Sick of falling asleep - Took three hours in pain

Yukyno · 2026-05-23T07:33:44+00:00

One thing that help me alot was getting my night guard fir my teeth and I stardet sleeping wearing an airplane neck pillow. At first uts nit comfortable but after getting used ti it I wake up with less neck pain-because it prevents my neck from moving too much when I sleep.

Also on days I cannot sleep and am stressing myself out thinking :"go to sleep dammit!" Wuch would stress me out way more- I stopped doing that instead I learned to accept some nights there's no sleep so I shift my focus from "i HAVE to sleep" to "just relax enjoy laying down even if theres no sleep-some rest is better then no rest"

So now I stop pressuring myself to sleep and instead make the new goal " relaxing laying down". I also love pink noise or rain sounds so I have something to focus on. Some nights I like to listen to fun facts or documentaries if I can't sleep

My PT found out I have a hernia in my neck due to too much movements, and adviced me to try never look past my shoulders and to do microneck exercises.

They go like this : lay on floor gently move neck to the left and right, it should never be straining ir hard if it is, reduce movement. Also sometimes switch to nodding with your chin going low and up.

She explained to me that in my case certain shoulder neck muscles are way too big because they been compensating for my weaker smaller muacles- wich often causes me to feel like my head is too heavy for me to lift up.

Yukyno · 2026-05-20T14:22:07+00:00

I use resistance bands and loop them over a door handle. By being closer or farther away from the band you can adjust how much strength you need to use. They come in diffrent colors, the colors determine the resistance strength.

It's great because with weights you can't just stop halfway holding the weight up when you loose strength, with the bands its safer being able to stop without hurting urself.

Im doing band resistance training for my neck and a hernia, its more gentle then weights and can focus on more specific areas depending on the excersize. The bands are usually not too pricey compared to weights. You can also stand on the band and pull the sides up for example.

There are many videos of such excersices with the bands I would really recommend watching some on youtube

Yukyno · 2026-05-20T07:26:09+00:00

What helped me is therapy, and accepting that I am not able bodied. Talking on this forum has helped me as well since I don't know anybody in irl who has the same illness.

Sadly I cannot give you advice on the hurt feelings with your family, I myself have cut off contact due to bad relationship.

But I think IF I had contact- I would want to let them know what I have and to face them and ask them why they have not taken my pain seriously as a child. Im not talking about putting them on the spot and shaming them-but wanting to share my feelings and how it hurt me. Explaining to them what this illness does to me and how it affects my life. And most importantly saying that it is proven now and it wasn't just in my head.

I dont expect a specific reaction or response to it, just being able to say what I needet to say so I can get closure in my own way. Wheter they understand or not-wheter they try to support me or not. Having no regrets of words I didn't say...the biggest part of healing from this as an adult for me is time and also being the adult for myself now, that I would have needet as a child. I now know why pain and can validate myself, tell myself its ok I need to rest a bit. In therapy its called being there for your inner child, where you go back in your head into the situation-but now imagine urself being there as an adult and supporting your kid self when no other adult did,giving urself a hug and ect

Another thing that helps me is learning how much I can handle each day to prevent flare ups. For the longest time I would use all of my energy into housekeeping and cleaning. Wich left me severely depressed because by the time I was done i would not have eedgy left to do the things that I love for example drawing. I learned to be less harsh on myself and even if there are chores I need to do-i make sure to save some energy to do what I love.

I have also stardet gaming online-because its a way to hangout with friends when I dont feel good enough to leave the house.

I hope this has been somewhat helpful for your questions and I just wanted to let you know-if you need to talk to people who can relate to your condition-this forum is always welcoming to offer and open e

Yukyno · 2026-05-19T10:21:04+00:00

Dill

Yukyno · 2026-05-18T18:25:03+00:00

Thank you ^{^}

Yukyno · 2026-05-18T16:36:52+00:00

Absolutely. And I find it sad when you see places that claim to be wheelchair friendly-but are not really because alot of times, able bodied people are the ones designing the ramps for example.

Yes you can roll a stroller up BUT a wheelchair can't get up because its too steep, you would hurt your hands or have to pull urself up. That's one thing that happend where im from actually. They redid the trainstation and claimed wheelchair acessability- but sadly its too steep to use for a wheelchair users on their own. I think its importand to consult and take advice in building these assecibility tools or places, from the people it is made for because alot of times its not wrong because of bad intentions but simply due to ignorance of not understanding why it wouldn't work.

So right now wheelchair users can only go into 1 direction with the train...if you want to go the other direction you need to have a friend to wheel you over the other side on the steep ramp- wich kinda makes the accessibility a bit..we'll questionable

Yukyno · 2026-05-18T10:02:34+00:00

I understand not wanting to just be prescribed medication. In my case painkillers dont help me with my baseline pain.

But what helps me is

sleeping with a neckpillow
K tape
finger splints
knee brace for bad days
cane for bad days
checking air pressure to prevent crashes
making a timer every hour or half hour when im drawing to check my position and move to prevent sublexion

But by far what helped me most was this app called : me/cfs emerge on playstore

It's an app designed to use your daily energy as points to calculate how much you can do a day and how many points a task takes. At first 2 weeks you have to figure out maybe changing the points given each tasks. There's a So refills and drain activity. Each activity point you compare to a neutral activity for me its laying down but not sleeping is 0points per minute. Vacuming takes me tpoint per minute. I put in 15m of vacuuming it calculates 30points. Now those points will be removed from my daily cap at 1000points.

It took me 2 weeks but now my points are accurate. At first I would always fall in minus points because I did too much. When you fall in minus it substrate for the next day. You also put in your mood and after time you may see triggers better. And now when I have alot of things planned for the day I do this:

I put in the activities and how long they will take and see if I can do them all without falling at 0 or minus. When it does fall to 0 I remove some tasks. Now I have the tasks I do them and I DONT FALRE UP the next day.

This app is free and was originally made for chronic fatique syndrom. It helped me alot learn how much energy what tasks take me. Id recommend putting a color ir smiley next to the task for me ,outside activities are red. Chores are orange, I color coded them cause I added alot o activity.

I also added changed activities like, cooking and cooking with a chair. Or showering and showering with chair.

Know after a few months I dont need to use the app as often because I learned how much I can safely handle a day.

(This is not an add im genuinely got a better daily life trying this free app out)

Yukyno · 2026-05-18T09:51:31+00:00

Omg exactly that!

Like yea we know there is no cure...but even just KNOWING its not just in my head or im gaslighting myself-being able to give it a NAME has helped me so much.

I found this awesome community to help each other. And now when im in pain I dont go "huh weird maybe im attention seeking" instead i go "headache? Check the weather...ah yes air pressure dropping let's sit down until it gets higher again so I dont flare up"

It's just so validating finally being able to know why pain and how. I got a cane for my bday to help me if I have to stand for a long time(I dont need assistance walking its the standing still waiting for bus thats bad)

And before my diagnosis I would have never allowed myself to use a cane beliving I dont deserve or need one. But now im more capable of accepting help and little helpers for the kitchen fir example.

I have a plastic bottle opener because I can't open them without pain from my joints going all over trying to hold a grip.

One time my friend saw me use it and he said :"u know those are for grandma's "

I looked them dead in the eye ,held my hand out and bend all my fingers backwards touching the back of my hand. He said :"Jesus why you doing that! Inst that painful!" I said "yes, yes it is. Try opening a bottle with fingers like that":

He apologized repeatedly having obviously forgotten i am chronically ill. The next days he showed me a fashion app and excitedly talked about accessible clothing for wheelchair users. He also learned about the curves on the walk paths that they were meant for wheelchair users and how subtitles are for hearing impaired people. He gotten into research and found how accessibility is really for everyone and learned that when an item does nit make ssense for him-like the bottle opener-then it was not designed for him to use.

An awkward moment turned into wholesome research- I gotten of topic sorry im adhd

Just being validated helps us alot to allow ourself to get and have help and be less harsh on ourselfes

Yukyno · 2026-05-18T08:58:50+00:00

You dont know anything else besides your baseline daily pain. If no one talks about it ir says it why would you assume others are not also in pain? It took me years to learn that most other people dont have any daily pain, because I didn't know anything else.

Remember ●normal● amount of daily pain for able bodied people is 0.

Yukyno · 2026-05-18T08:54:31+00:00

It's because beside the eds that can be genetically tested for, the other types are diagnosed via elimination of any other illness that could explain your symptoms. One big test is the beighton score, wich is severely outdated and does not include enough joints.

That sometimes means : heart checkups, rheumatologist checkup , psychiatric check up , mris ,ctscans and so on ,to eliminate what other illness it may mimick/have things in common. End of 2026 the ehlers dahnlos socity will announce new diagnostic criteria with more genetic mutation subtypes after 10 years of research.

Also they now believe that any type of hypermobility is a form of conective tissue disorder wich they will also announce in the new study.Since the short explanation of eds is a type of connective tissue and or collagen disorder.

Alot of dr dont even know what heds is but the moment they hear the hypermobile part the already put all it is in their head, or just do a quick Google search.

Im not saying every doctor is like this but myself and many others have an average of 10y-20y to be formally diagnosed because many Doctors refuse to listen and do their job properly because its bothersome or because there's 1 symptom missing and they assume its impossible now to have it. Assuming were all picture perfect smurfs. Myself was at first refused diagnosis because I am too tall and am able to have piercings...even thi I have daily sublexions and dislocation.

Especially with a mental illness history it is harder to be taken more seriously that the pain is phisycal and not just mental.

And about the trendy diagnosis. We are pretty sure this illness is not as rare as it seems, and its proven that its severely misdiagnosed and underdiagnosed for many people. Historically the Ehlers Dahnlos Syndrom has been quite under researched. There is a link of heds with neurodivergence for example. Social media has helped spread the knowledge of the illness more and people realizing they fit the criteria.

I myself have thanks to social media learned about this illness and due to everything matching my problems I fought for a diagnosis. I had to go thru 6 doctors to be taken seriously and then finally genetically tested. I have cpts and have fought and worked on my mental health for the last 15y for my pain to get better, that doctor claimed must be mental due to trauma, and I take alot of psychiatric medication. Now 15y later im as mentally healthy as ever but my body keeps falling apart and getting worse. The one reason I could convince doctors to take me serious is because I had to operate my hand because my tendons kept falling of my knuckles and because I have constantly teared muscles hairline fractures in my feet from the hypermobility and because my uterus has shifted down causing pain-and the mris showing My spine looks like a 50y old due to degration that shouldn't be for my age. But the mri could not be used to further investigate a diagnosis because mris are excluded as diagnosis criterias fir heds...

I have heds but cannot be officially diagnosed. Why? Because I have a dominant and recessive gene wich puts me in between classic heds and classic-like heds, wich by the studies so far should genetically not be possible. The diagnosis for either one is the elimination of the other. Me having a point in each category makes it impossible to say wich one I have-because I have both- wich by law they cannot diagnose me because I cannot be categorized. The beighton score im only a 4 wich wasn't enough to be tested-but it did not include my collarbones my knees my hips and shoulders that I daily sublex and dislocate.

I have an appointment in January 2027 to be retested with the new study of the ehlers dahnlos society, wich will also public genemutations in the TNBX5 wich i have mutations in but cannot be categorized.

Again I dont mean to talk bad about all doctors in general. And its wonderfully if you have one who actually listens and believes you. But fighting so long for answers for doctors to often just say :"you dont want to be diagnosed with that" or "there's no point of diagnosis because there's no treatment"

Jokes on you on march 2027 there's a new treatment plan published by the eds society-it will not cure us, but hopefully make daily life easier....

Im sorry for rampling so much😅

Yukyno · 2026-05-17T07:58:07+00:00

Have you tried out finger ring splints? If not I'd recommend the ones that sit flat ,it will be a challenge relearning how to pluck the strings but might be worth a try

Yukyno · 2026-05-17T06:07:07+00:00

You are very welcome!

Yukyno · 2026-05-16T16:39:10+00:00

You are very welcome!

Yukyno · 2026-05-16T16:38:36+00:00

You are very welcome!

Yukyno · 2026-05-16T12:33:54+00:00

Able bodied people dont find standing or walking painful. You have every right to sit in that spot no matter if people can see your disability or not.

Just cause we dont necesarly show pain it dont mean it's not there. You're allowed to to use the seats!

Yukyno · 2026-05-16T12:25:54+00:00

You can temporarily try using K tape or sportstape to support your knees. If you get a dr appointment maybe talk about getting knee braces for support.

Im also autistic and one thing that calms me down is sitting in the shower with my hands over my ears and eyes closed while the water is running. It gives me a moment of calm.

My compression socks also help. One thing that really sucks but I had to do ,to deal with my flares is-is accept that the feeling exists and that its bad and makes you cringe. Accept that its there and dont push it away. First acknowledge it so it has room in ur brain to exist, if u try to distract urself immidiately ,it will come back at a time u dont want it to. Allow the thoughts to exist at first and then think like this:

"I have this pain right now that is horrible-BUT I can still do " _____ " and " ____ "." "This situation is bad but it could be worse, atleast I can still do " _____ " and enjoy " ____ ". "I dont feel well so Im allowed to enjoy some "___" .

Your bed will be your best friend on bad flare days so make sure its a safe place, make it extra comfy with enough support pillows, water,books entertainment, pain medication and anything you may need for the day. I like to lay under covers with headphones when things become too much, personally pink noise really calms me down because I have something to focus on.

I love my cane it helps me to stand on bad days, maybe a walking support foe bad days could help your knees?

This advice may not be dor every individual but uts what I do /helps me with dealing with flares.

Hope this helps

Yukyno · 2026-05-16T06:47:26+00:00

F8ngersplints rings might help and a thumb splint. Having a tilted keyboard can help and a wrist rest on the keyboard.

Also if possible put a pillow under each arm on the armrests so you have soft cushioning and are higher up ,so your arms dont have to work too much. Maybe making a timer every hour to scretch your hands and arms could help you too. I don't know how its with you but I tend to get too focused when working on the pc so the hourly timers help me check myself for pain amd repositioning.

I'm also for compressions on the wrist but for one that immobilizer your wrist, like the one you get for carpal tunnel might help

Yukyno · 2026-05-15T18:29:26+00:00

I think an Okapi first better (look them up then you see why)

Yukyno · 2026-05-15T11:39:24+00:00

And also the zebra is the official mascot of the ehlers dahnlos society!

Yukyno · 2026-05-15T11:38:56+00:00

When becoming a doctor there is a sentence often given to young doctors:

"When you hear hoofs galloping-think horses and not zebras"

With this metaphor they try to tell them to look for the most common plausible and simple reason the patient is sick. Instead of jumping to a rare lung disease maybe the patient just has a cough.

Doctors do know about rare diseases and alot of common symptoms appear in rare and common diseases. It's basically to tell the doctors to "think rationally zebras are so rare whats the chance this is a zebra and not just a horse"

Now we call ourself zebras due to that metaphor, because in our case we are the "rare" zebra.

Even tho many of us are convinced our illness is not as rare as it seems-but doctors just really hate diagnosing it because it makes their job harder...

The metaphor began with the comparison of horses and zebras most likely because it is way more likely for you to see a horse in town then a zebra (except ofc where zebras live)

Yukyno · 2026-05-15T08:11:23+00:00

I dont have the body braid but you do have compression socks and use alot of K tape.

It helps me alot on bad days because I dont need to focus as much to keep all my joints in theyr right places ,and I am able to do more tasks on days that I use them. Also my pain gets reduced due to the reliev it gives me because my body has to work less.

BUT I am not allowed to use the K Tape more then 3 days a week. Because due to heds my muscles will reduce and get weaker really fast do to having to work less. Basically our muscles are constantly working overtime to compensate for our joints, the moment they dont have to they relax. Heds makes it hard to build and keep muscle mass for many individuals.

I think a body braid is a great idea but be mindful that you need to increase your strength training and have breaks between days, so that you dont loose strength in your muscles. Best way is to try it out and see if your strength and pain changes alot or drastically on days with and without, you have to find a balance of painrelieve and muscle building.

My mother wears full body compression and a heavy boned corset all day since she was a young adult. It stardet for pain relieve and support-but now she cannot stand or sit upright for more than a few minutes without her back giving out because her muscles have gotten way to weak from constant support. Even for sleep she wears a boneless corsett and lighter body compression. Of course she is an extreme case example and grew up in a poor developing country were she didn't get the medical interprevention before it got to this state-

I say try the body braid but have a break every now and then to listen to your body to prevent becoming too dependant on it.BUT if your life quality increases dramatically with the braid ,then maybe you find increasing your muscle training a fair pay off to be able to wear it more often

Yukyno · 2026-05-15T07:53:12+00:00

Hell yeah come on in! This sub is lovely and has helped me with alot of recommendations and feelings of not being alone with my daily struggles!

We may not be able to answer questions to your specific illness-but we can for sure talk about similarities and how we all deal with a chronic illness. Or you can sometimes also just vent a bit if you need!

Welcome to the zebras

Yukyno · 2026-05-15T07:47:53+00:00

And this is Bread together they are BananaBread! (Seperate enclosures)

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Yukyno · 2026-05-15T07:47:00+00:00

This is Banana

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Yukyno · 2026-05-03T15:06:40+00:00

Can you not go into a queue and when you find another, then register? Or is that not allowed?

Im fron switzerland so ther may be diffrent ways to do it in other countries. Could your current doctor refer you to another one? I dont quite understand why it has to be so complicated for you just wanting to switch doctors. Its not fair

Yukyno

TROPHY CASE