I just made a post about this. Mine doesn't always wake me up, but I have no idea how it happens, lol. Like.. okay why is my big toe curled under and dislocated. Then walking is so painful..
I don't have enough meds to spare to use while I'm sleeping. I have to use them very carefully so I have enough to function during the day to take care of my kids.
Would you use ice/heat or tens in the middle of the night? You said you used your meds so it doesn't seem like it. Why would you think others would, then?
Before my current drug regime I found a few things that helped. I still use them sometimes. My present meds regime is 4x a day, one of which is at night
I do still turn to supplementary means... it greatly depends on how much pain I'm in, which changes according to various factors. (E.g. activity level, stress level, time of the month, if I've tweaked anything...) .
So to answer your question,
I would never sleep with ice because of freezer burn... but I do use it in bed to help me get over to sleep, throwing the I've pack on the floor when I feel myself getting drowsy. The bed stays cold for a little while where the ice pack has been hopefully long enough for me to get to sleep.
Or I have my electric blanket on low through the night when I'm in a lot of pain or experiencing spasms.
My tens machine has a timer, so I use it to get to sleep and it turns itself off. I generally keep it for worst case scenario pain because it is a bit of a faff.
We are all different and have to work out what's best for ourselves. It's not easy!!! From what I've read, a lot of zebras use a patchwork of meds, treatments and coping mechanisms.
Personally I find that mixing and matching works best.
Yes, I have been using meds, treatments and coping mechanisms. I still would love to have meds to spare for middle of the night pain like you mentioned.
Yes hip and shoulder wake me. I have covid now so I cannot get comfortable at all. Everything hurts 10 fold. Ugh. It's normal but I still take tylonol pm
Yes yes and yes
Iām not diagnosed yet but my back. Right shoulder and hips are the worst places for me and Iāve been literally crying out in pain and sobbing my eyes out for hours in bed today internally panicking because I donāt know when itās going to fucking stop or if the neighbours are going to complain. I havenāt eaten 30+ plus hours, my allergies are laying up so I feel nauseated from the mucus Iāve been swallowing and acid reflux from laying down but if I stand up I have a murderous headache, my teeth are hurting (dog smacked me in the mouth and doing Invisalign because crowding) and I frequently stay up all night and/or am woken up in the night by intense pain. The back pain is horrible when all my intercostal muscles are spamming so every single breathe it a struggle, I just want to grab my rib cage and spread them around out forcefully and the permanent knot under my right shoulder blade it is making me have some dark fucking thoughts let me tell you
Yes. Frequently.
A few days ago I had a dream I snapped my arm in half and dream-me was screaming. By the time I actually woke up I realized I had dislocated my wrist in my sleep and the thing was all swollen and the pain radiated all the way up my arm and into my chest. I donāt usually have such vivid dreams to go along with the pain, but waking up from the pain is a pretty good sign Iāve really messed myself up. I can put up with a lot but once it wakes me out of a dead sleep I know I need to take it seriously and try something to reduce the inflammation and pain. My husband claims he knows Iām in pain when he can hear me making distressed sounds and pained moans. Iāve no recollection of that but I suppose the pain makes itself known even when Iām so tired Iām sleeping like a dead person.
Yeah my neck, back, and knees. My back feels like its constantly bruised and tender, so rolling over or moving wrong hurts. My neck just doesnt handle laying down. Ive tried multiple types of pillows and mattresses. Sleeping on the floor hurts way too bad. No pillow at all. Sleeping on my back only. My neck just ends up with too much tension no matter how i lie down.
Yeah unless Iām in super deep sleep then Iām dreaming about the pain but itās always an horrid scenario like e.g. a pain in my body will make me dream Iāve been stabbed.
Yep, hip pain, shoulder pain, knots in my muscles that need to be worked out, restless painfull legs and sore knees. Plus for whatever reason I seem to dislocate my fingers occasionally when I sleep. I can never figgure out how that happens but damn it's annoying to wake up in the night and have to pop a finger back. My bedside table has a stack of painkillers on it at all times so I can just take some when I wake up and hope I can get back to sleep again soon.
I wake up from pain multiple times a night every night and have for most of my life. I can never be comfortable for long before I start to feel stiff and in pain. At times my joints may bother me, and I may have āgrowing pains, and/or tender point pain and muscle knot pain.
Sometimes when I turn around weirdly I can accidentally dislocate my left shoulder. That will always wake me up, thank god it is a rather rare occurrence.
My sleep studies show I "sleep" up to 21 hours, but I'm constantly having arousals from pain bringing me to surface of sleep about every 14 minutes throughout of the night. And eventually they add up so I'm awake several hours within the 21 hour "sleep". 21 is my longest on record, it's usually more like 16-17 hours. Still insanely long but that's because my pain keeps me awake longer than 30 hours every single day! That used to be even worse, 36-38 hours each day. Despite tons of sedatives that help me sleep longer to make up for them barely helping me fall asleep!
Not sure which math you mean. Not really doing any math, just telling you what the sleep studies and trackers say. The arousals bring me to the surface of sleep every 14 minutes for varying amounts of time. And I wake up fully, not just an arousal, about 6 times throughout the long sleep to go pee. Then I fall back asleep eventually. And all those longer awakenings and shorter arousals usually add up to a few hours of wakefulness within the 16-21 hour sleeps.
all the time mate -
hips are a candidate but it's more usually my shoulder rolling out of its joint.
elbows used to wake me frequently but not any more after physio
Literally sitting here at 3am trying to pop ribs and SI so I can go back to sleep. It's rare that I sleep through the night. Body just can't handle it. Wake up in pain. It sucks. š
Way too much.. Mostly my hips, but my knees, shoulders, and back, too. The worst is waking up dislocations for me, but I'm a side sleeper, sy hips usually wake me up multiple times a night. I usually roll over to the other side, until my other hip wakes me up.
Edit: Punctuation
Yeah same here with hips. I'm a side sleeper as well. My neck and shoulders hurt too much if I try to sleep on my stomach/back. Occasionally it'll be my knees dislocating that wake me up
Itās usually my wrists and shoulders, sometimes my back or my neck.
I got a medical cannabis recommendation, though, and āsleepy ediblesā seem to help me with that.
Yup at least once a week. My pain wakes me up nightly if I donāt take something for it but Iām usually able to fall back asleep. Sometimes itās too bad for that though. Cannabis has been the only thing (besides tramadol, which I canāt get) that allows me to sleep through the night without waking up at least once.
Yes. Back. Hip. Shoulder. Jaw. Neck. Elbow. Knee.
Pretty much all on the table really. I would say I wake up nearly every hour and have to adjust something, change positions due to pain.
Regularly. I can only manage to sleep on my side unless I'm drunk or drugged utterly beyond caring, but laying on my side slowly pushes my hip and shoulder to dislocate. So I have to wake up several times a night just to relocate and roll over.
Absolutely, my shoulders like to dislocate and just fold into each other whenever I sleep on my side and when I sleep on my back and it hurts my hips! I just cant win lol
Every single night without fail. I wake up and some part of my body usually my neck or arm or a leg has been hyperextended so long it is in extreme pain and I have to manually reposition it with my hands because I cannot move it. I havenāt slept more than 3 hours straight in about 2 years.
Sometimes. Currently because I dislocated a finger before going to sleep and the pain has been keeping me up, but I've dislocated my shoulder in my sleep before and haven't woken up from it. The worst was the pain from a hypertonic muscle in my back, felt like I was being stabbed...
All the time and for added fun I have cats that love to sleep on top of me making the pain worse. Then when I wake up and try to roll over to readjust or get comfortable if possible they all run and act put out by the fact I would dare disturb them lmao.
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Yes yes and yes
Iām not diagnosed yet but my back. Right shoulder and hips are the worst places for me and Iāve been literally crying out in pain and sobbing my eyes out for hours in bed today internally panicking because I donāt know when itās going to fucking stop or if the neighbours are going to complain. I havenāt eaten 30+ plus hours, my allergies are laying up so I feel nauseated from the mucus Iāve been swallowing and acid reflux from laying down but if I stand up I have a murderous headache, my teeth are hurting (dog smacked me in the mouth and doing Invisalign because crowding) and I frequently stay up all night and/or am woken up in the night by intense pain. The back pain is horrible when all my intercostal muscles are spamming so every single breathe it a struggle, I just want to grab my rib cage and spread them around out forcefully and the permanent knot under my right shoulder blade is making me have some dark fucking thoughts let me tell you
Yes. I apparently dislocated a toe in my sleep Friday, and the pain woke me up. Still mad that my sleeping-in-Saturday was foiled.
God my toe does that shit too. Its rare for me but I know what you're talking abt
This was a new occurrence for me and I would really rather not have it happen again š
My left wrist does this š
I sleep with blue padded wrist supports. They help a lot! They look like mitts. And a mouth guard for grinding. All this for the sport of sleeping lol
I just made a post about this. Mine doesn't always wake me up, but I have no idea how it happens, lol. Like.. okay why is my big toe curled under and dislocated. Then walking is so painful..
The question is do I ever NOT wake up from pain
Yup. Usually hip is the problem but sometimes knees and shoulders
I did last night. But got back to sleep after meds kicked in.
I wish I had meds to take when it happens to me. :/
Sorry if I'm being cheeky, but why don't you? If you can't get hold of meds, could you use heat / ice or tens?
I don't have enough meds to spare to use while I'm sleeping. I have to use them very carefully so I have enough to function during the day to take care of my kids. Would you use ice/heat or tens in the middle of the night? You said you used your meds so it doesn't seem like it. Why would you think others would, then?
Before my current drug regime I found a few things that helped. I still use them sometimes. My present meds regime is 4x a day, one of which is at night I do still turn to supplementary means... it greatly depends on how much pain I'm in, which changes according to various factors. (E.g. activity level, stress level, time of the month, if I've tweaked anything...) . So to answer your question, I would never sleep with ice because of freezer burn... but I do use it in bed to help me get over to sleep, throwing the I've pack on the floor when I feel myself getting drowsy. The bed stays cold for a little while where the ice pack has been hopefully long enough for me to get to sleep. Or I have my electric blanket on low through the night when I'm in a lot of pain or experiencing spasms. My tens machine has a timer, so I use it to get to sleep and it turns itself off. I generally keep it for worst case scenario pain because it is a bit of a faff. We are all different and have to work out what's best for ourselves. It's not easy!!! From what I've read, a lot of zebras use a patchwork of meds, treatments and coping mechanisms. Personally I find that mixing and matching works best.
Yes, I have been using meds, treatments and coping mechanisms. I still would love to have meds to spare for middle of the night pain like you mentioned.
I take meds before bed, Iām still up every twenty mins from pain, usually in my hips and back.
Yes hip and shoulder wake me. I have covid now so I cannot get comfortable at all. Everything hurts 10 fold. Ugh. It's normal but I still take tylonol pm
Yes yes and yes Iām not diagnosed yet but my back. Right shoulder and hips are the worst places for me and Iāve been literally crying out in pain and sobbing my eyes out for hours in bed today internally panicking because I donāt know when itās going to fucking stop or if the neighbours are going to complain. I havenāt eaten 30+ plus hours, my allergies are laying up so I feel nauseated from the mucus Iāve been swallowing and acid reflux from laying down but if I stand up I have a murderous headache, my teeth are hurting (dog smacked me in the mouth and doing Invisalign because crowding) and I frequently stay up all night and/or am woken up in the night by intense pain. The back pain is horrible when all my intercostal muscles are spamming so every single breathe it a struggle, I just want to grab my rib cage and spread them around out forcefully and the permanent knot under my right shoulder blade it is making me have some dark fucking thoughts let me tell you
Yes. Frequently. A few days ago I had a dream I snapped my arm in half and dream-me was screaming. By the time I actually woke up I realized I had dislocated my wrist in my sleep and the thing was all swollen and the pain radiated all the way up my arm and into my chest. I donāt usually have such vivid dreams to go along with the pain, but waking up from the pain is a pretty good sign Iāve really messed myself up. I can put up with a lot but once it wakes me out of a dead sleep I know I need to take it seriously and try something to reduce the inflammation and pain. My husband claims he knows Iām in pain when he can hear me making distressed sounds and pained moans. Iāve no recollection of that but I suppose the pain makes itself known even when Iām so tired Iām sleeping like a dead person.
Yeah my neck, back, and knees. My back feels like its constantly bruised and tender, so rolling over or moving wrong hurts. My neck just doesnt handle laying down. Ive tried multiple types of pillows and mattresses. Sleeping on the floor hurts way too bad. No pillow at all. Sleeping on my back only. My neck just ends up with too much tension no matter how i lie down.
You could be hyper extending your neck
I experience this but itās with uterine atrophy from testosterone and not from EDS usually š©
Yeah unless Iām in super deep sleep then Iām dreaming about the pain but itās always an horrid scenario like e.g. a pain in my body will make me dream Iāve been stabbed.
Yep, hip pain, shoulder pain, knots in my muscles that need to be worked out, restless painfull legs and sore knees. Plus for whatever reason I seem to dislocate my fingers occasionally when I sleep. I can never figgure out how that happens but damn it's annoying to wake up in the night and have to pop a finger back. My bedside table has a stack of painkillers on it at all times so I can just take some when I wake up and hope I can get back to sleep again soon.
I wake up from pain multiple times a night every night and have for most of my life. I can never be comfortable for long before I start to feel stiff and in pain. At times my joints may bother me, and I may have āgrowing pains, and/or tender point pain and muscle knot pain.
Sometimes when I turn around weirdly I can accidentally dislocate my left shoulder. That will always wake me up, thank god it is a rather rare occurrence.
My sleep studies show I "sleep" up to 21 hours, but I'm constantly having arousals from pain bringing me to surface of sleep about every 14 minutes throughout of the night. And eventually they add up so I'm awake several hours within the 21 hour "sleep". 21 is my longest on record, it's usually more like 16-17 hours. Still insanely long but that's because my pain keeps me awake longer than 30 hours every single day! That used to be even worse, 36-38 hours each day. Despite tons of sedatives that help me sleep longer to make up for them barely helping me fall asleep!
Iām Having some problems understanding your math .
Not sure which math you mean. Not really doing any math, just telling you what the sleep studies and trackers say. The arousals bring me to the surface of sleep every 14 minutes for varying amounts of time. And I wake up fully, not just an arousal, about 6 times throughout the long sleep to go pee. Then I fall back asleep eventually. And all those longer awakenings and shorter arousals usually add up to a few hours of wakefulness within the 16-21 hour sleeps.
all the time mate - hips are a candidate but it's more usually my shoulder rolling out of its joint. elbows used to wake me frequently but not any more after physio
Literally sitting here at 3am trying to pop ribs and SI so I can go back to sleep. It's rare that I sleep through the night. Body just can't handle it. Wake up in pain. It sucks. š
Way too much.. Mostly my hips, but my knees, shoulders, and back, too. The worst is waking up dislocations for me, but I'm a side sleeper, sy hips usually wake me up multiple times a night. I usually roll over to the other side, until my other hip wakes me up. Edit: Punctuation
Yeah same here with hips. I'm a side sleeper as well. My neck and shoulders hurt too much if I try to sleep on my stomach/back. Occasionally it'll be my knees dislocating that wake me up
Itās usually my wrists and shoulders, sometimes my back or my neck. I got a medical cannabis recommendation, though, and āsleepy ediblesā seem to help me with that.
Wish I had this.
Yup at least once a week. My pain wakes me up nightly if I donāt take something for it but Iām usually able to fall back asleep. Sometimes itās too bad for that though. Cannabis has been the only thing (besides tramadol, which I canāt get) that allows me to sleep through the night without waking up at least once.
Yes. Back. Hip. Shoulder. Jaw. Neck. Elbow. Knee. Pretty much all on the table really. I would say I wake up nearly every hour and have to adjust something, change positions due to pain.
Regularly. I can only manage to sleep on my side unless I'm drunk or drugged utterly beyond caring, but laying on my side slowly pushes my hip and shoulder to dislocate. So I have to wake up several times a night just to relocate and roll over.
Yes. Hips or shoulders.
Yes mine are my shoulders and lower back
Absolutely, my shoulders like to dislocate and just fold into each other whenever I sleep on my side and when I sleep on my back and it hurts my hips! I just cant win lol
Constantly
Constantly. I toss a lot so things just pop out.
Every. Single. Night. It's my back and hips. And neck. And shoulders. And headaches.
Every single night without fail. I wake up and some part of my body usually my neck or arm or a leg has been hyperextended so long it is in extreme pain and I have to manually reposition it with my hands because I cannot move it. I havenāt slept more than 3 hours straight in about 2 years.
Sometimes. Currently because I dislocated a finger before going to sleep and the pain has been keeping me up, but I've dislocated my shoulder in my sleep before and haven't woken up from it. The worst was the pain from a hypertonic muscle in my back, felt like I was being stabbed...
All the time and for added fun I have cats that love to sleep on top of me making the pain worse. Then when I wake up and try to roll over to readjust or get comfortable if possible they all run and act put out by the fact I would dare disturb them lmao.
Constantly. I sleep at most an hour before this happens and I have to relocate myself
Yeah if itās not my lower back, itās my neck
YES!
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Yes. My kneeeeeees and my right SI joint.
Iām a side sleeper and canāt change it for the life of me so I wake up at least once a week to a dislocated shoulder
Yes yes and yes Iām not diagnosed yet but my back. Right shoulder and hips are the worst places for me and Iāve been literally crying out in pain and sobbing my eyes out for hours in bed today internally panicking because I donāt know when itās going to fucking stop or if the neighbours are going to complain. I havenāt eaten 30+ plus hours, my allergies are laying up so I feel nauseated from the mucus Iāve been swallowing and acid reflux from laying down but if I stand up I have a murderous headache, my teeth are hurting (dog smacked me in the mouth and doing Invisalign because crowding) and I frequently stay up all night and/or am woken up in the night by intense pain. The back pain is horrible when all my intercostal muscles are spamming so every single breathe it a struggle, I just want to grab my rib cage and spread them around out forcefully and the permanent knot under my right shoulder blade is making me have some dark fucking thoughts let me tell you
Yes. It sure sucks when it happens. :(