How to manage chronic fatigue *according to 800 people with fatigue*
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- čas přidán 25. 01. 2022
- 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:
🧬 www.ehlers-danlos.com/eds-types/
🧬 bit.ly/2N95xTE
MORE INFO ABOUT POTS:
💓 www.potsuk.org/what_is_pots2
❤️ cle.clinic/2p1lByR
MORE INFO ABOUT GASTROPARESIS:
💚 mayocl.in/2BRQTuR
MORE INFO ABOUT MUSCLE TENSION DYSPHONIA:
🤍 bit.ly/2MLUYXI
FTC Disclaimer: This is not a sponsored video.
As an Amazon Associate, I earn from qualifying purchases.
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...
Love this metaphor so much
This is such an apt way to describe it. I often mourn the person I could be if I had the energy.
One thing that really bothers me is when I say I'm feeling really fatigued, and somebody goes "oh same!" ...when they're meaning ~tired~ Not that being tired isn't a valid struggle, but a lot of people I meet use the two words interchangeably
Yeah, I totally feel you! Being tired sucks, but it's not interchangeable with fatigue
I find myself using tired interchangeably even though I do experience fatigue almost 24/7 probably 24/7 just because it is the closest thing I can say to be understood. Everyone hears fatigue and thinks tired anyways I find. It's so much more wearing to try and describe the difference.
A Swedish study of 234 ME/CFS patients meeting the Canadian Consensus Criteria found that 49% of patients had hypermobility and 20% met the criteria for hEDS.
Inflammation from mast cell activation caused by mast cell disorders like Mast cell activation syndrome (MCAS) and Hereditary alpha-tryptasemia (HαT) can be a common cause to hEDS.
Thank you for addressing this topic. Unless you've experienced "chronic fatigue", you really have no idea. Tired doesn't cut it. Exhausted doesn't cover it. It's a debilitating dragging sensation that literally makes you breathless. It HURTS. There have been days I'm so tired I start crying at the thought of having to work or stand up or even get out of bed... but I'm too tired to even cry properly. It's not just "feeling tired". Lying down as in going to bed definitely makes me worse, but lying on a couch semi upright surrounded by pillows so I'm not having to support myself definitely helps. Exercise helps a little bit (situationally) but it can make me feel TERRIBLE the next day. Depends how many spoons I have and how much pain I'm in.
THIS. SO. MUCH. THIS. I started tearing up reading your comment, but I'm too damn tired to actually cry. No one gets it.
Izzy, I'm seriously tempted to send this video not only to my docs, but to my employers. Thank you so much.
Thank you for sharing your experience -- it seems like this resonated with a lot of people. Fatigue when it's bad like this is a horrible symptom, and I'm sorry there are days where you need to push through it like this. I'm glad to could be there to address it. No one understands fatigue until you've dealt with it badly and constantly
I've been hit with PEM after some unplanned activity on Wednesday. And it keeps recurring to me that I feel like my body isn't getting enough oxygen, and my arms always feel very heavy when it gets bad. When it's really bad there's also the sound and light sensitivity etc. It... sucks. :/
I agree, people think that you just feel a little tired, if they only knew how bad the fatigue is. Chronic fatigue effects every aspect of energy production of your whole being, so even thinking too much makes you fatigued.
Chronic fatigue is so bad that it's made me rethink ever having children, I wouldn't want my future children to ever go through this.
I always thought everyone had to deal with fatigue in the way I experienced it. I couldn’t sit down at work without falling asleep, and my feet and legs would ache after every shift. Driving can only be done with caffeine as it’s the only time I sit down long enough to rest my legs and feet and get somewhat comfortable.
For the longest time I just thought I was being lazy, or I didn’t have as much grit as other people. I’d push on through the pain and the fatigue, often times injuries from sports as well, the whole time thinking that other people just handled life better and I just needed to suck it up and not let it show. It wasn’t until two years ago, when my daughters PT mentioned hyper-mobile EDS that it started to make sense. I’m so glad to see a community with support and hopes to make a struggle a little bit easier.
It’s completely debilitating. Even if I’m rested, not stressed, well fed, I still get super fatigued around noon to 4pm. Easily a 6 or 7 on a scale 1-10. It feels like swimming through jello but your mind has the energy to hustle.
I agree that sleep and naps don't help but not getting enough can make it worse. Sometimes I'm so fatigued that even the idea of trying to sleep is too exhausting... and sometimes extra sleep can make me feel worse and more fatigued. People don't understand that, everyone keeps telling me as a new mom to "sleep when the baby sleeps" but they don't understand how fatigue can push you beyond that. You just feel dead
Fatigue is by far the one I struggle with the most. I can smile through the pain. I can slink my way through brain fog. But when that fatigue cranks up. I literally can’t move. Like you stated. I just lay there staring at the wall.
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.
I really believe there is something about drinking warm drinks. I don't know if it is because the warmth of the cup on my hands, the warming up of my internal temperature, or the faster hydration, but the drink doesn't have to have caffeine even.
The trauma of doing forced overtime by my job has caused all the damage to my body. I used to have high energy but not anymore. As months turned to years I woke up one morning and realized my body decided it could no longer take the pain it was so use to. Since then I have never gotten my energy level back up.
Yes, I went downhill after jobs in medical and education. I had to really revaluate!
I feel so much less guilty for being “lazy” right now. Which is wild because I’m in pain and feeling huge fatigue right now, yet still been beating myself up about it
Thats because we all keep getting told by many who know nothing that we are 'faking', malingerers, drug addicts etc..
Oh I know what you mean. I'm so hard on myself for feeling weak and listless.
Same...especially not being able to help others like I used to. But, you didn't CHOOSE this. I hope things are ok for you now.
Lying down is definitely the biggest help for me
Napping if it doesn't turn into sleep usually makes me feel groggy and disorientated but on the other hand at least if I'm unconscious I'm not aware of the discomfort
I would say not eating and incapacitated is a 10!
omg I am so exhausted all the time and no one knows what to do. It's so hard to even work a normal job. I can barely make it through. Weekends are used to just crash. EDS/fibro gal here as well as POTS.
I’m currently dealing with fatigue as well and it’s been hard to manage college. It’s a struggle to get out the door for classes in the morning and stay productive throughout the day. I’d definitely prefer having higher pain but lower fatigue over lower pain and higher fatigue (which is how I’ve been lately) but unfortunately it often goes together!
The pure chaos in this video really shows what fatigue is like. I feel like it takes me so long to get anything done!! Thanks for such a great video!!
"The pure chaos"
Lmao.
The severe fatigue stops me working and exercising. Thanks for the video
I wish there were another word besides fatigue to describe the experience. People think I mean I am tired. It’s closer to being over sedated with medication than tired. So sedated I cannot take a shower, safely drive, maintain regular employment, or even turn myself over in my bed if I’m lying down. I wish I could explain it in a way others can understand. It’s very isolating.
It sure is. I struggle with feeling 80+ in a younger body. It's very hard mentally and emotionally.
As a fellow grad student with EDS and POTS, I immediately saw your survey and was like HA your grad school is showing! So happy you’re using your skills to help us zebras
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 HEDS, POTS, Chronic Migraines, ADHD, and etc. Before I was put on propanolol for my POTS the fatigue was through the roof. Which makes sense when my heart rate was an average of 130 from just standing up and spiking between 150-170+ when doing any activity. That is enough to make anyone exhausted. After meds, it now only spikes to 130 when I am doing a lot of activity. Pain can also make you exhausted alone. So on bad pain days fatigue is much higher. For me caffeine doesn't really do anything for me never has when it comes to fatigue. However, since I have ADHD I think caffeine and stimulants just work differently for me. I do take a stimulant medication for my adhd and it does help keep me from getting severe mental fatigue especially after doing a lot of mentally draining things.
I can't explain how great it feels to know I'm not lazy or milking it. I can push through most days, but honestly if I have more than one thing to do in a day I am spent. My friends and family don't get it. And it's led to years of thinking I am making it up or lack motivation.
For sure. I've been called both rude and lazy more than once! It hurts, but I know people who haven't gone through it just don't get it.
@MJ-gj6mj Exactly, I'm learning to tune them out, not care, validate my own feelings, pay attention to how I feel, and always put myself first in spite of what people say or how they feel about it. They're not in my body, so they can't feel what I feel, so I no longer listen to them because they're not going through this, only I am.
@@PrettyEyesz That's right. It is hard to recondition our thoughts but worth it!
@MJ-gj6mj yes, so true, I totally agree.
the worst is when I'm in class or something and suddenly I feel the need to desperately put my head down and stop fighting it...but my teachers would not react well to that lol
I don’t have EdS Or POTS but I do have chronic fatigue syndrome/Me, Fibromyalgia, Hemiplegic Migraines, and chronic migraines, and Interstitial cystitis of the bladder… and boy the fatigues would rank number one, then the pain, then the nausea. The Low Dose Naltroxen has been a life changer in changing my fatigue from a daily 9 to a daily 2 or 3. I hope to do an update video on this LDN in the coming weeks. Thanks for sharing your content.
How long have you been taking it? I’ve been on the top recommended dose for a few months now and haven’t noticed anything…
I'm so glad to hear you found something that really makes a difference in your fatigue!!!
What dose? How long before you felt improved?
@@paul2019monte I have a video I just put up this week on it. They start super low 1.3mg and then eventually increase to max dose of 4. Something mg.
@@michelleslifeonrepeat I checked out your ldn video. Thank you!
EDS has been brought up as comorbid with autism before and autism is comorbid with ADHD, so I’m wondering about the overlap with ADHD and EDS now, as well as dysautonomia. I know from smaller number of studies, there’s an overlap with fibromyalgia and ADHD, but there really needs to be more research and similar results have been found for the workings of ADHD meds working for people with CVS (but again there’s seemingly so little studies on the topic). Narcolepsy meds and antidepressants also seem to be applied accros the spectrum.
Concerning ADHD, stimulant medication and stigma, I’d like to refer to Jessica from How to ADHD who is a fantastic advocate for the community and has very informative videos such as the following: czcams.com/video/38qpm6VKBFc/video.html
We need to push and really get awareness spread. Everyone knows about cancer, and diabetes or HIV...but EDS or HSD and it's crickets!!! Even the Drs. seem absolutely clueless and unwilling to make any connections.
@@MJ-gj6mjso true diagnosed last here heds asperger's ADHD fybromyalgia CFS at 43 list my mum to severe ms heds to
😂 “why am I getting dizzy” yup that’s POTS for ya. Thanks so much for the great video! Very informative! ❤️
I found out stimulant medications helped me by accident after I was diagnosed with ADHD first and tried them for that. They don't fix my fatigue but they do allow me to do things like drive, watch tv or do a school type course without worrying about falling asleep like I did when I was younger.
do u have cfs?
@@sekischro5093 I was diagnosed with fibromyalgia a couple years ago, and it was suggested I have cfs around 17 years ago but not officially diagnosed. I also have signs of hypermobile spectrum disorder or hypermobile EDS, but don't have a diagnosis of those either. Canadian healthcare isn't great for seeking help as it takes forever to see a specialist, only to not be heard and not followed up with, after a cursory clinical exam and no testing.
I think I might have CFS, so many symptoms. I get really nauseous and I found when I lay down it passes.
CFS is a big effen bummer. I got it at 24 from swimming in a bayou that was polluted. I am now 63 years old and it's still a major part of my life. I Wish we could change the name. CFS doesn't describe the agony of this Crippling disorder.
Myalgic Encephalomyelitis is a much better term as it gives it some type of reality rather than just saying I'm chronically fatigued. I have actually had people say to me, I wish I had chronic fatigue then I can lay in bed and nap and rest all day. Will that isn't what it's about for everyone on here that knows who has it. It is absolutely debilitating. it actually is painful and it ruins your life. Thank you for doing this video.
I hope you don't talk to those people anymore. It's as bad as the ones that say, "hypermobilty is just a fancy way to say you're flexible." SMH The lack of information out there is astonishing!
@@MJ-gj6mj hi, I take it you have EDS. Take good care. Unfortunately I've
Gotten worse.
im 21 rn and have cfs probably from long covid since 2 to 3 years. did u ever reconcile or come to even a tiny bit of understanding with ur parents? i really need some advice on that
@@sekischro5093 Hi being I never mentioned my parents, PLEASE let me know what it is you want to know. Please reply. 🔥
Thank you for acknowledging fatigue!! I'm missing my third consecutive semester of college due to fatigue that nobody can entirely figure out (though EDS and POTS are contributing). It's so often overlooked and more awareness could help make things a little more accessible in the future!
Also, I'm glad to see you posting again! The video wasn't choppy at all to me, you gotta do what you gotta do for your body and if that means four filming sessions then so be it. I appreciate the effort you put into all of this :)
“Why am I getting dizzy? Uuuugh” is honestly such a mood. Randomly dizziness enters the chat and it’s the worst 😠
Stimulants overrode my fatigue entirely (ADHD, taking amphetamine) but because it’s from causes (Eds, dysautonomia, ADHD) it built in the background and I crashed super hard. Hoping to be able to take them a couple of days on a couple off to let me body get the rest it needs. I had a few months of no fatigue OR pain on them which was amazing but I overdid it thinking I was a healthy 27 year old again and boy was I wrong. The crash took months to recover from and my fatigue is back to debilitating
This is me 100%. I have such a hard time because I can’t focus on work and parenting/adulting if I don’t take meds, but I know my body needs breaks 😔
I can’t tell you how incredibly validating when I saw this video. I’ve been suffering from a lot of pain and A LOT of fatigue throughout my life. It was until recently my primary care physician told me it sounds like EDS and sent me to a specialist who I’m going to see tmr. I have SO MUCH self blaming for me can’t be as energetic as others all the time. Even after I knew I very likely have EDS, I saw more about pain, less about fatigue. Knowing so many people also struggle with fatigue, and would also lay down to soothe it, and watching you also need to take frequent breaks in the middle of making the video, it echoes so much and it’s so validating ❤
Omg what specialist? Like a rheum....bc I had the worst experience with them. They didn't look at me for anything! I also asked a sports med Dr. and they literally bent one of my thumbs down and said, "nope you don't meet the criteria." 1 finger??? Even the recommended thumb and pinky thing would be a joke. But many other signs I have if they'd care enough to properly examine me.
Mint helps both my nausea and fatigue: Essential oils rubbed on my neck, Mint ice cram, minty food, mint candles, mint body soap, mint gum and candy…. And smoothies with protein and vitamins help too. Brushing my teeth and splashing water in my face. Playing with my dog. Watching upbeat videos and TV shows.
After experiencing debilitating chronic fatigue in my 20s, (I'm now almost 70) the things that ultimately transformed my health and my life were:
1. Quitting my high profile corporate job.
2. Listening to my body - resting when I needed rest, being on my own schedule (including indulging my night owl tendencies) instead of pushing myself to get up at 5:30am and being on the go all day, then depriving myself of sleep so I could do things in the evening that I actually enjoyed.
3. Transitioning to a HEALTHY organic diet - no processed foods, no convenience foods, no smoking, no pot, no alcohol, no pharmaceuticals.
4. Completely restructuring my life by letting go of obligation based relationships, no longer doing high stress work, eliminating people pleasing and no longer conforming to a set of materialistic based beliefs in order to "fit into" the mainstream culture.
It was tough to make those changes, but it's ultimately what restored my health, saved my life and restored my sanity. After getting through the radical initial transitional adjustments, I no longer had ANY health problems unless I started falling back into the dynamics outlined in #4 above.
Your health challenges are actually a blessing because they're the wake up call for you to be yourself and to live your authentic life.
Good luck and blessings to everyone.
Whilst I agree with the life choices you have made, I am afraid you do not understand what chronic fatigue or dysautonomia mean when the fatigue is physiology produced and not produced by a life style.
My fatigue is for example not being able to sleep much BUT NOT feeling tired (unless it's 3,5 hours for weeks and then I will start crying just for the sheer need of sleep, regular sleep for me is 5,5 hours). I've been vomiting upon extortion (= showering or going grocery shopping, the rest is beyond me really) for 7 years, yet I'm able to work a few hours a week as long as I have my legs up and my blood pressure regulator - the god in my life - agrees with me needing blood in my brain.
But I'm glad you think this is a blessing for me to understand how to live an authentic life.
@@samhartford8677 Yeah, I had similar feelings reading the OP. It's not quite simple enough to eliminate stressors or eat plants & water or whatever they eat.....there's so much involved and it sucks honestly. IT SUCKS. I said it.
@@samhartford8677 I hear you loud and clear, There are channels on
CZcams that preach just like that comment. Sounds great till you wake up and realize, oh yeah I did all that for years, and had no improvement.
When I watch your videos Izzy, I want to keep replying to everything you say, because it’s so relatable! Like I have fibro and I think executive function might frequently be my most debilitating symptom. But executive function problems are probably in part a function of fatigue and brain fog, right? These symptoms have so much overlap it depends on how I’m thinking about them at any given time. Like pain is exhausting to push through, and if I’m too tired to cope, is that pain, or fatigue?
I also agree fatigue is so hard to talk about. If you say you really struggle from it, healthy people will often say “oh yeah, me too! I’m constantly exhausted all the time too!” But it’s not the same. If you are illness free, if you are consistent about doing sleep hygiene stuff can probably drastically improve your fatigue, whereas non-restorative sleep is literally one of fibro’s symptoms. “Fatigue” for us doesn’t mean just “feeling tired” it can literally mean trouble standing or eating, like trouble lifting up your spoon to your mouth. It can mean it’s impossible to stay awake, like you keep falling asleep in the middle of doing things. People who act dismissive, like, “everyone feels exhausted” really don’t understand the severity is on an entirely different level. But those dismissive responses make it very hard to talk about.
I have ADHD, and first tried Concerta, but it gave me severe anxiety without improving any symptoms. Now I take Focalin, a central nervous system stimulant (CNS) and it's helped with focus, executive function, brain fog. But when my fatigue says Go Lay Flat, it doesn't matter what medication or food I've had. On moderate fatigue days, it helps to eat and lay in bed for a few hours.
Does it help pain
The Focalin (Rx Central Nervous System stimulant for ADHD) does temporarily reduce inflammation and pain in my spine, but my fibromyalgia and fatigue pains are eased more by my SNRI duloxetine (Cymbalta) and Fascial Counterstrain physical therapy, which has reduced overall central sensitivity and specific body areas and symptoms. A daily progesterone-only pill has eliminated the extra-bad flare ups caused by my monthly cycle.
Thankyou to do you have heds
I have a connective tissue disorder with hyper mobility and I'm on a years'-long waiting list for testing to see if it's one of the 12+ types of EDS identified so far.
@@gamewrit0058just seen your reply I have heds and awaiting genetic testing to do ADHD meds help your pain much
Wearing two pairs of compression socks makes a HUGE difference, it's one of the most effective things I've found to help my fatigue.
I wear one pair of full length socks, and another pair of the calf sleeves over the full length pair; CEP brand.
Very interesting
Buying some now. Can't hurt
@@annaleekruyer Ok,,,gotta let us know how it goes! I'm considering a pair too!
I haven’t been diagnosed with anything directly with fatigue but I have been like this since childhood and as an adult it seems to be getting worse. It doesn’t feel normal. I’m told “you’re just lazy, everyone is tired” I want to know the truth of what this is. To be honest it could be a lot of things, my mild cerebral palsy (I learned they use three times more energy than normal), ADHD, depression and even being a woman since it’s draining before and after that time. Any way to narrow it down? I don’t want to go to a doctor only for them to play downplay it and not taking it seriously. Sorry for this long rant it’s been on my mind for awhile. Wonderful video 😌
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.
Fatigue feels like someone putting pressure on my shoulders and tipping me over where I can’t sit up. I blame pots
I'm 20 just diagnosed with fibromyalgia and FMF after years of pain when no body believed me
you helped me a lot to believe that it's not only in my head thank you
Can you recommend more channels like yours ?
This video couldn't have come at a better time. Currently struggling to be in school much due to chronic fatigue and chronic pain. Sending love to everyone ❤
I'm sorry to hear you've been struggling with fatigue and school. Those two things are difficult when they come together. Hugs xxx
Thank you so much for all your helpful information about chronic illness. I was diagnosed 12 years ago with refractory celiac disease and just this last week was finally diagnosed with vascular EDS. I’m forever grateful for you💕
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/
Thanks for the excellent video!
My neurologist has a list of three medications he prescribes for fatigue, depending on the patient's other health issues. Modafinil is chosen when there are also sleep issues like delayed sleep phase syndrome, sleep apnea, or narcolepsy. Amantadine has an added benefit of antiviral properties, but it can sometimes cause jitteriness or tachycardia. Pyridostigmine is one he gives for fatigue when gastroparesis or POTS is present, since it can also treat both of those.
My electrocardiologist prescribed me pyridostigmine and it has been an absolute game changer for my fatigue!
Pyridostigmine (Mestinon) has been a huge help for my fatigue as well, plus it's the only prokinetic that's been able to fix my gastroparesis.
Thank you for sharing the information you have collected! It is very interesting to see that others with EDS/POTS experience the same symptoms as me. Fatigue is by far my worst symptom.
I have heds, and my fatigue is the worst at the moment- I my fatigue improves and I can do more, then my pain is worse for having done things lol, but at the moment my fatigue is getting in the way of life so much that I'm not doing the activities that would cause more pain. Interesting to learn others experiences so thanks for the video :)
YES when fatigue improves then comes the pain increases when I do things!! I know exactly what you're talking about. I never seem to know when I've pushed it too far until the next day and I have to pay the piper!
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.
Fatigue has been an issue for me for many years.
When I would talk to a doctor about it they would tell me “oh that’s normal”. It was so frustrating. I can count on one hand how many times I felt rested per se since I was 15 (I’m now 47).
I finally had been diagnosed with POTS, either EDS or Marfan and numerous other issues just a couple years ago.
I do 2L of IV saline every couple days and that does help but it doesn’t last
I'm sorry to hear doctors have been so dismissive about your fatigue. Disabling fatigue is obviously not normal
@@IzzyKDNA nope it sure isn’t!
Using a mobility aid helps with my fatigue! I would say that it helps prevent my fatigue, more than it helps when I’m already feeling fatigued.
Yes, I agree. The PT always frown on it but when I don't use anything and I'm flaring, I can't function. I hope things change and people can just respect other's choices regarding mobility aids ( especially for younger people!)
I have hEDS. My #1 is pain. #2 is fatigue.
I've just started watching this video and you got to the bit where you say you weren't sure how to ask people to rate their symptoms other than using the 1-10 scale. Something I have come across and I find really useful is to ask people in a quantitative way how it affects their day-to-day life. For example 'how many hours a day do you lose to fatigue?' would be a good way of phrasing this question that could be less subjective, although it may still be hard to answer it is still more quantitative than the 1-10 scale. Though obviously, the 1-10 scale is good to compare a person's day-to-day life and also for reporting how they /feel/ about it (for example someone could only lose one hour but feels awful about it compared to someone losing 8 and feeling okay about it) but personally I find this kind of question easier to visualise. Apologies if you address this later just wanted to write this before I forget lmao
Another great video. Thank you 💚
It's great to see you back! I'm sorry it took so many sessions to get through making it! Hope you're doing okay!
You are awesome and did great!!
I'm glad you are back.
such a great, informative video. Thank you!
I'm 67 and came down with Pots last June after surgery. Today, I couldn't do anything . I fell asleep ....I felt better after sugar. I cut out all gluten and sugar but had some today. I'm gaining weight because of Propanaol but can't exercise.
My heart races
Can't sleep
Brain fog
Focus
Sick
Dizziness
Tiredness 😩
Really high blood pressure drops really low in 5 minutes
Dear Jesus, help me
Such an awesome video!! Thank you for all your time and energy - I appreciate it so much.
Brilliant video!! I thank all 4 versions of yourself for it!
I really Enjoy your visit videos Izzy. They are informative and so relatable. As a fellow Potsie, EDS, gastroparesis patient it’s just nice to know there are other patients out there experiencing similar symptoms to mine that I can relate to. Thanks for all your tips!
This video was really interesting and informative I really enjoy and appreciate these sorts of videos that you do. I would really love to see more of them. I would also be super interested to see a survey on what triggered people to get worse or hit their worst or get sick at all whether it's related to a physical injury or emotional stress or life stress or trauma or infection or reaction to medication etcetera
Thank you ❤️🙏
Hi Izzy, I just wanted to say thank you for doing this channel and for being so open about your EDS. I feel like I have learned a plethora of helpful information since I started watching your videos. You have a real knack for explaining things and I feel less alone when I see you talking about the exact same symptoms i experience as a fellow h-EDS'er. I look forward to continuing to watch this channel as a valuable learning resource! Wishing you all the best 💜 Britt
Glad i found your beautiful channel again you are an awesome person so sorry you are struggling so much with fatigue love you so much hope the fatigue gets better interesting video
Very good video.
I’m so grateful for this video! I stumbled across your channel from Aimee Esther right before you posted this. I have ME/CFS and I suspect Fibro/dysautonomia/POTS but I don’t have those diagnoses. I got a lot out of the list of things people say helps them with fatigue. Fatigue is by far my worst symptom and I would say I get close to your 8 ever so often where I literally cannot eat whatever my husband has prepared for me. I would say on avg I’m at a 2/3 relative to the experience at your 8. Sometimes I’ll just crash when my husband comes off work (we have 2 young children) and before I work in the evening (I work from home online). I find that helps the most. I make sure my room is dark, silent and I have my heating pad. Literally not much stimulation just so I can get restored while I crash. I will let myself crash for 20 mins and most of the time I’m good and can carry on 👍 Eating, electrolytes and hydrating can help. I don’t find lying down to be too helpful. It usually makes me feel worse and I usually just lie down while I’m waiting for my opportunity to crash lol And caffeine…as much as I love it, we just don’t have the best relationship 😂 I can only do 1 cup a day in the mornings or else I’m in that cycle of poor sleep. Anyway, I’ll review your list here and continue to try new things! Thank you and take good care 💖
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.
Izzy, OMG. Your channel has been so helpful for me as a newly diagnosed hEDS patient. Especially since care is hard to access, and I've been on waiting lists for months, it's amazing to have some peer support and informational literacy come my way in this time. THANK YOU THANK YOU THANK YOU.
Great video
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
I totally agree with you honey. I’m so sorry your having to go through so much. I’ve had chronic fatigue for over 20 years. I first started with chronic fibromyalgia 20 years ago, which of course comes with chronic fatigue, pain and so much more. I’ve suffered with gastrointestinal issues for about the same time as fibromyalgia and FINALLY!!!! Just been diagnosed with gastroparesis. So, I find resting in bed often really helps might fatigue. All the same things you do really helps such as, eating, drinking, not over doing it for me is a big one. I’ve had to learn to pace myself. I occasionally knowingly over do it, but know I’m going to suffer after but have happy memories. Love 💕 your channel and thank you for sharing your life. Xxxxx ❤
Thank you!! You do such a wonderful job sharing helpful information.
I'm so happy I could be helpful!!!
Thanks for another great video! I really loved the stats and the fact that you highlighted the survey bias and lack of statistical significance. It’s also very relatable that it took you so long to film this fatigue video because of your fatigue: life imitating art. Can’t wait for the next video!
Thank you so much!!
I love your videos. It helps me to better understand my son’s symptoms.
I'm so glad I could play a small role in that, and it's awesome you're trying to understand what it's like for him to have these symptoms
Thank you
Suspect EDS for my 16 year old but was told she didn't have it. I am sure she does. We have been trying to figure her health out for 6 years. Many doctors. Took my 7 year old to 1 doctors 1 time for joint pain and she diagnosed her right away with EDS. So frustrating 😫
Yep....I've had joint pain, severe fatigue, several sports injuries (although many were related to doing regular things like walking & sitting!), GI issues, etc and so on since I was a little kid. Still waiting for an official diagnosis. I would keep pushing for your 16 year old. Get her the help she needs especially while she is under 18 and covered with good insurance. Hope things get/got better for your family!!
Hi!! I was diagnosed with POTS 6 months ago but symptoms for several years. Last week I was diagnosed by a Geneticist with HEDS. It has been one crazy miserable ride. I am 42 and just trying to navigate this. Thank you so much for all of your amazing videos. They have been so helpful for me. Much love!!💗💗
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
Thank you for the work and thought that went into this video. Pain, fatigue and orthostatic hypovolemia related issues are my worst problems, but lots of other stuff that tracks back to HEDS [eg: eyes, dental].
I’d love to see a survey on exercise specifically! I was an athlete throughout school and dealt with some fatigue, and a fair amount of subluxation. In my experience it has been the most significant factor with feeling fatigued. I stopped training and working out about four years ago and since then the fatigue is really effecting me, as well as the frequency of subluxation, increased pain, and decreased muscle tone. It’s been hard trying to train again because I’ve been getting one injury after another. Needless to say I think it may be difficult for us to start exercising, but like you mentioned in the long run it may help with the fatigue (my guess would be that the muscles are more accustomed to the workload after exercising consistently). Thank you for the content! ❤
I'm fatigue like 10\10 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
This is really timely for me as I look ahead to starting a new job that finally makes decent use of my PhD but where my schedule might be more rigid. Unfortunately my specific CPTSD makes stimulants a terrible idea but combinations of the other strategies could help. Thanks for bringing an analytical eye - I’m a qualitative girl myself, but love when my colleagues geek out over a nice p-value.
💚💙
The stats and science in this vid are SO fascinating! Thank you for doing all the amazing work to make this happen! ✨
Yay I'm so glad you enjoyed it and also found this stuff interesting!
Is there any way you could put your work into a paper and get your professor to read it and submit it to journals PCPs / GPs or NPs might read? I've seen less researched articles in some of these type of journals.
During the times that you cannot get out of bed, how do you go to the bathroom? Do you have a bedside commode? Sorry tmi but I’d love to know
Last week, I was officially diagnosed with Sjogren's Syndrome (aka Sicca Syndrome)... which just piles the fatigue, pain and brain fog on top of everything else. It took the eye doc to get me to this diagnosis, since my eyesight has gotten so bad in the past couple of years due to chronic dry eye (along with dry mouth, dry skin, joint pain and brain fog). So, there's another issue I have to deal with and I had never even heard of it before.
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...
I love your videos so much! Putting the science behind everything is so much more help then a lot of the other videos on here. Wish I had a better understanding of the science myself. I’ve mostly been figuring out the patterns, what’s related to what, and because of this you could have these other symptoms and assorted health problems. Being someone with ASD: Aspergers and ADHD, I’ve pretty much decided at this point the genetics are a tangled mess. The list of comorbids is horrendously long. Everything seems to be related to everything else. Genetics and neuroscience have become a real Special Interest for me, especially since finding your videos. I was wondering if you might be able to recommend books/textbooks or other videos, and anything else you can think of that might help someone to learn more about all of these types of subjects? Maybe you could do a book recommendation video sometime? Thank you so much for all the effort you put into these videos.
I agree, so many comorbidities due to defective collagen, but understandable from physiology viewpoint. We do seem to have neurological differences too based on studies of brain.
Brain is collegen to
Ghsd here. Useful tips I'm gonna try.
I have always lightheaded
Great video! I really appreciate everything you've been doing for EDS and how open and honest you are with your delivery of information. I learn so much from you, keep doing your best! :)
Thank you so much! This means a lot
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.
Thank you so much for this video! I have hEDS and fatigue is usually my worst symptom, but the geneticist who diagnosed me said fatigue isn’t usually a major symptom of EDS 😒 My PCP thinks I may have POTS too so I have a cardiology referral. I also am recently diagnosed with ADHD but my psychiatrist didn’t want to start trying any meds until after my cardiology appt because he said stimulants can make POTS worse since they often increase heart rate.
Thankfully the non-stimulant ADHD medications Clonidine and Guanfacine are also commonly prescribed to treat POTS.
Hoping all of your doctor appointments go well, and that you can get on the right track to getting your health issues treated!
Those can all be comorbids of ADHD/Aspergers/autism. Including the EDS, POTS, fatigue, and a whole lot of other things. I’ve found a ton of info on all of this on Pinterest and here on CZcams. It was such a huge relief for me to finally figure out why I was having so many and such a variety of problems. I don’t know if this a why for you, but just something to consider.
@@jenniferdrake585 Check out the Ehlers Danlos Society website and the articles talking about the various comorbidities of EDS. Those articles are very enlightening.
@@jenniferdrake585 What about if ALL those comorbids run in your family? I was never formally diagnosed, but as an adult looking back obviously there were signs no one was paying attention to. I for sure do have those other conditions in my family though. I just want *A* doctor to take me seriously, not treat me for another sports injury!
Caffeine really helps me but it makes my heart rate skyrocket these days and then I feel faint lol
This video is so much interesting and validating about what I live, thank you ! I think about it now because you've mentionned hydratation, but I drink a lot of water, more than the average person and for some reason I always have my mouth dry. For a long time I thought that it was just because of my medicine, but after I did an evaluation for a nutrition exam, we discoverd that I was indeed always really deshydrated and we have absolutely no explanation why. Other people in my family have the same thing but we could find an explanation for them, and I wonder if it something that you've heard about in EDS, if there is something that could be done about it, or if it could be problematic in long time ? Because I talked about it to 3 doctors and one therapist, no one seems to know or care about it xD
Its tragic so many young people esp have these awful conditions. .a😢
I am on modafinil for fatigue and it's helped me a lot.
For more info, I also have sleep apnea and the cpap itself wasn't helping my fatigue so he put me on modafinil as well.
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
I wonder if fatigue is generally seen as less of a “real” symptom (by society and ourselves) is because it’s consciously or unconsciously connected to laziness. And laziness (choosing not to do something) is seen as a huge sin in the face of capitalism. Capitalism needs workers to just keep going and so they doubly demonize the idea of laziness. Just something that came to mind as I was considering why some of us (even those who experience it) downplay fatigue
Hmm..interesting points. I'd say Americans downplay it a lot because of the tie with laziness. We certainly don't have nap times built into our day or the sought after 4 day workweek. People shame others and talk down on them for getting much needed rest. I hope things will improve!