Fatigue Misconceptions: Sleepiness, Laziness, cfs/me
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- Опубликовано: 13 сен 2024
- Fatigue Misconceptions, including ones about sleep, exercise, chronic fatigue syndrome, and more. Let's break the misconceptions!!!
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The views expressed in this video are my own and do not reflect the views of Mount Sinai Hospital.
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WHAT’S EHLERS-DANLOS SYNDROME?
The Ehlers-Danlos Syndromes (EDS) are a group of more than 13 genetic connective tissue disorders that affect the joints and ligaments, blood vessels, gastrointestinal tract, and autonomic nervous system, among others. The most common type of EDS is hypermobile EDS (hEDS), which used to be known at type III. Some of the most common symptoms and co-morbidities of hEDS include chronic joint pain, joint instability and dislocations, dysautonomia, and GI tract dysmotility.
MORE INFO ABOUT EDS:
🧬 www.ehlers-dan...
🧬 bit.ly/2N95xTE
MORE INFO ABOUT POTS:
💓 www.potsuk.org...
❤️ cle.clinic/2p1...
MORE INFO ABOUT GASTROPARESIS:
💚 mayocl.in/2BRQTuR
MORE INFO ABOUT MUSCLE TENSION DYSPHONIA:
🤍 bit.ly/2MLUYXI
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so true i always use “fatigue” to describe physical tiredness. NOT sleepiness. i can feel extremely fatigued without needing to sleep at all. the most fatigued i’ve ever felt, it felt like too much energy to even breathe. it took SO MUCH energy just to even fill my lungs with air. but i wasn’t sleepy. sleepiness and being fatigued aren’t the same
Fatigue is absolute exhaustion. To the point almost of physical collapse. You can fake it to make it. You don’t have to look exhausted to be utterly fatigued. Sleepiness is completely different. There is no comparison. It is not laziness. I hate that people keep using that term. I’m not going to say that I personally have never been lazy a moment of my life. But I also have been at moments, too many moments, I have been utterly exhausted and fatigued, and not able to instantly feel better just because someone wanted me too. I am FATIGUED! It is real, we’re not faking it. I don’t know how anyone could ever want to feel this way. I don’t want to, but I just do. There is no control of this.
@@jenniferdrake585 well from a medical terminology standpoint, no that's not true. fatigue does not have to be that extreme all the time. everyone experiences fatigue at some point. Being tired after a workout is fatigue, even for normal people. But "normal" people don't understand just how extreme fatigue can get for people like us. When we say we're tired or fatigued they think about their own experience with it and don't think it's that big of a deal. They have no idea how bad it can really get
When it’s bad- the fatigue- it’s BAD- it’s an all out can no longer function, you (I) MUST Lay down and literally pass out. Weather for 1-5? Hours, my body just neeeeds it, but it doesn’t necessarily help. Sometimes feel worse.
Thanks for the Video! Forgive me for the intrusion, I would appreciate your thoughts. Have you considered - Dinanlinson Rebooting Health Approach (do a google search)? It is a smashing one off guide for getting rid of chronic fatigue syndrome minus the hard work. Ive heard some decent things about it and my GF got great success with it.
That is totally me. I feel so bad for my husband, because he comes home and had to do more because I can't do it and then I'm just laying there so exhausted that I can't even stand. It really can be horrible.
Elizabeth Vandeventer my hub will come home at 5-6 and I’ve just gone up to lay down before he got home- body just gives out- and he gets mad- he still after 20 years doesn’t get my problems. Even though I’ve only Been dx under 4 years now, I’ve always known something was wrong. But we don’t get along anymore anyway. But it’s so frustrating being yelled at for what I can’t control.
@@katkaplan3 I'm so sorry that he yells at you. My husband is very understanding and helps me a lot. I'm so blessed to have him in my life. I will pray for your husband to have more empathy for you. GOD bless you and keep you in HIS comforting arms.
Elizabeth Vandeventer thank you 🙏🏻. You are lucky to have an understanding caring husband
Yes! Chronic Fatigue Syndrome makes it feel like wading through thick, chest deep mud -mentally and physically. Adding that to EDS, fibro, IBS, and other issues definitely complicates things.
"You can just push through" is another one I hear a lot. Yes, sometimes I can. Then there is a point where I can't anymore. If I let myself get to that point. Recovery takes so much longer. People just don't get it.
My whole life I was told that I was just lazy and I wasn't trying hard enough. Or dramatic. To the point I truly believed it and hated myself. Well, as an adult when I finally can go to the doctor and find out all the issues I actually have and things start to make sense. Now trying to work through all the issues that built up because of that. I will show this video to some people in my life that need a little more help understanding. Good video!
I hate being told I'm just lazy or should just get more sleep.
Like... I want to get up and deep clean my whole apartment. But sometimes I have to choose between throwing that one thing away or making it to the bathroom if I have to be sick later.
I can sleep for twelve hours or not sleep for three days and have the same amount of energy.
Yep. 😕
Yes born with the fatigue at birth I slept 23 hrs a day
Yess!! Fatigue is more like moving through quick sand. Every movement, from scratching my face to working, feels like it is in slow motion and like my limbs are being weighed down. Gravity feels like it is pulling down harder on my body.
I love how you talk about how when you get too tired to follow conversations you just pretend. That Happens to me a whole lot, and it’s actually depressing because it severely impacts my social life
Definitely going to share this with my family. It is so hard to get them to understand this, and I get so frustrated trying to explain to them.
I am going to show this to my family to help them understand. Thanks for such great videos consistently!
Thanks for addressing the LAZY thing, pisses me off so much 🤬
I subconsciously call myself lazy all the time and i need to stop that too
I think a good description would be drained and weak.. Nothing like just being tired
this is so spot on! I have fibromyalgia and some other things and the fatigue is so unexplainable to anyone who hasn't experienced it. it's like being cast in concrete some days! loooove your channel x
Wanting to get things done and being prevented from doing those things by the way you feel also adds a feeling of frustration and even guilt for not being able to keep up with what you know you should be able to do.
As far as the sleeping thing, I agree that you're not necessarily sleepy-tired, you're physically-tired and there's a difference. It may be one or both. And this is where the "spoon theory" comes in - when you're physically tired already but choose to push through it to get some things done, you may have just used up all your daily "spoons" AND some of tomorrow's "spoons". So now you need a day or two of doing absolutely nothing while you collect some "spoons" again. And while you're resting for these extra days, you're missing out on fun, social things, like going to dinner or grocery shopping that someone else does without you.
Great video Izzy. Thank you!
Great video! I love all the points you made, especially the one about sleeping. I have insomnia along with hEDS fatigue and I struggle to explain how sleepiness from insomnia is different than fatigue. Next time someone asks I'll show them this video!
I also find trying to explain the difference between tired and fatigued can be difficult! I guess, like she said, unless the person has actually experienced fatigue then it must be difficult to understand (just like a lot of things!)
Thank you so much for this fatigue, pain and medication have really affected my ability to get the right word out of my mouth and my memory. So i can never get across how exhausted i am nearly all day, every day.
I'm showing this to everyone thank you again. 💜🥴
P.s. lol it took me about 20 mins to type this
Hi Izzy. You did a great job on explaining fatigue. I have chronic fatigue syndrome also known as ME and I have had it for over 30 years. I was swimming in a like that was very polluted but I did not know it and I got some viruses and ever since then I've never been the same at all. Just having a conversation with someone can be debilitating. People just don't understand that. How could it be hard to talk to someone. it can be. I have never in my life woken up refreshed from sleeping. And I have the worst sleeping problems even though I am fatigued Beyond belief. This is a great topic that you talked on today and it's so important because it's one of the most misunderstood things that a person can be dealing with and it can ruin a person's life. Thanks for making this video I related to every single part of it.
♥
How are you now I am the same all.my.life
Hi! I found your channel about a month or so ago right around when I was diagnosed with hEDS. We honestly have very similar stories and symptoms except my worst joint is either my hips or wrists. I have dealt with so much invalidation being called a hypochondriac or dramatic or an attention whore or simply a baby. However, your channel is really helping me cope. Thank you so much because your story and explanations are showing me it wasn't/isn't all in my head and it's really helping me process this major change im facing. Seriously, I can't thank you enough ❤️❤️❤️
This is such a good video. I really like your last point. I think people also might assume you're depressed (rather than lazy) if you don't do things. But I always WANT to do things . . . I just can't a lot of the time. I feel like I'm a hyper person stuck in a sick person's body, so maybe EDS and POTS just help reign me in. ;)
I have Fibromyalgia and Sacroiliitis. The biggest symptom from the FM (besides the pain), is fatigue. I can't function on a daily basis like I should. I have to push myself to shower, get dressed, go out or even clean the house. Most days, I only have enough energy to fix dinner and clean up in the kitchen.
And if someone hasn't experienced fatigue, they have no clue what it's like to deal with it. I'm not living anymore, only existing.
Yep, same.
So very helpful to me. I have a loved one who has EDS, POTS, dysautonomia and other things, like arthritis and oral allergy syndrome. I have not ever called her lazy, however, I have said many of the things you mention in your video to her, like you will feel better when you get there, or exercise will help..etc, etc, etc...I try to educate myself, and I appreciate you sharing your experiences. My loved one is so kind to me and patient, even though some of the things I have said in an effort to help must have been frustrating and hurtful. She has never made me feel bad about it or became angry with me. Her experience with theses conditions may not be the same as yours, but I feel that by you sharing your experiences I can learn to be a better support system for her.
Thanks.
It’s so awesome that you’re trying to educate yourself about your friends condition! I’m sure she really appreciates it - I know it means a lot to me when my friends try to understand ❤️
If you and your friend are interested, it helps my mouth tenderness to use sulfate-free toothpaste. I'm currently using hello brand kid's strawberry flavor because it's sulfate-free, but still has flouride. Leaving virtual love and spoons here for all who want them. ❤️❤️❤️🥄🥄🥄
My main goal is just to keep my body moving, eat healthily, and rest. It may not help the fatigue, pain, or any of my other symptoms but hopefully prevent further issues. I've been dealing with this for almost 4 decades so I've learned to pace myself and I know my body so it can be frustrating when doctors or others don't understand. I don't think one can understand this unless they actually end up having it. I tell them to imagine having the weakness the flu can give them and it never goes away. Most just don't believe it. They think I MUST be doing something wrong...like not "believing" enough or not eating healthy or not exercising enough or whatever. I've tried it all...nothing has helped. Thanks for this awesome video.🌴
Well I don’t have this, I’m exhausted. When I wake up I have to take atleast 10 minutes to get out of bed. Then when that is accomplished, I was 8 feet and lay on the couch because I’m so tired or feel like I may pass out. Or after a shower I feel like I ran a 5k run. It’s crazy how the simplest things just wear you down. And I think it’s worse when people think they know, but really haven’t the slightest clue.
I've been living with CFS (unknowingly) for at least a year. For me, sleep and naps feel more like a ''pause'' for my brain to get away from stimulation, more than actual recharge. I'm gonna get a little bit of energy from it, but I'm gonna get almost as much from just laying in silence without sleeping cause my body seem to get ''too tired to sleep'' and run on adrenaline to keep me from resting properly. A misconception that kept me from asking for help for so long was that being able to do a lot or do big tasks means that we are not disabled. I would have big spurs of energy but crash for three days after, making tiny daily things almost impossible. I really appreciate what you are doing with those informative videos. It helps me accepting my current situation and explaining it better to my relatives. :)
I never felt comfortable calling myself a spoonie because I never consciously rationed my energy... Now I'm realizing that just because it wasn't conscious, that doesn't mean it wasn't happening. I always just thought I was lazy, or had executive functioning issues. But I'm not even sure if I know what lazy actually feels like. I constantly have so much guilt hanging over me for the things I know I need to be doing, but just can't make myself do. And I've always been able to force myself to move for things that are pressing, like needing to use the restroom, and so I have no concept of how much energy things take and when I have more or less. It's really difficult and confusing, but this video helped me understand why I might not need to beat myself up quite as much. Thank you.
The weirdest thing about my fatigue is that I am literally not tired in the sense of sleepiness. I do not feel sleepiness. I have not done for decades. I did, for three weeks after I changed my medication, and it truly was a horrid feeling too. I was investigated for sleep disturbances at the hospital and they concluded that I sleep too little. The problems is that I cannot sleep. Luckily it does not affect my alertness or does not cause me brain fog.
That is, my fatigue is definitely psychical and likely caused by POTS. Just lack of energy and strength that makes it exhausting to sit or do anything physical. Sometimes even sitting leads me to vomit, get dizzy and make my muscles tremble, because the body is under too much stress and it cannot keep up the blood pressure and oxygenation levels up. Normally it's just standing up too long or extorting myself by carrying shopping bags etc. that cause those symptoms.
And I hate staying in bed. There is nothing worse than doing nothing.
I donate plasma twice a week and as soon as I saw this when I came home from donating the Wednesday after you released this video I completely understood the “fatigue” symptom that occurs following a donation. Thank you!
That's really interesting because people with POTS and/or CFS often have abnormally low blood volume and improve with saline (which increases blood volume).
I've never donated blood but I have CFS and can get quite POTSy when I'm really unwell so I definitely wouldn't try haha
I suffer from fatigue. Was totally in denial for years but now I realize it. Yeah you are right, people don’t get it. Stress is my trigger, I believe.
I think this is such a good video explaining it. I always tell myself I should try to get more sleep at night (I get at least 8/9 hours a night already though) but even when I do, I don’t really feel much better. And I have two kids so by the time they go to bed, I’d have no time to myself/with my husband. It’s really hard to not feel like I’m lazy and to feel like I should such it up and do more but then I pay for it if I do have the energy and if I don’t, it feels like I’m moving through quicksand. It’s so hard and so misunderstood.
Wow, I'm only about halfway through the video and you articulate things I've been trying for years to put into words. You're awesome!
Even though my mom can relate because she has chronic fatigue/ fibromyalgia... She still responds to my struggle with a "just deal with it" (working, single parenting, trying to maintain relationships) attitude. She was on welfare while I was growing up so sometimes it is just bare-bones survival with these issues.
You explained it really well. Everything you said i was like yes exactly. Definitely going to show this video to some people. Maybe hearing it from someone else that's going through the same thing I am might help them understand a little bit better. I love this video and I love your channel.💜💙💚
I have GHSD with MASSIVE fatigue problems and this is sooooo true. The only thing different for me is that coffee helps and my fatigue makes me want to sleep (though I can’t fall asleep)
"It's going to take so much out of me, and people think they know better. You'll enjoy it once you get there!" -- this sums up pretty much my last relationship, I was 'lazy', and 'attention seeking', 'made everything about' me and 'never wanted to do anything'
Not true, I wanted to do plenty...I just couldnt sometimes
It’s such a hard thing to explain to people when they just don’t understand xxx.xxx
Thank you so much for this. I've been struggle with fatigue for the last 3 months. I come home from work and sleep what seems like forever and wake up tired. It's nice to know that others go through this as well
Great video! My husband and I communicate thru spoons sometimes. I’ll tell him I have 1 spoon left so I can do this or that? He can understand that visual. I have hEDS. I had more good days than bad. Then a couple yrs ago, I had a Stevens Johnson Syndrome reaction to a medication I had never taken before. My pain and fatigue has never returned to my EDS level, which I would gladly welcome at this point. I have to constantly remind myself that I’m not lazy or depressed. My body is still repairing and I must give it time to recover. Ty for your encouraging words!
Hang in there. I had lyme disease for 2 years. Bedridden 13 months. No one believed I was sick because it's difficult to diagnose. I was told I was depressed and my illness "is a personal problem". My mother died in the middle of my illness. I made it on my own. It was a miracle I recovered.
What were your symptoms
This is so relatable!! I hate HAAAAAAAATE being called lazy. my family always goes off at me..
My 6 year old told me I was lazy and it broke my heart. I tried to explain it to her but she can not understand the difference.
Chronic Reader I know this is 5 months later but my heart just breaks for you and how you must have felt then. I have a 6 year old and a 3.5 year old and it’s so incredibly hard to parent with fatigue (and potentially other issues, since fatigue so frequently comes along with other chronic health problems). We talk a lot in our house about how I feel and how my body isn’t like normal moms’ bodies but that I do the best I can and that what matters most is that I love my kids. I hope you’re doing ok and that your daughter is starting to understand as best as she can. Hugs ❤️
Finally though someone understands what I go through
I confused my fatigue with depression for many years. I would sleep so so so much and it was so hard to get to my classes. Then I I started to become depressed because I wasn't doing well in school anymore because I was so tired. I convinced myself that I must have been depressed all along and that was why I was so tired. I look back at that time in my life now knowing my chronic illness and think wow! I really convinced myself that I was depressed. I didn't get help for it either because of fear. I just started doing yoga and tried positive journaling. It helped some but I was still so tired. So glad that I understand now what is going on even if it is just a label.
From what I know, fatigue is something the body does to itself to protect it while it is recovering from an illness. Like when someone has the flu and it wipes you out. Everyone probably thinks that the virus is what is causing you to feel fatigued but it is actually your own body trying to protect you. Like it wants you sleeping in the cave to protect you from the predator. That is why sleep does not help fatigue. Once you recover from the flu the body stops sending the fatigue signals but with chronic fatigue the signaling keeps getting incorrectly sent. The signaling process is not fully understood yet but maybe in the future we can fix this process.
Yes, being fatigued all the time to me feels like having the flu without throwing up. My muscles ache, I even get a few hot and cold flashes but mostly just fatigue.
this is such a great description. I was always called lazy growing up and I believed it so hard even when I'm currently going through the process of getting diagnosed with EDS and just got diagnosed with POTS so I know its a "valid" symptom of mine. It only just hit me the other day how real it actually was when a game came out that I was so excited to play and I couldn't wait to play it. I wanted to replay the first one and be right there when it released but the day before went by and I couldnt pull myself out of bed...then the day of the release and I just couldn't. get. up. I finally pulled myself up several hours after release and got about an hour in before I all but collapsed, where with my normal personality I would've been up all night and finished in one sitting. I cant think of anything else I could've been more excited about than that, anything else I had more motivation for, yet I still physically couldn't do it no matter how much I wanted to or was yelling at myself to get up. At that point I finally realized this was a physical condition, not just me being lazy and not trying hard enough
oof. This made me realize 💡I should totally ask some doctors about how my fatigue interacts with some of my other disorders. 🤔
You explained that well
I'm so glad you made this video. I've been struggling with my health for years and it definitely runs in my family. The doctors I've worked with have only tried to alleviate various symptoms and not find the root cause. I don't deal with fatigue as much anymore, thankfully, but it used to be debilitating. It was as if all the energy in my body got sucked out and I couldn't physically do the things I needed to. It was super embarrassing to be 15/16/17 and have to ask your parents to help you go to the bathroom. I got proper sleep, good nutrition, etc, but none of that really made much of a difference. I just called the episodes 'energy crashes' because I didn't know what it was. Sometimes the only thing to do was sleep, and if I did fall asleep, I couldn't be woken up. It scared my parents and it also scared me, but most of all, it impacted my ability to do all the things a 'normal' high schooler wants to do.
I have primary immunodeficiency, so I feel that fatigue like when people have a cold, but every day. Everything takes so much effort. I had to tell myself for about 30 minutes after dinner to get up and put laundry in the washing machine. Those activities people take for granted and just do, people with fatigue have to be their own cheerleaders to do those tasks.
All of this video, yes! Even with a diagnosis of narcolepsy I still have people in my life, who both know and don't know about it, think that I'm lazy or call me lazy to my face and it really hurts because it feels like no one really understands. It's nice to know that there are people out there who do know what it's like to be so extremely fatigued.
Shared with my family. You explained it better than I ever could!!
I used to have fatigue so many days and only a good day once every few months. I would get so excited for that energy and plan my days just to wake up the next day realizing that the previous day was a glimpse....a blessing. One of those pumpkin at midnight sort of deals. Now I suffer only bad day when I way overdo it and most are good. I overdid it and went on a long vacation which set off 2 weeks of fatigue. I'm in a much better place than I was a few years ago but not as good as I was last year. Vertigo has come back full force and I fell over today at work because I couldn't fight the dizzy spell. So embarrassing. Wish I knew why I was so fatigued. I've found that if I take one day a week to rest that I don't generally crash. This has helped me. Finding bits and pieces of what is causing the fatigue has helped but I'm at another brick wall and it's discouraging.
Chronic pain increases fatigue too, an action that hurts takes so much more energy than one that doesn't. Pain leaves you exhausted. Its awful
I don't have fatigue but I have pain and it has a similar effect on me. So I can relate.
OMG I so understand what you are saying. I’m tired of people saying I’m lazy or should get up and get moving. I was going to the gym and quit going because I would be so exhausted that I had to go to bed afterwards.
I'm one of those exceptionally unfortunate people with both EDS related fatigue and ideopathic Hypersomnia (similar to narcolepsy). It seems to be an EDS comorbid condition. I can sleep 20 hours, take lots of stimulants, and still be sleepy.
Of course, mood does impact this sort of fatigue to some degree. Or rather, my depression compounds it. Lately, I'm averaging 6-8 hours a day awake.
Exercise does help Hypersomnia, but it has to be worked up to. It's like over time it adds spoons, but initially, it just eats them up! Combine it with POTS and it's just a mess.
Just a little note, the main symptom of CFS is PEM (Post-Exertional Malaise) and not fatigue. So the name dosen't really fit, thats one of the reasons a lot of countries use the other name for it insted, wich is M.E. Some places also call it ME/CFS or CFS/ME. (but let's not get in to the different diagnosis critirea, and why some call it one over the other).
I think with MS exersize can help, but with ME it can make it worse.
Thank you for explaining this 🥰🥰🥰
This reminds me of Jessica Kellgren-Fozard’s video on this same issue. It’s very interesting and insightful!
Thank you.
I have Chronic fatigue due to Sleep Apnea and that’s why my Neurologist is wanting me to do another sleep study and wear the mask while I’m sleeping and see if that will help me sleep better. But add in my EDS and Epilepsy, Chronic Fatigue is a comorbidity to both of them. We aren’t lazy, we’re trying to do something but we just run out of steam or we run out of spoons . I try to do my job and I try to help around the house but I just need help because I run out of my energy or spoons by just trying to clean up the kitchen and the dining room table all by myself. That doesn’t warrant me being called lazy!
Fatigue is massively worse during a POTS flare.. 🤦🏼♀️ and MCAS flares.. the fatigue is crippling and so so misunderstood by medical practitioners x
this is so good! also that table is really cute
hahahahhaha im glad you like the table!!!
Great video, but I would like to something about the ME/CFS. Yes, the fatigue is the leading symptome. But the disease is not defined by that. It's defined by post-exertional malaise, meaning that not only your fatigue, but also other symptoms are worsened after exertion. For me, POTS, sicca, headaches, brain fog etc. get worse with exertion when PEM strikes. This is a defining characteristic of ME/CFS. Some people are wrongly diagnosed by it due to long-lasting fatigue, which can be a symptome of many different pathologies or even simply by a body abuse (poor diet, poor sleeping habits, over exercising etc.).
Is the fatigue a symptome of EDS by itself? A kinda doubt it. My syster who is also very hypermobile and have issues, related to EDS (POTS, MCAS,...) doesn't suffer from fatigue. And there is a huge overlap in hypermobility and ME/CFS & fibro. When EDS patients suffer from prolonged fatigue it may very well be due to ME/CFS. This is my view. What do you think?
I hate that I have to choose between doing things that should be done (like work or cooking) and being able to enjoy myself like seeing my friends.
Good one!
1055 timestamps for reference: It feels like people think of fatigue as depression ...( or in that ballpark) and that it will help us emotionally but it be fatigue w/o depression , Maybe because they don't know true fatigue.🤷🏼♀️
When my me/cfs post exertional malaise hits, it makes my pots so much worse. At feels like there isnt enough energy in my body to operate my already faulty autonomic nervous system. Its horrible. I have had symptoms of pots since puberty (20+ years). Then I caught a summer time flu like illness 4 years ago and it fried my body and cns (neuro said it hit my cns). Trying to explain this to other doctors and being today to just push through is frustrating because I lived the first 3 years in denial/think they would find something to fix/not being told CFS was already in my chart. So I did PT and was more than happy to start exercising again.... But it made me worse. Now if I push through, I am bedbound for 2 weeks and feel like sh*t for over a month. And I am still told to push through like my body gives me a choice to. I am a firm believer of Mind Over Matter but what happens when the matter over rules the mind? What do we do then? Why cant doctors understand that was was a very active person and now my body is failing me? "Just try to push through. Exercise is the answer".
You look amazing Izzy hope your well very interesting educational and important video love you Izzy
Great video. I grew up with multiple heart defects. And as a kid I danced etc. then in my teens I rode horses (easier on the heart), then in my 20's to 30's I noticed exercise of any kind aerobically was draining me to the point that I couldn't move or stand up straight w/in 10 minutes. It took 2.5 years recently just to gain enough endurance to power walk/slow jog for just 4 minutes straight. And I have never been more proud. Seems small, but it is huge to me. It is not and never has been a lack of motivation or laziness ... it is hard to explain to someone who gets energized after exercise. But ... that is why I keep trying. Exercise is an essential aspect of health but not always a cure for SURE. It can't reverse artery occlusions or defects ... Thank you for this video.
Have you tried swim?
@@vikhashiniananth7601 I have! I used to be good at it way back when. (The back stroke anyway)
I was just thinking that I need to learn to tread water properly so I don’t waste precious energy 😂
@@jaccrazy21 Haha yes... swimming seems to be the best sport for me because of being able to take breaks and have the water help with blood circulation unlike running or anything standing up :)
@@vikhashiniananth7601 The way I tread water ain’t no breaks. So I will work on that. Probably enjoy the water more, and then let you know haha! Agree that it is so non weight bearing such a helpful sport!
@@jaccrazy21 Haha I stop at the walls.
YESSS TO ALL OF THESE!!!
Chronic Fatigue Syndrome has a better name, Myalgic Encephalomyelitis. It's defined not so much by fatigue but by Post Exertional Neuro-Immune Exhaustion (PENE). This is a widely misunderstood condition with the shittiest name ever. They've discovered a biomarker in blood tests at Stanford for ME/CFS. And another unique thing about ME/CFS, you can't really exercise the way you can for most other things. You risk making yourself worse, or in some cases (like mine) bedridden. I've been taught to pace. Some people also have to be on anti-virals for life w/ this condition. I know I'm immunocompromised to viruses because of this thanks to the work Nancy Klimas (a Clinical Immunologist, also featured on Unrest) has done.
The best documentaries for this are Forgotten Plague & Unrest. Both are either on Prime Video or Netflix. Some places acknowledge 2 different illnesses of ME & CFS, but in America they are categorized as the same illness. I'm not sure whether I agree with that or not. I'd need to know whether there are 2 different illnesses truly.
My ME/CFS was viral onset in 2015. Which is common. Many ME sufferers say it started with a virus, or an infection, or something they never really recovered from. It escalated my health from a fulltime college student with an internship & a weekend job, to needing a disabled placard, a cane, & eventually I was forced from my classes & jobs due to the pain & lack of energy w/ fatigue. Because I pushed myself at the insistence of a doctor who had zero clue of what she was doing, I ended up bedridden for around a year.
So if you think you suffer from this, please do your research. Your quality of life is so important.
I'd say the unchargeable theory works a little better for ME & other fatigue issues. It's where you wake up, and much like a phone battery, you only have so much % of your battery. While everyone else has 100%, you could have 50%, 30%, I'd say I wake up with about 15-20% now, it used to be 10%. That increase is thanks to some of my treatments. So you can wake up with, say 30%, take a shower & that uses 10% of your battery, you're down to 20%. So essentially when you get too low, you have to recharge. And because we have a broken battery, it takes a lot longer most times. (It goes something like this. You can Google the Unchargeable Theory too.)
Mine was viral-onset, too.
Glad to see someone mention PENE. It's a helpful, but cumbersome name for a very real issue.
It is. PENE is the unique hallmark symptom, & personally they should have stuck with naming the illnesses after the doctor who discovered it. Then it would still be Ramsay's Disease I believe. Although he named it Myalgic Encephalomyelitis I think. No idea when this CFS name came about, but it's done nothing to help our cause. I always say the ME name, the say they may know it as the crappy name of CFS that isn't accurate for it period.
I'm sorry for your suffering of ME/CFS with PENE as well.
How have we never met and you are talking about my life? Lol!
Thank you for this Izzy ❤️
On my bad days I’m so fatigued it feels like I’m literally dying because even breathing is tiring
Coffee, caffeine in general (stimulant) causes me to have a pseudo seizure with the pots. Just recently found this out.
It may not be CFS. It may be liver disease which causes chronic fatigue. Cut all carbs and sugar which causes NAFLD. Hashimoto’s Thyroiditis also mimics CFS.
does anybody sleep a lot? i have eds/pots and i have fatigue in my head and body but i also have drowsiness and sleepiness.
personally i have a weird loophole where if i can drag myself to exercise - once i get into it i’m super on the ball but when i finish i maybe get an hour of benifit and then my entire body is dead to the world for the next three or four days.
My doctor said that when I feel fatigued just try to do a bit more so that I don't fall asleep. If I'm in a fatigued state I'll crash and just sleep if I sit or lay down. Sleeping doesn't help as you said but my body wants to sleep... Come that night though if I slept it'll just be harder to sleep, I won't be less fatigued just now not sleeping.
I have ME, EDS, Fibromyalgia, and pots. Out of all of these I am the most sickest from the ME. I have the severe type and I am bedbound.. I am getting to the point where I can barely move my hands. I can hardly lift my head off the pillow. I cannot do anything by myself now. If I try to push past and do any of these things such as brush my teeth or bathe, I will suffer PEM. Postexertional malaise which is a type of crash that make our baselines so much worse than it was and last for months to years. Fatigue is just a part of it.
I think its a mistake to separate cfs and eds. Eds makes you more susceptible to cfs, and most of the cfsers i know have a form of eds
Great video! 💕
👍👍👍👍👍
Thanks for the video!
Fatigues is not ME/cfs
At all.
Your right, fatigue can be a symptom for any kind of illness
Like Lupus or thyroid or a chronic fatigue illness by it self.
ME/Cfs is a separate disease illness on its own, with over 50 symptoms in clueing severe Fatigue.
and virus and stomach problem inflammation and severe pain that never go away.
Paralysis and never ending symptoms 24 hours days.
It’s as many symptoms of many different illness.
Everything effect you make you sick
Some of us cannot eat or keep food down.
Months or year you can be bedridden or housebound if you have Med to severe ME/cfs
For me I am wheelchair and house bound and bedridden most time.
Severe Cognitive dysfunction.
With ME /cfs people would know when you have a flare or if your a severe ME cfs case.
Fatigue and depression is always mistaken for ME/cfs.
Thats what Doctors try to say we have fatigue or depression cause they don’t know how to deal with ME/cfs sufferers.
for me fatigue is physically not being able to lift my arm the 30cm to my computer key pad in order to skip the adds during this video and leaving the tab open in order to write this comment two days later...
"Just" do this thing (that I probably already tried) and I'll miraculously feel better this time??? People who haven't experienced issues often don't understand how bad things can be. I don't know if this makes sense but when I'm "not bad," I'm still worse than I was before things got bad.
I'm not sure if I have it, but even when I am not going to school in a vacation/holiday I just feel so exhausted. I can sleep 9 hours per night plus 4 hours of nap every day and I still feel mentally and physically exhausted, and even my doctor said that it was normal but I don't think it is. Even eating can make me tired.
Tomorrow I have an appointment with a neurologist for my migraines and shaking hands, I will talk with her about it but the last time I spoke with her she said to me that I had to sleep less and it would work.
I feel soo self concious If i let it slip and complain how tired or exhausted I am in front of my friends who are parents. I feel they are judging me like "b*tch what could you possibly be tired from" since I am on disability and childless.
I am learning to not get self concious about it, I will get there soon.
I am on disability and childless, I just joke, " I am tired and I haven't even done anything..."
Loved the video though the explanation about cfs was a bit off. It can have a cause like an infection. I think the difference really lies in the PEM that you get with chronic fatigue. For example you might do an activity that causes an PEM and be extra exhausted the next day and have flu like symptoms. Recovery of that can take weeks or even months and you might never feel the way you felt before. With normal fatigue you might get exhausted after an activity but you will return to your usual level of energy after a while. If I didn't explain this well or I missed something, please comment! I don't want to spread misinformation :)
I'm just in high school and I'm always tired..I dont know what I have.
I have been feeling a lot of fatigue lately I would be trying to do something and feel dizzy and sluggish and sometimes when I'm reading I feel like I'm passing out. I have cerebral palsy
It had to be said!
I have severe fibromyalgia too.
My fatigue comes with a dull ache all over my body, making rest so hard.
I have CFS/ME. I hate when drs tell me to exercise more. 🙄 One way to define CFS/ME...I feel like I’ve done 100 push ups just from brushing my hair. It’s waking up tired lol
If I sleep while am like that I will wake up with my heart racing so I don’t sleep when am low in energy.
i think i've gotten noticeable stronger, but i still wear out quickly when shaving, screwing the pepper mill, dishes or other house chores
I am bedbound with ME/CFS.
In ME the cause is not always unknown.And like many with severe ME I cant sleep anymore and dont like the widd fatigue since it is more a strange weakness feeling for many of us.I have POTS too.I would like to know if doctors force EDS Patients too,to exercise or not?
I should stop trying to keep up with everyone else. I just fear their judgement I suppose?
Thank yoooouuuuu
love you video