Sleeping With Chronic Fatigue Syndrome: Our Main Keys
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- Опубліковано 7 лис 2024
- Learn some important tips on how to improve your sleep and overall health and wellbeing.
Sleep is vital in terms of recovery - without sleep our bodies do not repair themselves. Lack of sleep can effect brain function, concentration, brain fog, etc.
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I’m Toby Morrison. As Founding Director of CFS Health and a CFS Specialist, I am eager to share my knowledge and experiences from dealing with Chronic Fatigue Syndrome myself.
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I like a lot of your other vids, but when it comes to sleep issues with CFS I think the problem is deeper than can be fixed with the basic sleep hygiene tips you mention here, so this is a bit of a cupcake video. I do all those things (and have no problem falling asleep), but still without fail wake up at 2-3 in the morning. I think this is many of us. I believe 9-10 hours of sleep is crucial to recovery and while these tips (get some good sunlight in the morning, don't use screens at night, etc.) work for a healthy person, they are not enough for someone with CFS, where there are real physiological problems messing with our circadian rhythms. I believe sleep medication is necessary in order to "overpower" the hypothalamic sleep-center malfunction that comes with CFS.
Josh Elkin agreed! Unfortunately. I was taking one that worked so well. I was sleeping and healing but recent setbacks have me up at night again :/
You might not be getting enough carbs at the right times. This was happening to me but I read about re-setting the circadian rhythm in the book "The Adrenal Re-set diet." The circadian rhythm is partly determined by when you get healthy carbs. I didn't follow all the things in the book... mostly just did their recommendation of 1/4 cup carbs with breakfast, 1/2 cup carbs with lunch and 1 cup carbs with dinner. I stopped waking up at that time of night. It worked the first night for me. I also had to make sure I was eating at roughly the same time every day (I didn't ever get hungry at the time so I would forget meals which would alter my circadian rhythm.)
I also had to stop doing IF. I was doing IF because so many doctors said it helps the healing process. But I think that's only true for when the circadian rhythm is stabilized.
I was extremely sick at the time. Messed up fight or flight...I would get kidney stones when under even the smallest amount of stress... so I had stones every day for years. And extreme fatigue, bedridden 80% of my waking hours.
I am not bedridden any more, and stabilized enough that stones don't happen anymore.
But I will still wake at 3am if I forget my proper carb intake and timing!
@@rjbartun I know this is an older comment, but hoping you can answer my question. When you say "carbs"... are you meaning grains and starchy veggies?? Things like oatmeal, rice, quinoa, sweet potatoes?.... or are you also including things like regular veggies and fruits? I've noticed a huge benefit in my daily health since I began "eating clean" 5 years ago. Unfortunately carbs like grains are big tigger foods for me and don't really fill me up... so I tend to over eat them ... which would then make me feel sluggish and sleepy.... so I don't eat many grain carbs anymore. But I do eat tonnes of veggie and fruit carbs daily. No night time restorative sleep continues to be my main problem. Thank you for your response. 😊
Melatonin really helps me sleep better. Also having a nice cool room.
Great video Toby. So true about the importance of the time you go to bed. I've slipped into a terrible routine of sleeping 8 or 9 hours from 3am til 11am or midday. Both my brain and body have suffered badly, even though I'm still getting 8 or 9 hours sleep! And it's very hard to get back on track from a messed up sleeping routine. I need to aim for 10pm or 11pm bedtime.
ForViewingOnly I've got a very noisy neighbours and one with a very loud noisy exhaust on his car at 11pm. I've had to move house 16 times because of bad neighbours. don't have enough money to live in non housing estates. plus I use foam earplugs but can still hear many sounds,tinnitus doesn't help either.im on diazepam, doctor's won't prescribe me melatonin, or sleeping tabs.😣
@@nopretribrapture2318
You can order melatonin from other countries. It is actually sth natural and doesn't require a prescription.
Also cbd can help and there are things like valerian, passiflora, st John's wort.
Plus magnesium citrate can help in the evening.
Look at herbs as a tea mixture or in a more concentrated form in tinctures and pills.
It’s been a 10 year long struggle for me and so yes I agree with everything in your video - I just had to do it the hard way - wish I had found it a long time ago 😱 for me most importantly from 6 pm minimal phone or computer screen time just a bit of tv, yoga but no heavy duty exercise, no tea or coffee and no emotional stimulants either.
Wow this was a wake up call! (Clearly i am commenting this at 2 am so i have a lot of work to do - haha!) I absolutely need to work on what time I go to bed . I get 'enough' sleep but miss ALL the most restorative hours. I can't wait to implement this and feel the change.
+Katie G. Make sure you check out my program which can help you with getting into a good sleep cycle and also movement to counter balance (good tired) Go to www.cfshealth.com :)
Thanks for the Video clip! Excuse me for chiming in, I would appreciate your initial thoughts. Have you ever tried - Dinanlinson Rebooting Health Approach (do a search on google)? It is a good exclusive guide for getting rid of chronic fatigue syndrome minus the normal expense. Ive heard some decent things about it and my close friend Aubrey after a lifetime of fighting got cool results with it.
Kudos for the Video! Excuse me for chiming in, I am interested in your opinion. Have you ever tried - Dinanlinson Rebooting Health Approach (Have a quick look on google cant remember the place now)? It is a smashing one off guide for getting rid of chronic fatigue syndrome without the headache. Ive heard some unbelievable things about it and my buddy finally got cool success with it.
I have no problems falling asleep but I always wake up with anxiety attacks starting at 4am which last until 7am. I don't remember the last time I've slept for 8 hours straight. The lack of sleep puts extra stress on my body, makes my heart race, so by the end of the day I feel too wired and tired to sleep. It's a vicious cycle. I find that taking short afternoon naps help me sleep better because naps help calm down my nervous system.
00BeesKnees00 could be hypoglycaemia
@@michaelfortune9997
Also the adrenals might be out of whack. Almost a sure sign.
Adrenaline/noradrenaline/Cortisol check is required.
Also thyroid and hormones.
You can start taking a bit of melatonine right before sleeping and then working on other issues that impact you negatively.
Hi Toby, thank's so much for your videos! It's a great help!!
Really informative thank you. I was wondering if this will help with too much vivid dreaming? On the rare occasion I have a good nights sleep I feel so much better the next day. At the moment this only happens with the help of herbal sleeping tablets.
Given the following is there something else I could be doing to help with better sleep? I go to bed at the same time. Turn the TV off 10pm and start getting ready for bed. In bed by 10.30 onwards. Listen to an audio book or a meditation to fall asleep to. Get up at the same time. Daily I try to pace but need more structure and consistency and do mindfulness meditation and gentle yin yoga stretches. I don't sleep during the day. I struggle with basic daily tasks currently. I don't have caffeine, sugar, dairy, alcohol. Eat heathily and reguarly. My trigger for CFS was glandualr fever almost four years ago. I am now 28.
Maybe turn the TV off earlier?
Thank you for any help.
Thanks for this video Toby, it's given me some motivation to work on my sleep patterns, and given me hope too! Thanks for being so bright and positive, just what I needed to hear today:). Also, love you daily emails...! Thank you!!!
Thanks Toby great information on the sleep.
What happens when all you want to is sleep and you find that you are pushing yourself all the time to stay awake in order to get thru the day. I am working full time and some days it is pretty ordinary
Grounding mats and blue light blockers have helped me
Thanks for your advices Toby.
+TheManWithNoName Thanks man with no name :)
Great videos Toby, thanks!
Thankyou Toby
Hi Toby, really good timing with this video! Sleep has been the trickiest part of recovery for me.
I'd like to share what is working for me along with what still isn't working:
Ok, so what has worked for me is having a consistent pre bedtime routine. This involves hot bath with epsom salts, followed by a small snack (e.g 2 boiled eggs), some reading / deep breathing and acupressure and then finally I take 2mg melatonin.
But the problem I still have is creating a regular wake / bed time. I have no issue with the discipline of getting into bed early, but what I find is that with every passing day it gets tougher and tougher to fall asleep. It's like I have a 27 hour circadian rhythm.
So what ultimately happens is I go to bed at same time every day and then it gets tougher to fall asleep with each passing day. If I wake up at the same time in the morning (having had less sleep), I begin to feel more and more tired, which then makes me feel wired and it's a vicious cycle! Eventually I end up semi-crashing, which means I sleep through my alarm by 3 hours and ruin my body-clock.
I've tried shortening my sleep time, but despite the fact I don't fall asleep straight away I am still obviously very tired as I sleep 8-9 hours straight. So when I do shorten my sleep time I just feel more wired the next day, which eventually kills my routine as outlined above.
I also make sure I do some light stretching / movement and often go to the local park to get sunlight / clear my mind.
It's been like this for 2 years now! But no matter what I try I cannot seem to find a solution..
Have you experienced 27 hour circadian rhythms or anything like this with other patients? Would really appreciate some insight.
Thanks
Ash
+ashley thompson Thanks for sharing Ash. Your efforts are great but now it seems that it is a pattern that your brain has picked up. It keeps running the same patterns around your sleep issue. Mental/emotional/physical are all intertwined. I will do a video on this soon. There is some good stuff on the brain that changes itself and neuro-science!
It’s so frustrating hearing how important sleep is and how damaging not sleeping is. It fuels the stress I already feel. I do all the sleep hygiene recommendations. Still not sleeping.
Great advice and vidio Toby. So helpfull. Thank you so much. Xx
One weird thing for me is - I don't sleep in the day, but - I also don't sleep properly during the night. Like last night for example - I woke up every hour. And it is so weird how it was every hour. I get up, look at the clock - 1 am. Go drink some water, get back in bed, wake up, look at the clock - 2 am. And so it goes on, every hour.
So I don't get continuous sleep during the night ... it is very interupted. I wish I could just sleep for 8 hours, without waking up.
But I must admit, I also have a lot of sleep, and turn a lot in my sleep. I can't stay in one sleeping position for too long.
+Dirk M
Hey mate, i've had this for ages with ME/CFS, have you found any solution to this? And how are you doing right now? :)
Rain Silverlight Focusing on my general health helped a bit. I am doing my own research, I think we all are.
I started taking Bone Broth 10 days ago, and it has a healing effect on my body, which in yurn helps me cope better. Google it, very interesting.
Dirk M lol if you keep looking at the clock that is extremely bad for you. You are actively stopping your body producing melatonin by looking at ANY artificial light between sunset and 5-8am ...
Rain Silverlight see my above comment- that to me is basic stuff (not the kind of info you get from below average UA-cam channels like CFS health lol
Thanks Toby.
I highly recommend the book or audiobook "why we sleep" by Matthew Walker. Or just search for Matthew Walker Joe Rogan on UA-cam where he has a great podcast. Lots of really insightful info here.
I think u got the best videos For brain fog ( I guess this my problem ) I basically got a problem for almost 3 years it make my life suck because I feel less energetic than what I use to be with feeling of dizzy and foggy and it's almost every day I'm a student and active guy I'm so worried about that because. I really want to work and study and have good life style
.. Having ( brain fog + unfocused and tired )) is it called brain fog ???
Btw I went to Doctor my result is good
Mohamad abd al rahman
Thank you for this video💜 I'm really struggling with sleep..
Because you watch BTS music videos all night till 3 am 😂
I love coffee so much Toby but I think coffee no later than 5 pm is fine ?
Hi Toby I find what I sent me with my sleep is a switch everything off in my bedroom so my room is nice and dark and then I can go to sleep in I don’t know for how long I only sleep for short periods but at least it’s made a big difference to me so if that’s a help to somebody else I’m glad to do it thank you
I just can't get the sleep under control. My pain in the day gets worse with any movement and when I'm not resting, but resting in the day messes up my sleep at night. I can go the whole night just laying there without ever falling asleep, and then the symptoms get scarily worse the next day. I just can't seem to find that balance, despite a rigorous daily routine of healthy meals, and winding down at night. Should I try to push through the pain and do more in the day to help me feel more tired at night, or should I listen to my body and just rest when it needs it, even at the detriment to my sleep? Thanks :)
I wondered if you might consider filming a short video for my channel?
I'm trying to recover from CFS at the moment and would love to have you feature over here.
Stefan
I say this as a person affected by MECFS for over 10 years. There is no such thing as getting tired "in a good way" with MECFS. Getting "sleepy" can be good, but it's never good to get more tired while having MECFS. It can be necessary if you have an emergency or have no caretaker, but it's still not advised.