Izzy K DNA
How to manage chronic fatigue *according to 800 people with fatigue*
How to manage chronic fatigue, according to 800 people with fatigue. In this video we discuss tips, medications, and lifestyle modifications that have helped some of you manage your fatigue better. #fatigue #chronicfatigue
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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:
🧬 https://www.ehlers-danlos.com/eds-types/
🧬 https://bit.ly/2N95xTE
MORE INFO ABOUT POTS:
💓 https://www.potsuk.org/what_is_pots2
❤️ https://cle.clinic/2p1lByR
MORE INFO ABOUT GASTROPARESIS:
💚 https://mayocl.in/2BRQTuR
MORE INFO ABOUT MUSCLE TENSION DYSPHONIA:
🤍 https://bit.ly/2MLUYXI
FTC Disclaimer: This is not a sponsored video.
As an Amazon Associate, I earn from qualifying purchases.
hey everyone hope you're doing well and i hope that you can hear me okay because i'm currently not using my mic uh today i wanted to make a video talking about fatigue because this is something that really really impacts me and i know impacts others a lot so i decided to make a survey and i asked people who have any kind of chronic illness and deal with the t to fill it out we have data from like 800 or 900 people saying what works for them 631 of these people were diagnosed with either a type of ehlers-danlos syndrome or a type of hypermobility spectrum disorder and 566 were diagnosed with pots or some type of dysautonomia so there's obviously quite a lot of overlap between there why am i getting dizzy so we're gonna go over that here's the age distribution um so just so you have some idea typically people were in their late teens or early twenties and a lot of people who filled this out have been dealing with such like honestly really bad fatigue i'm sad to see the numbers that it's this bad especially considering that there's not great treatment i ask people to rank how bad their fatigue is on a typical day um over the past month and i know we all hate those questions like one to ten um you know rank it i just don't really know how else to assess the severity of somebody's fatigue most people answered a six which is really really bad i would not give myself a six on my typical day at all i also asked how bad it is when it's at its worst so you know like the worst that your fatigue has ever been and 37 of people said a 10 um and then 33 said a nine for me i think i probably answered this eight and it's so rarely that bad um it's usually just like that after a shower if it's really hot and i screw myself over and like for somebody who does not deal with fatigue what i would call an eight is like i can't get up like i'm stuck in bed i'm gonna need to maybe call my mom to go get me something if somebody gave me food i would not eat it like it's just the amount of effort that it takes to do everything even pick up my phone is so much that i'd probably just lie there and like stare at the wall or something or my pillow or whatever and not not move until it gets a little bit better um so just so people can understand like the level of fatigue that we're talking about future self here i'm actually gonna be coming into this video quite a lot because especially towards the end in this video i actually start like not feeling so well so i think i just cut it short and never quite finished it and then there are some things that i just if they're unintelligible and so i am popping in and i will be replacing those sections just so you know a lot of people who follow me have the same conditions that i deal with so that tends to be people who have eds or hsd and then people who have pots slash dysautonomia and while it's known that fatigue is a really big symptom for both of those conditions i was curious how fatigue stacked up to the other common symptoms of these conditions so what i decided to do was ask everybody who has eds hsd to rank a list of i think i gave them six different symptoms that are really common in eds and i had them rank you know which is the worst which is the second worst which is the third worst etc um so the symptoms i provided were pain dislocations or hypermobility fatigue gi issues dizziness fainting or pre-syncope brain fog and then either a symptom that i didn't list here or um like no other symptom so most people say that their worst symptom is pain which is not surprising at all pain is a huge problem for people with eds but other than pain the worst symptom for many people was fatigued another great way to look at this is if we look at the number of people who ranked each symptom as one of their worst two symptoms so by doing that method we see that 64 of people ranked pain as either their worst symptom or their second to worst symptom if they have eds or hsd 57 of people said that fatigue is either their worst symptom or their second to worst symptom and there's just quite a difference between pain and fatigue versus all the other symptoms that i have provided of course though i didn't provide that many symptoms so people could be dealing with so many other symptoms um that could be even worse than their pain or fatigue and the other thing that kind of complicates this is that this was a survey about fatigue so it probably draws in people who tend to deal with more fatigue because they're more interested in participating in a study about that i'm curious to hear what you think just because i think a lot of the times fatigue is like skipped over when we talk about it because to me it's like a given but i don't i don't know i also think sometimes fatigue isn't considered as valid or as real and so you don't want to say it even if it's something that you're really struggling with i definitely experience that but i don't consciously say oh don't talk about the fatigue i just don't do it and i don't know why um like it's not a valid symptom compared to others in my mind sometimes which like doesn't make any sense at all why i think that i also provided a list of symptoms to people who have a diagnosis of pots or dysautonomia and the list of symptoms that i had provided by the way for this was brain fog fainting or syncope fatigue gi issues dizziness and then a symptom that's not listed and i asked them to rank the symptoms and the worst symptom for the most number of people is fatigue that's not surprising to me but it might be surprising to you as you can see 70 of people with pots say that fatigue is either their worst symptom or their second worst symptom and after that all the other symptoms that i provided were dramatically lower so the next highest was dizziness and then gi issues but they were so different from fatigue that you can really see how prominent fatigue is for people who have pots or dysautonomia i asked them a couple other things so the first was if you experience brain fog and fatigue do they tend to happen at the same time so i deal with a lot of brain fog sometimes and my fatigue and brain fog tend to happen at the same time around half of people said that they frequently occurred together almost nobody said rarely or never occurred together so it seems like they they can definitely occur together or they do so now we're going to get into what helps people who have fatigue everybody wrote down what helps them and i was able to classify each of the answers into different kind of like categories so a lot of things were written that are not included here but these are keywords that people tended to use let's get into it the first thing is a pretty basic answer sleep and naps i think that makes a lot of sense i wouldn't necessarily say that those things help so much as if you're not getting enough of those things you start to feel worse at least that's the way it is for me um but some people might actually feel better from sleeping and napping the next thing is coffee or caffeine i think for some people this really works for some people it does not work at all or even makes them feel worse and then for some you're kind of in the middle i'm kind of in the middle because sometimes it helps me sometimes i actually feel worse from it and i think a lot of people kind of toggle back and forth between the two as well i mean i think if you've never given caffeine a try which i highly doubt you have not because if you deal with fatigue you've probably tried a lot of things but i would say that's worth a try if you've never tried that um coffee is a good way to get it maybe tea but there's not that much in there 151 people said that lying down helps them so i kind of interpret this as not sleeping but you're lying down maybe you're looking at your phone maybe you're reading whatever it is you're relaxing and you're not really moving i mean this certainly helps me and this is certainly what i need when i am very fatigued um sometimes though i think it can make you feel a little bit worse at least it can for me um like if i'm feeling fatigued and i lie down i might literally crash um but i think it's probably because i've been pushing myself too much next hydration super important um i don't know if hydration helps me because i don't think i've ever let myself not be hydrated because i drink so much water but just to like add to that if we're gonna put like my hypovolemia like kind of under that category but it's not dehydration at all that's not the same thing um saline infusions do really help my fatigue because they help my hypovolemia um so that's like the best thing i could possibly do and like so i guess i could say like hydration does help me 85 people said exercise helped them now i actually did a more specific question and i asked like everybody does exercise help you if so how much and does it actually make it worse for you so here are the results from that so as you can see the results are super duper varied some people say that it helps them other people say it makes it worse um some people say even extremely worse and i also wonder if part of the reason was the way in which i asked the question because i it's not clear if i mean immediately after you exercise or in the long term because i think in the long term a lot of people find that exercise helps their fatigue but then in the short term you really don't feel well afterwards i will say that you know people's reactions to exercise might differ based off the condition that causes their fatigue 80 people said eating i do notice that it helps me i do also get low blood sugar sometimes so i'm sure that like that helps but also i just feel a little boost in energy when i eat something i don't know if it's because it's enjoyable and like your body releases certain types of hormones that are like happy um and make me feel a little bit better um or if the actual like substance itself is making me feel better but i do notice that it makes me feel a little better there were other things that people said were helpful but i didn't want to put put in too many things that um not that many people had mentioned so if like 10 people mentioned it i didn't include it in the list um but if more than that mentioned it i was i included it so here's the full list i'm actually just going to read it in order in case you can't see this um so sleep naps caffeine or coffee laying down hydration exercise in general eating walking electrolytes pacing yourself stretching slash yoga cold temperatures frequent breaks stimulation so like doing stuff we are going to get into like stimulant medications in a moment but that's not this um fresh air stop going out uh listening to music meditation something hot like warm um sugar b vitamins magnesium that's the whole list um of anything people said at least 10 people had to say them so now let's get into medications that work for people um i'm actually gonna lie down for a few minutes first and then we'll get into it also like at this point in this video i'm just like dying i'm a little uh whatever so i'm taking over basically the rest of this because it's literally an hour and a half later not however long i said it was going to be hi sir come here you guys know charlie bucket right he's my boyfriend he's my husband he's my child he's my brother he's my everything i just love this guy a lot of people said that stimulants helped them i think it was around 65 people and i want to make this super clear before going into this next section that i'm not promoting taking stimulants but i'm also not going to keep the data from you if people are saying that this helps them i'm going to share it but stimulants come with a lot of negative things they're not necessarily very good for you and they can cause a lot of really you know unpleasant symptoms and they could also be hard to get prescribed to you for a lot of different reasons including the fact that they're addictive um and so they're not the best medications but sometimes that's what you need and your quality of life matters so much more than like the stigma around medication but there's risks and there's benefit but i'm just saying i'm not promoting taking stimulants but i'm gonna share with you what other people said um just you know i have been on stimulants for a very long time um a very long time um they do help me in a lot of ways but they don't make my fatigue go away but they do help me so i have here around 10 different stimulants and i had people rank at the medications that they say help them for one through five one being it literally did not help me at all and five being it helped me a lot it does not mean that your fatigue went away or that it's magic but rather that it kind of helps the most that you'd expect it to or it just you know really made a huge difference and i took the mean of those values and i did some statistic analyses where i could um line up certain medications against each other to see is one better for fatigue than another and i found that across all the different stimulants there was actually no statistically significant difference between um the effectiveness of these medications against fatigue however i'm still going to go over them like individually because there could be some level of significance to them to the differences in the means but it's not statistically significant with an alpha value of 0.05 i'm just going to run through this really quickly because the video is getting pretty long the first medication i'm going to talk about is adderall 23 people tried it and on average they ranked it a 2.97 out of five this medication is usually used to treat adhd as are a lot of the stimulants that we're about to talk about next ritalin 16 people tried it and on average they ranked it a 2.84 out of five next by vance i actually take five vance 12 people have tried it and i included myself i think in the study um and they ranked it a 2.75 out of five next concerta this medication is really similar to ritalin it tends to be the longer acting form of it i've tried concerto before also um and so nine people tried it and on average they ranked it a 3.22 so you might be thinking that concerta is the best after looking at all of these results and that's certainly possible because it has the highest mean but all of these groups had different numbers of people trying them out and also when i ran a bunch of different tests there really wasn't any statistically significant difference between the means which basically just indicates they are all for the most part equally good at helping fatigue but adhd medications were not the only kind of stimulant that helps people pro vigil or modafinil i think that's how you say it is oftentimes used to treat narcolepsy and some people found that it was helpful for their fatigue i don't know if they were prescribed it for fatigue specifically or um actually i don't know that about any of these it could have just been any of these medications could have been prescribed for other reasons and it just happened to help fatigue but anyway um 20 people have tried it and they ranked it a 2.85 next is middle dream this is really interesting to see that midodrine helps people only eight people said that it helps their fatigue um but still that is very interesting to see and it received a score of 3.38 out of five midodrine is used to increase blood pressure so for the most part people who have low blood pressure or or orthostatic hypertension take this medication and sometimes people with pots who don't have either of those are still prescribed this medication because it can help a bit i've been taking it for a long time and it is a stimulant but it's a bit more specific to the blood vessels than other kinds of stimulants that we were talking about but people did say that it worked pretty well for fatigue and it makes sense because low blood pressure if you're dealing with that can cause so much fatigue sometimes and it does for me among a million other symptoms that are really unpleasant so it makes sense that this could be helpful again i just want to make it super clear i'm not telling people they should go out and take stimulants i just kind of want to inform you and share what others have said and also maybe this could help prompt a good discussion with your doctor or health care provider even if it's not about taking stimulants but rather just about trying to take better control over your fatigue whatever it is whatever you can do it's a really difficult symptom and nothing is going to work for everyone that includes medications but it also includes all of the other things that we spoke about today so anyway if there's anything else that you can think of that is helpful for you i would love to hear it in the comments and i'm sure so many others would as well i ended up literally being i think four different people in this video well no they're all me what i mean is like four different filming sessions i believe so you can see this video was going great i hope it wasn't too confusing though thank you so much for watching and please subscribe if you're not subscribed already but you keep coming back to my videos because it really helps my channel get recommended to new people and i just it would mean a lot to me to continue to grow my channel so i'll see you guys on the next video bye [Music] you
#manage #chronic #fatigue #people #fatigue
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Gurl! You are probably done with YouTube and won’t see this but…
Get comfy! Lounge on a sofa and stretch out or ball up when filming these. Many of the people watching (✋ hi me) understand; so stress less.
What about hydroxychloroquine?
Fatigue is my worst symptom. The fatigue is the symptom that tells me I need to lie down—that overwhelming urge/need that I must lie down all the time or at least be seated in more reclined position.
The whole goal of my work day is to push through as quickly as possible in order to get home and lie down because I’m so fatigued.
wow ! this is top shelf study work! thanks! it should be published in some journal or smtg !
I'd say 6-8 out of 10 between noon and 5pm. Both physical and mental. So exhausted it makes me feel nauseous, even after all the food, rest, and relaxation I could get. Its definitely my most disruptive symptom. Taking B6 every day has been pretty helpful.
So weird, I’m on pain meds for many of the conditions you and other ppl have mentioned, they’re opioids and for some reason they’re my equivalent of stimulants, that just take the edge off the chronic pain but for CFS I couldn’t open my eyes for any length of time if but for opioids. Does anyone have the same?
Darn hpa axis issues (adrenal) and mitochondria issues it’s all mineral rooted but that’s another long conversation. Tissue analysis is very telling
For me, the fatigue is worse than the pain. I can manage my pain somewhat acceptable with meds, but there's nothing that helps with the fatigue. Nothing. It's cruel. I spend 90% of my life in bed nowadays. It's not living, it's existing…
Taking iron supplements helps a ton. Vitamin D too.
My joints pop is my number one annoyance. I get tired especially if i dont do anything. I almost crashed when i was sitting at a desk and i got up quickly to walk around. Caffeine doesnt do anything for me. I go for a run and it helps my fatigue. I do lift weights hoping to strethen my muscles. If i ate fruit it also helps my fatigue.
I went to a place to get insoles. And the chiro epecializes in some of these areas. He asked me questions and he asked about the brighten score. I passed. Now watching this video….interesting
When fatigue takes you deep, DO NOT DRIVE‼️‼️
I’ve seen people who had just told me “I’m fine. I don’t need to pullover and rest” then drive into the stopped car ahead !
When you are fatigued, the brain fog that floats into your brain “fogs “ your ability to judge your own capabilities.
Be mindful. Good luck, fellow sleep deprived humans👋🏼
Thanks for not excluding the discussion of stim use, sometimes it's the only thing left, even if it's not such a great difference
A great point you made about sleep: it's not that it helps with fatigue, it's the lack of it that worsens it.
I'm also a serial drinker of water o/
adrenal insuffiency/addison's is literally the fatigue disease and nobody responded?
the AI erasure is crazy 😭 /jk
I’m on stimulants for ADHD and took one today to try and get stuff done. I went on a lunch date with my girlfriend and stopped to pick up a prescription on the way home and by the time I was at the pharmacy I felt like I could barely hold my head up. I got home and laid down and then fell asleep for 3 hours. It’s wild how powerful the fatigue is even over something as strong as a stimulant. I’d say the fatigue is probably the worst for me followed very very closely by the pain.
such a great, informative video. Thank you!
I get this. Have kidney disease and couldn’t walk. Now that my electrolytes are balanced and I’m not in hospital, I find walking gives me the most energy. I find the more I rest the more tired I get.
I have fibromyalgia and do suffer from fatigue. But at some point, it's something we just learn to live with, in a way. There are days that I just keep all my energy for work. The remainder of the time, it's just bed time, mostly.
Does anyone else get fevers during crashes?
Excellent work 👏🏻👏🏻👏🏻
You are very informative
Are you Asperger as well?
I have chronic pain and GI issues, but fatigue has been the biggest problem for most of my life, at least since my teenage years where it's become most problematic, but there's a report done on me by the preschool educator I was attending that states that at 3yo, I would leave playtime to go nap on my own, which I always found extra funny because it was quirky at the time when my mum would talk about it. Now that I'm finally being evaluated for EDS (at 39) it's making me cringe a little. It's not helped that in French (my native language) , fatigue and tiredness is the same word, so sometimes it's hard to differentiate (even for me) and to explain to people or even doctors that sleeping it off doesn't help. I did CBT specifically for sleep problems, and although I now can go to sleep easier at night, it didn't eliminate the fatigue. I have Chronic Migraine and have been on anti-CGRP injections for about a year and that really helped with the morning fatigue since it stopped my migraines starting during the night/early morning and apparently part of the fatigue was migraine related.
I think I might have POTS and/or orthostatic hypotension, or some other dysautonomia , although it's never been diagnosed. I have high BP, but it will sometime drop really low and I will feel like falling asleep at my desk at work. What helps, in these cases, is to lie down with my feet up for about 20 minutes and then I can keep on with work/activity, but if I try to push through, the rest of my day is just a waste and I can't even make myself dinner at night and every move feels like have weights tied to all my limbs. Because of the hypertension, the sleep specialist I consulted said she couldn't prescribe stimulants, I wonder if the EDS diagnosis would change anything, as in maybe my BP is from dysautonomia and not a cardiovascular problem.
I'm fatigue like 1010 I even struggle to just sit up……day to day…..I have a heart problem we are busy figuring out ..I'm 18..and I found your channel which helps me feel a little better
I would say both fatigue and pain are interchangebly my worse and second to worse symptoms of all my conditions. They are only annoying because we have to work and run errands for things pretty consistently.
💯🤍Raelan Agle has over 150 videos of persons interviewed from all walks of life who have purportedly recovered from Chronic Fatigue Syndrome and other challenges, including her own recovery stories. worth serious investigation?
Brainfog
The 8 she describes was my level 6 so i think its pretty different person to person. So hard to describe and evaluate.
When you get an IV do you get anything special in it? I'm VERY interested in this.
Am I the only one having nightmares where you are at a (previous) job or school and you cannot function at all because of the fatigue? Like you are sitting at your desk and everyone around you is working/taking notes/chitchatting but you can barely even lift your hand, barely register things happening around you, you can't even make a basic phone call but they are expecting you to because you are there to work, but you can't and you don't know how to explain it to them? This has been a recurrent nightmare this year for me, I wake up and start crying …. because it is all so real, the fatigue is real, me not being able to work and be independent is real. and very very painful.
i think there might be a difference of how to handle fatigue in EDS or POTS and the kinda fatigue people with autoimmune problems can get. I think it would be better to have a survey with more different kind of diagnoses, but i know obviously most people following you have similar conditions than you do. But it would be interesting
Ur 8 is probably someone elses 10
That's funny. I find eating is actually worse for me these days than showering etc. I cannot eat or drink more than 150 ml of anything without vomiting anymore. Carbs are just a total nightmare, have developed diabetes II even if I've basically eating a 40-60 g of carbs for the last year (before that way less). And I do not even have EDS, I'm just over 50 and have suffered from this for about 30-40 years at least (I have hyperadrenergic POTS).
Well, there you go, nobody knows…
Its tragic so many young people esp have these awful conditions. .a😢
This! The pain is managable, i can fight trough it, but theres not much i can do to get trough the fatigue. Like, pain is doable, but being unable to move at times because im so fucking exhausted? Yeah not much you can do there- And since on a normal day id judge mine 5 or 6 and cant work or such… like, going out once a week very calmly for a few hours with a friend is enough.
Fatigue and listlessness have ruined my life!
You have explained so much that has happened to me and helped me put the puzzle pieces together. You have been a Godsend. Getting a new primary care doctor soon and hopefully will get the diagnosis needed and be taken more seriously. Almost everything rings bells. Thank you. So much gratitude for you.
I’m so sick of being called lazy due to how much I sleep, kids go to school I go back to bed till 2.45, waste of day but I’m having a huge flare up and am completely exhausted all the time. Still get called lazy even after diganosis
explain flares please
Sometimes it kinda feels fatigue is like:
A LIVING SOUL TRAPPED IN A DEAD BODY,
You're screaming in your head for your body to move, but it doesn't…