabbeele9667 ?
@@neon.neutral to be honest it comes and goes so far taking anti inflammatory painkillers like ibuprofen and putting something under my arm so it doesn’t pull my shoulder down helps the most . But there’s not much else you can do for pain in other joints gaining more muscle seems to help
I sleep all over the place 😅 constantly moving trying to find a pain free position ... buying a pregnancy pillow, my symptoms are hips, leg, back, neck and shoulder mainly on the right side. Tried smaller pillows/props in the past with no joy so maybe the bigger pillow will help. Tiny hips . Good video 👍
Good,informative video. I would just like to add that one of the problems with the pregnancy pillows for me is that I find them too hot. I have transitioned from back sleeping to side sleeping but still only get decent sleep if I am cool. For me this is a summer weight duvet in the depths of winter and only a cotton sheet in summer. As you say trial and error. 🙂
It’s funny that you mention that as I run hot constantly as well. The C pillow I use comes with different covers, and then one I have is the cool cover, it doesn’t heat up 😀
Maybe a bamboo wife might be an option it's not the same but it might help against the heat plus with stabilizing hips and shoulders
R u in the Deep South?
I have to be warm enough to sleep but I do like it mid60s ideally, in the room
Lotttttts of covers
@@Thefibroguysilk pillowcases stay cold
I'm hypermobile and toss and turn from the pain all night. I can't remember the last time I had a good night's sleep. I'm going to have to try one of those pillows!
Hello, thanks for the info! As I get older I am experiencing more issues relating to my hypermobility but it’s also motivating me to look into what I can do to help manage the condition.
I have realised that my symptoms are worse in the morning, likely due to poor sleeping posture and the pillow you have demonstrated in this video looks like a promising solution!
Please can you share a link to the pillow?
Would love to get your thoughts on the zero gravity sleep position (both back and side with the bed in a zero gravity position)! And would really appreciate the name of the pillow you use in the video. I got the Medcline system a year or so ago and while it helps the shoulder issues, I’m still struggling with back pain :/ their body pillow is fantastic but they don’t have a u shaped version which I think would be super helpful for me, and I haven’t seen any comparable pillows (in terms of materials and such) so far :(
very helpful, thanks
WHERE DO I BUY ONE OF THESE WRAPAROUND PILLOWS?
I’m not diagnose hyper mobile but I have extremely lax shoulders, and I have knee issues. I had a pinched nerve in my neck and in turn with taking steroids had to sleep on my back… I tried the whole pillow under the knees which didn’t help. Once I was done with the steroids it was back to sleeping on my side.
I’ll try to see if I can get one of those pillows. I recently found pillows that are fiberfill and feathers, they are a mix of my favorite thing about a feather pillow, and my favorite thing about a fiberfill.
I also need to get my room clean so I can get my new mattress from my sister’s house and see if it will help.
To note I have knowingly dislocated (and personally relocated) one of my knees twice. Now they sublimate a lot. I’m pretty sure I’ve dislocated ribs and one of my hips on several occasions. I have dislocated my right shoulder blade several times, and I can tell when it it because it hurts to move, it also juts out more then normal.
This is great, thanks. I know youre not doing affiliate links but any chance of a link to the pillow? Or just what to put into google? 😊
Can't live without my pregnancy pillow!!!
I have extremely unstable knee and hips joints so I have the strangest mix of pillows all over my bed to support everything. So glad I came across this video!
Ikr
Once fully dislocated my knee while sleeping. I was like ahh shit cant i even sleep now.
And now the knee needs a pillow underneath .
2 nights sleeping like this and best sleep I’ve ever had. No joint pain on waking. No round the bed trip trying to get comfy. Only have a V pillow but just ordered a larger one. Keeping me off my shoulder I’m waiting to have physio on after repeat sublux (Hyper mobile). Only diagnosed 2 weeks ago at 42 and so glad I found your socials ❤
Oh that’s soo good to read Emma! 💪🏻 nice one!
How were you diagnosed? I want to ask my rheumatologist. I want to rule out all the Eds’
Been having tendonitis bilaterally that won’t heal, spine neck and an array of weird symptoms ball over… gut issues all weird… thank you!!
@@AntonioLiberato08 diagnosed via rhumatologist with hyper mobility. They’re querying Eds but getting anywhere along to get that diagnosed is as easy as finding unicorn poop.
Just last week rheumatologist said I have hyper mobility cause leg pain. Glad that I found this video. May I know what is it called ? Is any special category of pillow where to get?
I have had issues with my throat on and off for years! I have tried so hard to find the proper terminology for what’s been happening and have seen multiple doctors with no help. I even went to the ER one time because I felt that it was affecting my breathing and I was in a lot of pain every time I swallowed. No one knew what was wrong. Over the years I’ve found that aggressively coughing can pop things back into place but it still brings on a lot of anxiety when it happens. Thank you so much for talking about the hyoid bone, it’s helpful to know what is happening!
Thanks for the kind words Danielle 😀 I purposely made sure to include this in the video, because whilst it’s not a super common issue we see in our hypermobile clients, it occurs enough that we have noticed it and have had to develop protocol’s help people with it.
I actually have in my diary to shoot a video about it and the causes, along with how to get the hyoid to sit lower again, so please keep an eye out for that video 😀
@@Thefibroguy I will definitely keep an eye out for that video - thanks!
Ok this is so weird I've been feeling for a while that my throat is messed up almost pops when I swallow and feels like something is out of place...good to know I'm not crazy
This is so wild because I was hospitalized as a kid because I was so scared to choke because of this sensation! Then id do something to fix it myself after a while. Now when I happens I don’t freak out and I’m able to correct it without incident. didn’t know this was all tied back the hyper mobility
Yeah, been there too a couple of times and seriously unpleasant and hard to explain to doctors without sounding just a bit weird!
I felt so called out in this video in the absolute best way! Been having shoulder issues the past few months I couldn't figure out. It's 100% the side sleeping. Interestingly, I have less acid reflux on my right side instead of the left. Just ordered one of those pillows. Thank you for this video!
Our adrenaline kicks in at night with EDS too. An adrenaline blocker like Metoprolol ER Succinate can help.
This is exactly what happens to me! I get a burst of energy at night 😒
Wow! Thank you for this video! I was diagnosed with EDS and POTS 5 yrs ago following the birth of my daughter. I have struggled with insomnia since I was a kid, but it became debilitaing (as well as the POTS) to the point of forcing me to quit working. Severe GERD that didn't resolve after my pregnancy didn't help. Long story short, even after my diagnosis, working with doctors that dont understand all the implications of EDS, it has taken a lot of research on my part to realize I was subluxing my shoulders, hips, and ribs. I bought a giant pregnancy pillow and trained myself to sleep on my back with my adjustable bed's head raised. I actually have the middle curve of the pillow under my knees and hug the ends of the pillow under each arm. It keeps me from rolling over. When i have issues with my shoulders rolling forward and my lower back becomes strained i place a long, thin round pillow along the length of my spine from top of the tail bone to the base of my skull. Seems to help and i have finally managed to get an average of 5 to 6 hrs of good quality sleep. I also recently had an endoscopy and barium swallow test for the exact thing you were describing with hyoid displacement! (My drs agreed that that was the likely cause of my discomfort after i showed them some research!) Sorry for the long comment but I wanted to express my gratitude for the validation your video gave me and is in a form I can share with drs and those around me that dont seem to think that sleep can cause me so many issues. This was incredibly informative, covering many comorbities in one place when it is so rare for those to ever be mentioned in any sort of context that someone with EDS would encounter it and be able to bring those concerns to their drs. So..... THANK YOU! ❤
I have hypermobility and I think this video just saved my life. I just slept for 9 hours straight with the pregnancy pillow and woke up with NO pain at all!! Bless you for sharing this and thank God for leading me to you.
What's the pillow called I have all of what you've mentioned and not getting good sleep
It's in the pinned comment. I had to sort by "newest" to see it.
I have just turned 60 a couple of days ago and have recently been told that it's likely I have Hypermobility. I've been telling people for years I have over the top flexibility and not one of those doctors said anything, So my journey and new bed starts now. But I do have one question if you wouldn't mind sharing. "How big is that bed"? 😂😂😂
Do you have any u shaped pillow recommendations? A lot I see online are not as advertised (flat and thin)
Left hip hurts.
Right side = GERD.
Flat on my back = Snoring.
Ahhhhhh !!!
28:02 dude u sold me on the pillow here lol. I need it, for all these reasons ai feel like it could help me a lot. It takes me a while every-night just to get too comfortable, with this U pillows it could be so beneficial and make it so much easier to sleep! Needless to say, I might have EDS and life is difficult. Any of these pillows you can recommend or link? I will check on Amaz but I must have one, looks well comfy😊 Thanks for the informative video.
You’re a hero! Thanks for talking about the hyoid bone. I’ve had some slippiness there over the past couple years but didn’t understand it fully. I love being able to be specific with my doctor about my symptoms.
This video is wonderful; loved your article too. You’re helping so many people. 🙏🏻
I wanted to extend a thank you for the best sleep I've had in years (if not ever). After watching your video I jumped straight in and ordered the pregnancy pillow you showed and OMG that bad boy is a godsend. I've been trying other options for years and never managed anything sustainable or suitable. Your 'what, why & how' approach provided the information I've been craving. Thank you 🤘
Thanks so much 😀 I am super thrilled it’s has been such a help. This video has been really well received, I’m actually planning a part two over the holidays.
I suspect my ribcage hypermobility is twisting while I'm asleep and causing my diaphragm on the right to not function properly. Any suggestions? My serratus anterior on the right is chronically tight and might be pulling the ribs.
it feels so unfair that no doctor has diagnosed me. but i have all the things you are talking about, and you are so educated on it. you know so much. but it’s like not even known about where i am and i’m not getting the right help😭
but i really appreciate you making all these videos. thank you for helping those that are hypermobile i appreciate it so much
im so tired of being sick and tired. i’m in severe pain most days and it’s exhausted and frustrating that the doctors don’t understand what’s going on
Hang in there, it does get better. You’ll start to learn more about your own body, and what it needs, and eventually you get to a point where you can tell the doctors what you need instead of the other way around. Unfortunately, it kind of Has to be that way because people really don’t know a lot about this on average, but you will get there and things will get better. Just don’t give up
@@anabelle672I use this exact same statement.
@@Deadaccount741 finally got my diagnosis’
Great advice and detailed analysis. Retired occupational therapist here, can observe patterns in others. Not so good in analyzing myself, past adjusting position when joints start feeling pull due to laxity. This is so helpful to hear the full-meal deal, and will listen to this several times. Seems that people on the downhill side of 50 would benefit from watching this video, since you cover so many medical/body issues. Well done.
Have HEDS and I've always had problems when it comes to sleep. Have snoring and breading problems when sleeping on the back, have issues with my ribs, hips, arms, shoulders and neck when sleeping on the side and sleep on my stomach *no way*. Have been at the doctor, rehab center, special doctors and no one have been able to help me. But when you described all the stuff with the joints, it all makes sense... I need to get one of those pillows now! Thank you so very much! 💜💙💚Hopefully my back and shoulders will hurt a little bit less 😊
I had major SI joint problems and my right hip subluxates. My PT had me transition to my back. Now I sleep with a pillow under my legs on my back. Recently my ribs have been subluxating and shoulders feel collapsed. Haven’t been able to sleep for 3 days. I have a firm mattress that helps keep my hips in place but can feel all my ribs moving throughout the night and can’t sleep because of it. The only place that seems to help is sleeping on the floor with my ribs to almost keep them stable, but my sacrum is super achey if I’m there for more than an hour. Any tips on what to do or try??? Mattress seems to aggravate my currently unstable ribs because the mattress seems to still be not firm enough as the floor. But sitting up causes my lower back and hips to ache when put into a posterior tilt.
This has literally been my problem. A recent fall messed up my ribs so badly snd they won’t stop slipping out and causing a great deal of pain and affecting my sleep in all positions. I hope you have found some relief :(
I've personally noticed sleeping with a brace of sorts, or creating a brace (pushing the joints in place then wrapping them in place to sort of hold things in place during the night) can help when my body is acting up more. The last time I accidentally slightly dislocated a rib I literally slept with a foam roller bound to that area to sort of hold it in at night. I've slept eith knee braces, shoulder braces, supportive posture correctors to keep things more in place. Bandage stretchy wrap or tape is a go to for me as well. I wonder if there are rib braces safe to sleep in? A way to wrap the ribs in general alignment? In the long run I found strengthening stabilizing muscles - keeping them stronger in general than most people ever have to worry about - helps reduce the amount of subluxation that happens but I also understand that they can only do so much.
You may find this useful Vanessa: ruclips.net/video/RpUwbaPzLyU/видео.html
I swear by sleeping with a knee pillow between my legs to help with hip pain ❤ great video
just ordered a pregnancy pillow. it makes a lot of sense to me before I was even diagnosed as being hyper mobile that I wanted one because it looked like it would make me sleep more comfy but I never got one idk why. anyways fast forward and I have been diagnosed as ADHD, autistic and hyper mobile and I struggle with sleep and anxiety so much. I am seeing my doctor tomorrow to hopefully get a gabapentin prescription to help with the chronic pain aspect of hyper mobility while also helping with the anxiety it gives me. I'm hoping that if I get approved for the prescription that I am able to manage my pain and anxiety better so I can get better quality sleep! for the last few years my sleep duration and quality has gotten worse and worse and I average about 5 hours a night and wake up frequently either very alert or in pain. this video was very helpful and informative, I want to keep educating myself on these issues to better help myself and others who make be struggling with the same things. the only thing I am a bit sad about using my pregnancy pillow is it will be difficult to cuddle with my gf at night ;-; lol
Until my reflux got insane in my 30's, my favorite sleep position was my stomach. Except, I slept with my arms under my legs lol. It took me a long time to learn how to sleep with a pillow, and I still rarely use one.
I'll be 50 next month and I mostly sleep in a ball like a cat. The worst thing about that is simply trapping heat and waking drenched in sweat. I've always run hot in my sleep and it (and reflux) cause me the most problems. Or waking with my wrists in extreme pain because I decided to fold them under my neck.
I hate sleeping and push myself past exhaustion just to avoid it.
If I lie flat for too long, my hips sublux and my knees hyperextend.
I'll look into those pregnancy pillows! Great video.
This video is ridiculously helpful. I am so hypermobile and have been in pain while sleeping the last 4 years. I am ordering a pregnancy pillow. Asap!!! Thank you for this thorough contecnt!
Define pain.. stiffness or muscular pain?
@kar460 stiffness and pinched nerves in my neck and thorasic spine.
Thank you, I feel seen. I think I have experienced all of the problems :/. Rotating much at night; always more or less tired through the day ..
My SI dislocates every single night, plus all the other benefits of fibro and eds and myasthenia Gravis
Thank you so much for this video! About 2 weeks now I've come to realize my hypermobility is the cause of the many issues I am having. I knew for some time I was hypermobile but never connected the dots (I just thought it was very convenient during yoga). But now I know why sleeping on my side hurts my back and shoulders. Thank you so much again for these insights. The last few weeks have been that one puzzle piece after the other falls right into place... you just got yourself a new follower 😊
Ps. I love to sleep on my back. With a small pillow under my knees. I will start looking for a new pillow soon since I think mine is a bit high.
I have always slept on my front due to unstable shoulders. As a child I realised that it was the only position I didn’t feel pain in and could actually relax. Must’ve contributed to my neck issues 😅 After a very bad period of low shoulder stability due to unrehabilitated injury, I have strenghtened my shoulder muscles and now sleeping on the side is 1. possible, 2. comfortable.
I have never heard anyone speak about the things I’ve been trying to figure out for years, and I am so glad to discover your channel. Thank you for putting such detailed information out there, very excited to learn more through your channel!!!! ❤
The tips about shoulder and hip width and related were really helpful. I cannot remember ever having a comfortable bed and I wake a lot and in pain then usually change position. I am need a new bed and am going to take all this info into consideration. I find side is better but i have shoulder issues, i cannot manage to stay on my back. I am tired of being sore and tired. No one I asked could give me helpful info on beds or pillows.
Saw your message and wanted to try to help you. I am sorry you are suffering. I can definitely relate.
I am 50 with a 9/9 Beighton score (still) and found that getting a PURPLE MATTRESS, #4, was a game changer for me!
Maybe it can help you too. Another thing that has helped is taking montelukast (allergy medicine) and Benadryl before bed. Keeps MCAS under control night and into the next day.
⚪️ chronic left shoulder dislocations
⚪️ never ending cervical instability
⚪️ si joint slipping
⬆️ These are my top 3 that used to keep me awake at night. They do not give me as many problems ever since I started sleeping on purple mattress. It’s been 5 years and I am still surprised that I can actually lay on my left side for more than 2 minutes! Previously I was unable to sleep on left side due to left si joint as well as bursitis in left hip. The purple mattress “accepts” my hips, elbows, etc…as I change positions. It is supportive and yet the mattress hugs the areas that sink in (ever so slightly) into mattress.
I pray this message finds you as well as can be…with brighter days ahead (because you got restful sleep at night)!
Please feel free to message me whenever. From zebra to zebra…..we gotta stick together!
((((((Hugs)))))) to you!
Love,
Terra
I can only sleep on my stomach. Side sleeping makes my neck, shoulders and hips sore, and sleeping on my back is really painful. And yes, I too sleep with my face on the edge of the pillow to keep my neck as neutral as possible.
I'm a depends on what's going on at the time type person for sleep but best sleep is in a recliner because it's back but not flat either and legs are a little up which helps me with not being completely flat with this and POTS.
On my back with a neck brace is the only thing that works for me. Also solo sleeping in my own room (my chihuahua is allowed but no partner). Or I won’t sleep.
For some reason I CANNOT fall asleep unless I have tummy time. It sucks. I know it’s a terrible position to sleep in and it contributes to my neck pain, but I don’t know what else to do.
"Tummy time"? What position is that? Sorry if im being dense!
@@MarysiaKurowski sleeping on the stomach I think
Really helpful video! A lot of great advice and info. I’ve been having a lot of neck issues and tingling down my arm/hand and a lot makes sense now. I’ll be getting one of those pillows to try asap 👍
I think I switch back and forth between side and back sleeping. My hips like to sleep froggy on my back but my knees like the freedom of movement that side sleeping allows (they m fucking hurt if they stay in any position for too long).
Also,
Hypermobility and EDS are very common within the autistic and Neurodiverse community. Obvs everyone's sensory experiences are different, but I feel like, at least this autistic, would enjoy weighted-blanket style cuddliness of that pillow.
I have all the symptoms regarding sleep issues with EDS, but i am not hypermobile, maybe i dont understand what this disease is? can anyone help ?
I have had this sleep issue for over 20 years now
There’s 20 different subtypes of EDS 🩷 you don’t have to be hypermobile. I could be wrong but I would look it up. Best of luck 🤍
Since I was young, I called it the falling apart bones disease. It's a connective tissue disease, lack of collagen. This is brief
I always sleep in a prone position, basically like a mid-army crawl, or in the typical chalk-outline shape that you most often see on TV. And I switch back and forth all night from orienting my weight from left to right, alternating which knee is bent and which is straight. This is necessary because the straight leg always falls asleep fairly quickly. I have a lot of co-morbidities, including narcolepsy, which, in addition to excessive daytime sleepiness, also causes nighttime insomnia. I'm also extremely pear-shaped. My husband prefers a sturdier mattress, so I added a down-alternative mattress topper, and also sleep with 2-3 down-alt pillows. I usually don't put any pillow under my head. I more often line 2 of my pillows parallel to one another, and use them to give more attention to the support of my hips, depending on which leg is raised, while also having the opportunity to hug the pilliows with the bent arm, and stretching the straight/downward arm underneath the pillow, so the pillow is between my arm and my body, which helps my shoulders, as well as circulation to my hands (which also fall asleep). I should also mention that I have polyneuropathy as the result of a chronic, undressed spinal injury. It's fixed now, but the nerve damage is irreversible. Whenever I feel it's necessary, I will sometimes place the third pillow perpendicular to the others, at the bottom of those that are positioned lengthwise, which provides additional support for my hips and pelvis.
I wake up with my knees, mainly the right one, unable to move to a straight position. Takes me almost fifteen very painful minutes. Then it pops out later that say. I’m going to try a pregnancy pillow!
I know this was done over a year ago, but I was wondering if you ever did do a follow up part 2? I can't seem to locate it (direct me if it's there & I missed it?) You've done the best job I've seen so far with this topic, but I'm still curious about a few things you didn't cover. What about various types of contoured pillows? Any advantages to them? What if you need to move from your back or to your right side from the left side with that big pillow? (I can't sleep all night on one side or on my back, partially due to breast cancer surgery/radiation treatments & lymphedema.) And also, what about sleeping at an angle? With either a wedge pillow or the whole bed tilted? That can really help with GERD and sometimes sleep apnea/sinus issues (got both of those too), but how would it work with that pillow? What would be the points of stress/pressure trying to sleep on wedges or at an angle? How do you know your spine is in "neutral" when you don't know what that's supposed to feel like and you're testing things out? It's not like your PT person is going to come watch you roll around in bed to help you with that aspect!
Great info, but I have an off-topic question... dude, how big is your bed?? Is that an Alaskan king?
I had to come back after a couple weeks to thank you. I was unable to sleep for months after a work injury triggered TOS. My hands would be so painfully numb it would wake me up. With all these tips and tools I have been able to fix that and I’m able to get a full 8 hours again. THANK YOU!!!
Hello Mr Fibro guy, I have hypermobile ankles. I have to put the blankets between my legs and ankles to avoid the compression if my "upper" ankles is not supported I wake up with ankles pain. What would recommend?
I'd like to commend you on this aaamazing and important video!! Really well thought out. Excellent work 🤠
I have GERD and sleeping on my right where stomach is in higher position is terrible. Left and back - kind of ok. Front, hips in so much pain on waking. I have type 3
It seems like you've been watching me sleep. Creepy. Helpful, but creepy.
Thank you for this. I learned a lot that I didn't know as a hypermobile EDS person.
The jaw can be affected by sleeping positions also. Not sure how to solve issues around the jaw. Could it be helped with a proper pillow?
Switching to a Soft foam mattress and using lots of props helped immensely
I do the pillow between the legs. But i have no problem. Or if i sleep on my side and the knee is up. The pillow is under my knee. But yep it does get thrown out
#1: Tight Nissen fundoplication is a lifesaver.
#2: I use 5 comforters to shape however I like.
#3: Humidifier and large air purifier are a must for me.
i don’t even have sleeping problems (except the one time i slept with my shoulder out of place and then it was painful for like 2 weeks lmao) but i wanna sleep and not like worry about the fact that my body isn’t in place while i sleep
I am definitely a “changes positions” sleeper, often multiple times per night until I finally go understand and then I’m down for the count. I’ve struggled a lot with sleep and hypermobility, but I have sort of figured out the combination of support pillows and angles that works for me. I tend to have three rectangular pillows of various size and firmness that I may shuffle around for support in different places depending on if I’m on my side or back, creating a ramp to keep the gerd at bay, or a channel for my shoulder while on my side. But I also have found that a snap-on neck pillow to support my neck is crucial, and someone gave me this little almost hourglass-shaped pillow which sits snugly between my thighs and doesn’t move - this has been a game changer.
I haven’t been able to get one of those pregnancy pillows to try yet, it is something I have considered, but now after watching this video I’m even more interested. I’ve sort of been simulating one, I’m wondering if it would be able to provide the specific neck support I need.
Finally got through this, glad I did, thank you for the demonstration. I had heard of pregnancy pillows but didn't quite know what to picture. This seems like it would fix the problem of me having 3-5 pillows to be adjusting all the time.
I have hyper mobility and the only way I been able to sleep my entire life is on my stomach. Even as a baby my parents would try to make me sleep on my back. I would inevitably flip myself to my stomach.
As a Zebra who loves side sleeping, it depends on whats bad that night. I can have my hips or shoulders sublux or fully dislocate, i have a horrible stomach so laying down causes vomiting sometimes. Plus neck and back issues. Oh and slipping ribs that if you accidently roll onto youll stop breathing its too painful. Neuropathy makes it hard when your nerves catch fire and start twitching. Also, neurodivergence causes the brain to kick on andmake sleep a forgotten idea. Sleep feels impossible most of the time. I used to take hard sleep drugs to knock me out than deal with the consequences of how i end up sleeping in the am. Now i just deal with lack of sleep :( lol. We appreciate these tips luv!
Oh, and of course blood pooling from the dysautonomia, can't forget that lol
I am super excited to have found this video! Can’t wait to watch the rest of your videos.
Hopefully I can find a position to sleep in comfortably when my pillow arrives.
I flip side to side all night long trying to get comfortable. I currently sleep with a pillow between my knees and one under my arm to keep my shoulders more comfortable…still not comfortable.
SI Joint and shoulder instability issues.
Thanks 🙏
I have hEDS and experience most of what you talked about. I never realized some of this was happening, i.e. my hyoid bone slipping. It's good to put a name, so to speak, to it. Where can I find that pillow?
What kind of pillow is the big gray one? A long pregnancy one? So many helpful tips!!
Yes
Why wouldn't you put the pillow between your ankles as well? Wouldn't it be easier on the knees?
is it okay to sleep on my back without a pillow at all? every position hurts except that one...but it does start making my body ache after a couple of days of doing it. I've also read that you really shouldn't but i can never find any reasons as to why it's not good
Im 35 and i knew my body was different but I never knew it’s a condition until few days ago. Just a simple terminology helped me to find such a good and helpful content, like this! I sleep with 3 different pillows and I’m very picky about the mattress, but I’ll definitely try the pregnancy pillow now. And check all of your videos ofc😊 thank you!
Excellent information and explanation as to why certain positions cause pain during the night. I use a pregnancy pillow also but mine is shaped like an upside down U - that way I can easily roll over when needed during the night without having to take the pillow with me.
I find the pregnancy pillow strains my neck :(
Very interesting video. I'm thinking of trying one of those pillows, does it need to be S shaped or would a flexible U shape do the same?
Love these validations.. cardiac issues sleep in left.. yesssss
Thank you so much for this -- you've described my experience perfectly! Question: What size *IS* that bed!? Is it 2 queens put together?
California king B)
You’re a very eloquent and knowledgable presenter 😊
Need a soft mattress I have wide hips… hard mattress I wake up and can barley move
I Front sleep with CPAP machine so can have my face down a bit more. I have 2 thin pillow and so i can have my head in a better position, i kinda cuddle one of the pillows.
We also have a water bed which molds to your body shape. It's so good.
Shoulders are a major issue for me. I've also go a very large chest.
I’m 23 and struggling, thanks so much mate
I'm looking forward to a NO PAIN morning!
RUclips showed me this finally when i needed it, THANK YOU. I finally can talk to my doctor with more info about why my arm is messed up.
The name of the pillow was left out the description box? Please help 😂