Testing Heart Rate Pacing for ME/CFS Energy Management
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- Опубликовано: 9 фев 2025
- Energy pacing for ME/CFS can be a challenge! I tested using heart rate pacing, staying under my anaerobic threshold (AT) to help me to pace better and avoid a post exertional malaise PEM) crash. I did this using my Fitbit as a heart rate monitor over a 6-week period and have had some very positive results! Perhaps I am finally finding a way to manage this tricky ME/CFS!
🌟 I will get an explanatory blog written about this asap in the meantime for info I have the Fitbit versa 2 smart watch amzn.to/3cgqUmi
I use this with 2 free apps from the app store, HR Pacing and Alert Me. Then I calculate and set my anaerobic threshold (See links bellow) on my Fitbit and my watch will vibrate when I go over it.
Heart rate monitoring instructions and information:
⭐solvecfs.org/u...
⭐me-pedia.org/w...
⭐www.healthrisi...
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Hello, I'm Finn, and welcome to my channel! I share first-hand experiences and practical advice on topics of gender transition, LGBTQ+ life, and mental wellbeing, as well as lots of personal updates and day-to-day life. Every video is served with a ton of honesty and a touch of humor! if that sounds like something you'd enjoy, please click subscribe and enable notifications to never miss a video! For instant updates, follow me on my social media accounts! Welcome to the FinnFam!
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Honestly, this is one of the best videos Ive seen on this topic. Very well explained and clear, applicable and relatable. THANK YOUUUU!!
Thank you so much for that lovely feedback! 💜
Thanks for this! I worked this out around three months ago, but i had no idea there was a calculation that could be used. Your formula comes out at 102.6 and
i’d trial and errored my figure to be 100 😂 great vid, you have a new subscriber 🎉
Ah yay! Welcome to the FinnFam! Thanks for subscribing! Im glad this video was helpful
This is a great idea, there are times indeed that outside of our bodies. Yes pushing through is horrible, but when you are a go getter it’s hard to stop.
Thanks so much for sharing. You’ve given me new information that I hadn’t heard before. I have cfs and fibromyalgia
Right on man! This topic is severely underrepresented on RUclips. Great to hear about your pacing success :) But also it sounds like you have POTS on top of your ME/CFS so don't forget this is a complicating factor, especially if you are also medicating for POTS (ie like with beta blockers). It may not mean you are exceeding AT every time your heart rate spikes, because of the POTS. But if you are noticing improvement then it sounds like you should keep doing whatever you're doing. Be well!
Thank you for your kind comment 😊 I'm not sure if l have POTS though some of my symptoms do seem to fit. I'm seeing the ME/CFS specialist soon and am going to ask them to look into it. But yes, so far, by keeping my heart rate lower my fatigue and crashes are less!
@@FinnTheInfinncible how did you go Finn? I’m battling the same beast, trying to pace with HRM but my spikes are crazy. I’m starting to think I have POTS. Did you end up getting diagnosed?
🙏❤️🥰 new long COVID ME/CFS patient here. Trying to figure out pacing with HRV. Shocked at how quickly it happens. Thank you for this.
This is the best explanation I've heard of this! Running a marathon every day! I need to pay more attention to my hr.
Im glad it was helpful! Watching my HR has really helped me to pace beter and to aviid over doing things!
I also started using this method a few days ago. My pacing is very bad, I have a lot of trouble recognizing when it's too much (I only know a few triggers where I know 100%). I'm also 48, but my pulse only shoots up to over 110 or 115 - albeit at every little thing. Sometimes a hearty yawn or stretching is enough. When I get up or when I make myself a cup of tea or when I go to the toilet - I was always far too hectic, but after just a few days I got into the habit of staying MUCH calmer... For years (more like decades), I pushed myself and stayed above my limit almost non-stop, which probably made me ill in the end. I find it really difficult to become and remain calm.
Thank you, I like your pleasant manner.
I’m excited to try this!
I’m also a person who learned to push through my body’s signals a long time ago. I’ve never been able to figure out how to pace. I’m hopeful staying below my anaerobic threshold will help me improve. Thanks, Finn! 😊
I see this was a year ago but I wanted to let you know that I appreciate you putting this information out there. Thank you ❤
Thank you so much for your kind appreciation!
Thank you so much for this advice. I wore my husband's smartwatch today and we were both surprised at my heart rate. I'm now happily shopping for one of my own. I think this will help me to dial in.😊
Im very glad this was helpful, its such a surprise at first isnt it! Id love to hear how you get on!
Excellent - I hadn't understood at all about anaerobic HR - I've been doing it all wrong. I wear a fitbit constantly and see my body under stress but hadn't realised keeping HR low helped. MASSIVE THANK YOU x
Ohhhh!! So chuffed to hear you’re getting there. Knowing your body’s limitations, doesn’t fix it but it reduces your crashes and lets you have a super life. ❤️
Yes exactly this! If l can at least limit the crashes my life will be far more manageable!
@@FinnTheInfinncible ❤️❤️❤️
@@Trickyrickwales and, thank you for signing up for membership! I've sent you a private message on Kofi with all your links to perks! 💜
Thank you so much for this! I’m so tired of the crashing! I am going to try this now. Love you so much!
Fabulous! I'm so glad it helped. Let me know how it goes!
Thank you!! This really helps. I've been trying to figure this out and you made it so simple.
What a lovely comment, thank you! I really hope this helps as much as its helped me! Good luck.
I just found your channel a few days ago (not because of ME/CFS; you were in a list of trans creators) and have only seen a few videos so far but I have to say THANK YOU so much for what you're doing! I know that sharing your experience like this is going to help many people.
I got sick in spring 2020 and was pretty sure it was Covid (no taste/smell + fatigue) but couldn't get tested and so just rested to get better... But two months later I still wasn't better... Of course now more people know about Long Covid, but at the time it was unrecognized and all I could do was rely on the Body Politic Covid support group and the knowledge of the people there. It was amazing to have that, because there were many people there with previous experience with chronic illness, including ME/CFS.
So I got a crash course in dysautonomia, POTS, ME/CFS, and all the things that go with them, and so as my symptoms changed and developed and new ones emerged, I was able to apply things I had learned. One of which was that, if I was doing something, as soon as I started feeling fatigued, I needed to lie down and close my eyes. To give my body a fighting chance in whatever it was doing! Rather than continue to push through and keep at whatever it was (which is my tendency as well, as you say!). The other thing was the anaerobic threshold thing. MAGIC. I got a Fitbit to monitor my oxygen levels while sleeping but the HR function became the main thing. And steps - but in my case I was not going for quantity! (I tried to keep both numbers low, the opposite of what the Fitbit wanted me to do. Sometimes I would be sitting on my couch, on my phone, and suddenly my Fitbit would tell me "Yay! You're earning zone minutes!" And I was like, hmm, not a great thing, actually!! I suspect you can relate.)
Anyway, being able to keep tabs on my HR and trying to keep it under 105 as much as possible was HUGE. Like you, I had a lot of trouble with pacing - too many variables, including the time it took for PEM to kick in, and too many things I couldn't control. But the HR tracking was much more effective.
I have no doubt that all these measures were instrumental in my recovery. I spent 6 months basically on pause (but fortunate in that the rest of the world was also on pause at that time!) and then started getting better. Now I'm functioning almost normally, but I think a lot of it still is thanks to the techniques I learned early on. From wonderful people in the support community, who were willing to share their experiences of chronic illness. So again, THANK YOU for what you're doing!
Lots of love and best wishes as you continue your adventures with Fred! 💪
Ah hello and welcome to the FinnFam! So glad you found me and thank you for your incredibly kind words!
Thank you also for sharing so openly with me. It sounds like a familiar journey to mine, in trying to get to the bottom of whatever the heck was going on!
It's so good to hear you've had success with this method too. To be able to function almost normally would be amazing! I'm hopefulmfor the first time in months that this may be achievable for me too!
It's so funny how we are both using our fit bit for the exact opposite reason it was created! I want badges for walking less, and more slowly! Maybe we should ask them to consider spoonie fitbits!
I too am so grateful for communities of people who share their wisdom and kindness. As humans this is and should be the way, but so often, it's only people who have been through hardship who do this. It's why I share. I'm so grateful for the life I have and so I just want to pay it forward.
Thanks again for your kindness, l look forward to seeing you around the comment section! Feel free to say hello elsewhere too!
Thanks for your reply, Finn. 😁 I'm looking forward to following your story and hope you can find your way back to living the way you want to. It sounds like you have good tools! Though yes, I love your idea about getting Fitbit badges for keeping UNDER our limits - and how great would it be to have them rooting for us??
Wishing you a peaceful day. :)
Thank you for explaining that simply 🎉❤
Im very glad it was simple and helpful!
THANK YOU for this! I've got long-covid with most of my symptoms lining up with ME/CFS. I just reached a new little energy plateau (able to do slightly more than before) and am experiencing my first crash in a long time becasue I'm not sure what my new parameters are. I used my fitbit in the very beginning of my illness to get a baseline of where I was at, but THIS is EXACTLY what I've needed as I am able to tolerate more (light light light) exercise. I am so grateful for you, thank you so much for posting this.
I will say it again, I am so glad you are finding the nuance to this!
You have been such a gift to this world by sharing all your truths. Be it addiction, MH, trans now your chronic illness. You are such a beautiful soul and it was so good to see you.
I am glad this is working and I hope it keeps up and you find your way to conquer it! If not, you will still be amazing Finn!
Oh buddy that's such a lovely message to find this morning, thank you!
My vulnerability is my superpower! I'm glad to have this lovely community of friends to share with, l grow and learn so much and never feel alone.
Sending you a ton of love!
@@FinnTheInfinncible Right back at you! ♥️♥️♥️
Oh yes, I'm right with you with the 'but it's just one more carrot' thing 😞 It's always tempting to push that bit further, but you're doing such a fab job. So happy for you lovely 😊x
Thank you! We must both learn to put down the carrot! xx
That should go on a t-shirt. 😆
@@eshepard8565 lol it's not a bad idea!
@@FinnTheInfinncible might have to buy that one too 😁
Was curious about non-physical energy expenditure, but I found your other video. 😊💚
OH glad you found it! I need to link the two! And do an updated video! Dealing with non physical energy expendeture is hard!
I had a pounding heart with me ME/CFS and it turned out I had an overactive thyroid. Worth getting checked for anyone who has that. It's a simple blood test.
Absolutely. A GP should be running a fatigue panel, which is a list of tests that is done to rule out all other conditions first. I have an under active thyroid, that was discovered first, but for me, even treating that didn't make my other symptoms go away, hence then moving on to an ME diagnosis
Oh the 'just do this quickly' and being out of touch with the signs your body is giving you is so relatable! I really need to find a way to deal with my hypermobility better as I'm so used to pushing through pain and obvious overload that I gave myself tendonitis in my dominant hand two weeks ago. Being in some sort of pain is normal for me and I need to fine-tune my actions to it so I don't end up with awful pain for extended periods of time. Thank you for showing how you keep figuring out what you shouldn't do and what you can do, it's inspirational and relatable 👍
Bless your heart, thank you for those lovely words sweetie. Yes, I now am of the mind that we must be far more gentle with ourselves. We are conditioned to push through, and given messages that not doing so is weak, and this just is not true! Sometimes our limitations cannot be overcome, but instead must be accepted and lived with as we discover new ways to do things we love, or learn to love new things. It isnt easy, but its much less painful than pushing through! This is what I am currently learning and attempting to implement! Much love!
The other day I was walking down the street at a pace so slow that an older man with a walker passed me by.
Thank you for this. I got Covid twice last year and have been struggling with chronic fatigue ever since. And I have the same feeling, where I do so little but I still crash. I'll have to look into one of those watches. Good luck on your journey ❤️
Bless you my friend. I frequently get overtaken by people twice my age! It's hard isn't it? To have our bodies not respond in the way we would like or the way we are used to, to feel so utterly exhausted, it's such a massive adjustment. Practicing self kindness is the most important thing.
I go back and forth between feeling so useless and feeling so relieved that there's an actual explanation for why my body does what it does and it's not just in my head. Do you know who Alex Howard is? I've been following a lot of his videos, it's been helpful.
@@maryjteraji I know exactly what you mean. For years I've had no idea what's wrong with me so it's a relief to finally know but at the same time, on bad days, I can feel overwhelmed with that uselessness feeling and have to stay vigilant for it! I do know Alex Howard. I did his Fatigue challenge and read his book. A lot of his stuff is very useful indeed
@@FinnTheInfinncible we'll get there. I think what's happening to us is important. I think it's no coincidence that at the hight of technological advancement and endless growth made possible only by 24/7 work we see a disease that makes people too tired to keep up.
I ordered a heart rate monitor, it should be here today. I'll let you know how it goes. Take care friend
@@maryjteraji I completely agree with you. Are nervous systems are not designed to work in the way that these modern capital systems drive us. Have you read Laziness does not exist by Devon Price? It's another tool which has helped me emourmously to deal with the feeling of uselessness! Good luck with the heart rate monitor. I'd love to hear how you get on!
Thanks for creating this ❤️ It sounds like you may have POTS - postural orthostatic tachycardia syndrome ie a high heart rate when you stand up, it is a form of orthostatic intolerance and is very common with me/cfs. Although it is usually diagnosed by a cardiologist a lot of cardiologists aren’t aware/won’t test for it. The structure of the heart is fine, and won’t be picked up on a standard ecg as these are only conducted when you are lying down. Simply it is a nervous system dysfunction, the peripheral nervous isn’t sending the right messages that you are standing up/lying down to squeeze the blood vessels and to slow or speed up your heart. Good luck hope you are still going well with your journey.
Thanks so much my friend. I agree with you . All the research I've done points to this, my symptoms fit..however, my GP is very old school....thinks ME is caused by unconscious stress and othostatic intollerance is just because I'm not excercising so he is not refering me for any pots diagnosis. It's frustrating! But.....having now moved home I shall be changing GP practice and getting a new doctor who I'm hoping will be more upmto.date within current thinking!
Thank you so much for your explanation for pacing. It's made it so much easier for me to understand pacing. I'm only a few days in & it has given me some tiny sense of control back. Thank you Finn. 💜
Ah well thats wonderful! Im glad this made sense and Im glad this is working for you. Using a heart rate monitor was a game changer for me
@@FinnTheInfinncible I'm still getting the hang of it. I've been in a shitty patch so I haven't been able to push it at all but I'm sure it'll happen in time. ATM getting up to the loo is getting up over 103 🙄
@@AlexirLife that sounds very familiar! I was shocked at how easily my HR was hitting 100 plus by simple slow movements. Sorry you are having a tough time at the moment 💜
WOW, this is astounding! Just for the heck of it, I checked my heart rate while I sit and watched your video, above 100 the whole time (I've been feeling HORRID lately and have figured out that my new caffeine binge hasn't been doing me ANY favors). I could walk to the other end of my town (a whole 2 or 3 km) last year, and now I can barely walk a few meters without getting pain, exhausted and have to come home and rest. (I have fibro, myofacial pain syndrome and mixed connective tissue disease [have fun looking that up to whoever decides to check it out] )
I'm thankful to whoever suggested this for you (THANK YOU!) and I hope this leads to getting yourself back on track 💪👍
You even LOOK better to be honest (you looked good before of course! 😁 ) And thank you Chris for being so patient and supportive as well, I'm sending you lots of hope and loves!
As always, I love to see you on my screen Finn! Keep up the great progress 🎉👏
Hello my dear friend! Thank you 💜 yes l feel so much better, and l can see the difference in my face in this video! It's incredible! I'm not cured by any means and I'm being realistic, but to feel more like myself and to be able to manage a few things slowly, is such a happy joy!
I think I'm right in that the conditions you have you also can experience post exertional malaise? Where you feel the effect of activity as increased pain and fatigue a day or so after the event?
If so then HR pacing could work for you, because it is ties to how PEM happens. The therory being that going outside the anerobic threshold causes PEM in those with chronic fatigue.
Also have a look at heart rate variability. This is something I am also experimenting with, as a way to get an early warning sign when l might be heading towards a crash. I will update on that soon!
Look after yourself! Much love!
@@FinnTheInfinncible Thank you Finn 🙂
I definitely have something going on that I know that I will crash a day or two after a strenuous day of any kind, whether a planned fun trip out or even some days it's just vacuuming the flat. It felt like there was no rhyme or reason to it, so today I bought a heart rate monitor similar to the one you suggested, am charging it up and going to see what happens!
Right now I'm dealing with not even being able to walk very far (and that's rare for me to deal with) I started to attribute it to "just getting older" but I'm too young to be this bad off (going to be 45 soon) I see a rheumatologist that is monitoring my symptoms, and it would be nice to let her know about my newer symptoms at the very least (could be a "flare up" as I call them so far)
Here in the states they don't really say much about PEM, but the more I look it up, the more it seems like that might be going on. I will keep you posted!
Thank you so much for being here and offering your experiences, and I hope you are doing better and better as time goes on, you deserve to feel good! 👍🥰
Thank you so much for sharing, Finn & I’m happy to hear that this seems to work out for you thus far & that it’s a tool for you 🙏🏼❤️ I can’t understand how it is to live with this illness since I don’t have it myself, but it’s kind of interesting that you made this video right now since I noticed just a couple of days ago that my resting heart rate is through the roof in comparison with before because of stress & anxiety (gosh, that generalised anxiety disorder..😳). Maybe this method could be something to try out for me too. I’m looking forward to see you & hear from you again soon. Take care of yourself ✨🙏🏼 Kind regards/Kim
Hey Kim, sorry for the huge delay! It takes me a while to get around the comments section these days! Yes this is a good point re GAD. In light of my current illhealth, and knowing that its likely too much stress contributed, I would now be giving much different advice to folkx with anxiety. I believe that pushing through anxiety, may well have damage my autonomic nervous system. Now , I still think we do need to challenge anxiety, but in a much more balanced approach. I think using your heart rate could help with this. For example, not letting it get too high, than spending time doing breathing/relaxing/ meditating etc, to lower it again. I ralise I put a lot of effort into pushing through, but not enough effort into calming my system back down. I plan to do a video on this at some point! Thanks for your kindness, much love!
I just found your channel and I love your positive energy.
Thank you so much! Thrilled you found me, welcome to the FinnFam!
Hi Finn.
Wow, hasn't your voice got deeper! I haven't been here for a while. Molly scooter is cool. I'm sorry to hear about your fatigue. Big hugs.
Bless your heart, hello!
Thank you for sharing this. ❤ I am going to try it
Excellent, l hope it helps!
That sounds brilliant Finn. So great that its helping you to understand things and giving you permission to rest. I should really give it a go, but I need to have a look if anyone has info on how to work it if one of my major symptoms is delayed onset of fatigue.
Hi my friend. Yes I get delayed onset of fatigue (PEM - post exertional malaise) This pacing method stops that from happening. If you need some help understanding, feel free to message, there are also some very good clear links to info in the description
I have finally caught up with all your videos, such an amazing journey and so inspirational, I am 42 and would love to start my journey, but very unaccepting family has always stopped me. Take care of yourself 😊
Ah now that is some serious dedication! Thank you for watching and for your kind words! I understand the worries about family, you deserve to be happy though, and be free to ve who you really are
Hi Finn, hank you very much for this video. I decided to try a heart rate monitor again to see if there was anything out there not involving strapping things around my arm shoulder neck legs etc LOL. Anyway it was great finding out that it has become a lot simpler - a strap on your wrist and hopefully that is it!
If I may share a major change in my experience with ME who has had it now for 30+ years I've finally found something that has drastically helped slow my heart rate down and now just want to make sure I'm within my limits most of the day rather than guessing. It's something that sounds so simple and no one has ever suggested it to me but after doing yoga nidra and body scans rather than meditation has helped immensely but what to do to get to another level. After 6 months of making a very conscious effort to breathe purely through my nostrils rarely through my mouth now has done something major. I have reduced speaking either face to face or using the phone now. I hope this helps everyone here. (It also seems to encourage me to breathe properly constantly through the tummy even standing up - breakthrough yes! :D
Hiya! Im glad you enjoyed the video, thanks for watching! Yes heart rate monitoring is much easier now with these smart watches and apps! And meditation, especially breathwork is a tool that is all too easily overlooked by many people. Ive used meditation for years as a way to manage my anxiety and with that, ive managed to stop having panic attacks. I find it does help my heart rate/tachicardia too. I also think pain doesnt help, as we often hold our breat or breathe in more shallow ways when in pain, Im mindful of that on high pain days too. Its all these things combined which hep us manage isnt it? Thanks for sharing!
Oh Finn m'love I am SO SO SO HAPPY that you've found this method to unlock what's going on with your body! (BTW you explained anaerobic respiration just fine 😉)
Two things that blow my mind: firstly, as a non ME/CFS person my cue to knowing my body is under stress is getting out of breath - that's when the body switches to anaerobic respiration, builds up an 'oxygen debt' and then has to 'repay' it when exertion is over (which is why I breathe hard after exertion). If you don't have that cue, no wonder your body is having so many problems 😥
Secondly I am *furious* on your behalf that this isn't being taught if there's good evidence behind it. Monitoring your heartrate for you is no different than me using a peakflow monitor to check my lung function with asthma! As someone with asthma, I can't be told to 'listen to my body' and calm it down; I need hard numerical data of what my lung function is so I can take the reliever inhaler I need, or up my preventative inhalers, and if my peak flow reading drops below a certain level I have to go to A&E as my body isn't getting the oxygen I need. I can't see any difference between me using a peak flow & you using a heart rate monitor.
Love you so much, brother ❤
I absolutely agree! There is still this idea that ME is "yuppie flu" , imagined, exaggerated, or brought on by ourselves.
There is evidence that those with ME/CFS have similar personality types, in being high achievers/hard workers, but that doesn't in turn mean it's our fault. And anyway, this illness is made up of many factors/causes, biological and situational.
Often ME managent techniques focus on behaviour change, and l think this is where the, "you must learn your body" idea comes in. Now whilst I agree that learning your body is a good thing, there are other things that need managing that have nothing to do with behaviour.
For example, there is ever increasing information about the nervous system, the energy production system, being different in those with ME, this isn't something that behaviours change alone can fix!
If there is something broken in our energy production system, and an easy tool to help is to avoid doing any further damage, then of course we should use it!
There's so much evidence about ME/CFS being made visible in how the heart rate behaves, not just AT but also in heart rate variability, and we now have amazing tools, widely available, to help is monitor this, so absolutely it should be taught!
This illness is complex, everyone is individual, so we need as.many ways as possible taught to people. This should be one of them!
Thanks for your lovely comment sweets. Means so much to read both your frustration and happiness on my behalf! X
I have been looking for a sensible and accurate pulse measurement for MECFs for a long time. I cannot recommend almost all heart rate monitors. Instead I recommend heart rate belts. These are accurate thanks to their electrical measurement method. For example the Polar H10. But others are just as suitable. The good thing is that these heart rate belts are much cheaper and more accurate than heart rate monitors.
I've been diagnosed with orthostatic hypotension (basically, standing up makes my blood pressure drop and heart rate go up), but this video is definitely making me think my thoughts. I've avoided "fitness" devices for security reasons and because of my history of disordered eating, but perhaps this would be useful for me to try, absent a diagnosis or a doctor willing to track down What The Fuck Is Up
Sorry you've not had much luck with doctor's. Unfortunately this is common with illness like this. Keep at them! And I too have a history of disordered eating. I just ignore the stuff I don't need and use the device for tracking activity and sleep and health insights. I'm learning so much about monitoring health through the heart rate and pulse. Didn't mention it in this vlog as I'm still learning about it but I'm also tracking my heart rate variability, which can help you to see early of you are getting fatigiue or illness. More updates soon! Thanks for watching and for sharing your experiences 🙂
@@FinnTheInfinncible Thank you for the encouragement, I really appreciate it. I just remembered, if you have the space in your shower, I'd highly recommend a shower chair and a handheld shower head. The cheap ones aren't very pretty, but its revolutionized my ability to shower, which really does make a big difference in how good I feel. Being able to sit while I shower means an extra 30 minutes or so of standing in other areas of my life as well, which is huge on some days
Hi Finn, I´ve missed you. I have similar problems, but my doctor just brushed it off. I hope I´ll soon will get on full health benefits from RA, it got so much wors and I have to quit my job and nobody will give me any other. Just walking my dog makes me so exhausted, anyway. I´ve had my 5 year old grandson over and he told me I should shave, because only stupid man wear long beards. It´s his father influence, but I am so happy to grow my own furr. My sister said I am a crossbreed with a Werwolf. And the top surgery is so close.
Hi my friend, it's lovely to be missed, thank you! Do keep at your doctor, l understand how frustrating and exhausting it is to keep trying and not get answers, it's taken me almost 4 years, but we must be our own advocates!
And you embrace that hair!
@@FinnTheInfinncible Thank you so much, I have fantastic psychiatrist, whom I´ll visit just today, so he´ll figher out something. You just made my day and I love every single hair on my body.
Love you Finn, hope you´ll get better soon an my heart rate will get close to 100. I have the opposite problem.
I've had ME 27 years abd omg the weird heartbeats are the most terrifying. I have a very low resting HR 52 watching TV but i er 100 standing up. However i don't sweat nor gain weight because simple tasks like you say are a massive workout.
Hey Finn! Thanks so much for your content and positive energy. I just discover your channel and can relate a lot. I've been diagnosed in 2 years with so many issues (hEDS, dysautonomia...) and now a specialist suspects I have ME/CFS too, or at least POTS. I've actually been using a heart rate monitor (I had the idea by myself haha!) and I also had the same idea as you, after reading papers on the anaerobic treshold that we should try not to cross.
I notice though, that when walking (for instance) I would jump very fast from an ok heart rate to a too high heart rate. But that happens without much indicators. Or at least, I don't notice them. And my issue is that once I crossed the limit, my heart takes AGES going back to normal. Sometimes it takes 30min or 1h to go back to a decent heart rate (which is still too high for a healthy adult, but well, I'm not healthy haha).
Do you also have the same? Do you have tips?
Cheers and take care!
Hi Finn I used this method for over a year, my Apple Watch took a sh!t after it’s last update about a month ago, I have been looking for a replacement that wasn’t Apple. Which fit bit do you have? Also once you find your Energy Envelope and are settled you should be able to move forward by upping your AT by 1-2 bpm taking note of how you are feeling find balance again for a while and move forward again always listening to your body. If you have to take a step back that is ok, stress is our enemy, we need to look at how our hormones affect your energy levels too. You are doing great . 🙆🏻
I got the charge 4 Fitbit when I got sick (2020) because I needed sleep/oxygen data as well as heart rate. I had trouble with it but did appreciate having it enough that when it broke I went for the next version to replace it. And I like the charge 5 a lot! It's more comfortable and easier to use, and has more features to boot.
Ah thank you so much for this. So good to hear you've had success with this too. What a game changer! And upping is the plan, eventually of course! My Fitbit is the Versa 2. And I have 2 apps downloaded that I have set my AT on and vibrate to warn me when I go over. Fab stuff!
OMG I love your video, I got out of cfs also with HRV. How are you this days?
Thanks so much! Im glad this was helpful! Unfortunately, my ME has progresses, Ive been diagnosed with PoTS as well, which has complicated things. However, using the HRV and pacing using my HR is such a game changer in keeping on top of things, I woulnt manage half of what I do without this tool!
I hope you are ding amazing!
I think another reason this isn't widely taught is the challenge in finding tech that can meet our needs.
Yes that's very true. There is an app called visible and the company behind it are working on a wearable specifically for ME and long COVID, it looks promising!
Thanks for sharing your experience with this technique Finn. Hearing about your elevated pulse when you sit up or stand makes me wonder if you might have POTS? It's fairly common among ME/CFS patients.
Thank you for watching, and for your kind appreciation. 🙏 I have been researching POTS and I think you are right, this could well be what's causing this huge sudden increase on standing, and perhaps the heart symptoms too. I have been referred to the ME specialist service and hopefully they can give me a clearer idea. I will update!
Finn,can u help? I have a Samsung galaxy a22 phone and want to buy a fitbit versa 2 or 3 to get the free pacing apps, but will either of them be compatible with my phone. In middle of a crash and have no-one to help me with this and can,t find the answer. I m not good with tech but hoping my helper can set it up for me. Can u shed any light?
Hi my friend. The apps don't need to be compatible with your phone, only with your Fitbit, which they are. Once you have your Fitbit just go into the Fitbit app store and download the apps you want. My fave is the free HR pacing app which l have running all day on my fit bit, set to vibrate whenever I go over my AT. Hope this helps 🙂
Aww finn thanks so much for explaining it so simply. Hope all going well with you
Do u have the fitbit versa 2 or 3?
@@jeanharris1043 I have the Fitbit versa 3
Thanks Finn all the best
Would you mind sharing which HR monitor you’re having success with, please? I’m a little overwhelmed by all the options 😮💨
Of course! I have the Fitbit versa 2 smart watch this one : amzn.to/3cgqUmi
And then l use a couple of different apps that you download free from the app store, one is called HR pacing and the other is alert me. Then you calculate and set your anaerobic threshold on your Fitbit (or similar heart rate monitor) and the watch will vibrate when you go over it.
I must get the blog written about it this week! I will do my best. I hope this helps in the meantime!
I get the fluttering feeling with mt heart as well 😳
I remember seeing a video from Annie Elainey, where she talked about having a stool in the kitchen so she could sit while cooking. It helped her manage her disabilities, maybe it could help with your fatigue as well, if it takes less energy to sit?
Thank you, yes, I have now acepted that I need these things. I have a perching stool in the kitchen and a shower stoll in the bath, and these have helped so very much
Thanks for this video. It's a technique not talked about enough and one I'm just about to try along with a app to record my effort and energy (the emerge me / cfs app) over the next few weeks. After looking at the watches out there it's a bit hit and miss in terms of knowing which ones will measure accurately and also the best app to use. What watch and app did you go for?
Im so drained, can u just tell me which watch measures HR and will vibrate at whstever hr i choose cos this vivo smart 4 only allows it 100+200 and 40-60. And i need it somewhere probs between 60 and 100. Probs more like 70-90 region. So this watch is now useless. It used to have more options..
Unfortunately the formula you are using is outdated and can cause people to crash even worse. The latest formula from the Workwell foundation is 7 day Resting Heart Rate average + 15. So since my RHR is 60 my Anearoboc threshold is 75. If my HR is above 75 for more than 2 minutes, I lie down until it calms
Oh wow! If l used that I'd never be able to move! I wonder how this works for those of us who have additional heart rate issues such as orthostatic intollerance and PoTS?
I've found the method I've been using, so incredibly helpful. For two main reasons really, well actually loads, but two main ones! It's really helped me to pace better, the formula might be wrong, but it's helped me to slow down and stop more and I have crashed far less since using this. Also, it highlighted that I had a huge problem with my heartrate and now finally I've been diagnosed with orthostatic intollerance and PoTS.
I think the key thing with any of these things, is that that, unless they are done in the lab, they are never going to be perfect and we need to be mindful of them and see them as guidance and one tool of many that can be helpful for us to manage this incredible complex and debilitating condition
Hello, is it still working for you? Ty.
It is indeed! I am in fact now trialling a new device called Visable, and Im going to do an update very soon!
I have fibromyalgia and m.e😫😖 and lately the tired😢😢😢
I've been watching and worried. Do your Drs. know what has brought this on?
ME/CFS has many possible causes so its hard to tell. Its often a combination of things, biologigy and circumstance. A virus or infection can bting it on, as can trauma. Commonly, its a series of things, and then one final one breaks the camels back, so to speak. I think thats the case for me, a few things likely predisposed me to it, then, after a series of infections it came on fully then took a couple of years of me pushing through it, before I crashed completely last year. I will make a vlog about my thoughts on this soon. Bless you for worrying
@@FinnTheInfinncible Thank you for explaining it to me. I will keep you in my thoughts, as always.
@@charliestrickland6194 thank you my dear friend 💜
@@FinnTheInfinncible 💚
Is there q smart watch or device you can suggest?? My birthday is soon 😅😅 so i can ask for that one😂💜
I can indeed! I've actually just started using the visible wearable device. It's a Polar heart rate monitor arm band and a phone app and it's incredible at helping you to pace! I've just done a review which you can watch here ruclips.net/video/J80A3js-paI/видео.html
Which version of the watch is best? Does it show your heart rate at all times, or do you need to press a button to see the numbers?
Hey Finn. I am quite confused. It sounds like you are going over your correct heart rate all the time. So then it would seem that you always need to be living at a very very slow peaceful Pace all the time. I'm not really truly understanding how this works. It seems as if just living your life it's going up all the time just from walking from your living room into your kitchen. So if it's going up every time you have any kind of movement then what is left for you to do? It seems to me the only thing you can do is just lay in bed and rest to keep your heart rate low at the proper thesh hold. I think I'm missing something here. If just doing very mild things shoots up your heart rate then you're left doing VERY LITTLE. Friend, what am I missing? Please help me understand. Thank you❤️🌅
No you are right, there is currently very little I can do without shooting my heart rate up. ME/CFS is incredibly life limiting and leaves me stuck in bed for a vast chunk of time.
The examples I gave were from the beginning of using this method and , by using this method, have improved since then.
It's impossible to stay under my AT all the time, but what it does is alert me to stop and take a rest, and then do things slowly.
So for example, showering is a big issue, now, I shower slowly, and take breaks, sitting on the edge of a bath whenever my heart rate creeps up, this means I avoid my heart rate doing too high
And, when walking, I will stop when my heart rate goes high, or slow down, to keep my heart rate lower.
And, in the kitchen preparing food, I have a stool, so sitting and chopping veg means my heart rate is lower.
This is meaning I can now actually do more things, as long as I do them slowly and with breaks.
And , as my body begins to recovery energy from not over exerting myself , my heart rate isn't going as high so quickly.
Over time, the more I stabilise, I can raise my AT level a bit at a time, and as long as that doesn't cause a crash, just keep raising that heart rate as I make more recovery.
Does this make sense?
@@FinnTheInfinncible Hi Dear Finn. Now it makes absolute
Sense!! Great explanation. Really very concise and understandable. The only thing is It does appear that one would be in bed alot. which I already am most of the time. For instance today I have many errands to do and just thinking about it is so overwhelming and sickening to me, but I have to do them or my life will not work. Hang in there I'm hanging in there and has had this thing for so damn long it's a thing I think I want to do what you do is call it a separate name. You call it Fred I'm going to have to come up with a name. This is no joke it does ruin a life. I love you. Kisses to furfur.
@@kavitadeva bless you. Naming it Fred does help me a lot to think differently about it. I too am in bed a lot of the time. I can manage a bit of computer work if l lie down to do it. I struggle to sit upright for too long before l start to get symptoms, usually heart palpitations. I had to have a little sleep after making this video!
Here is to us both being warriors! Much love xx
🤔But basically exercising less cant be good in the long term. Wouldnt it be better to search for ways to decrease inflamation?
I dont mean to say you shouldnt rest when you need, but never pushing your heartrate higher (for exercise) sounds risky for long term health. I have ME too.
No its not good to not exercise, but its about balance. Managing to exercise, whilst not pushing the body into a crash. Its also not the only thing I am doing to get well, this is just one tool in my arsenal. And, the idea is that over time, as you begin to have more energy and do more, you increase the AT bit by bit, does that make sense?
@@FinnTheInfinncible Yes, that makes sense.
It’s about not crashing because when we crash we don’t usually have the energy to do anything at all pacing is trying to do “normal” things each day without crashing so we can do something the next day and the next. Finding your level (energy envelope) where you don’t have major crashes. Yea was once told everyone gets tired, but CFS/me is not just tired it is a complete loss of function. Pacing correctly helps us to feel normal again. It is just too easy to forget what we have done when we feel great and relapse into a crash.
@@tacka73 Yes, I agree. Im just worried about what happens if we NEVER push our heart rates up high - I think that will make the heart weaker after some time.
That’s the general consensus by the wider medical community, but when your systems don’t work efficiently and are causing higher inflammation, you’re actually doing damage every time you exceed AT and this has been shown to cause deterioration (look up overtraining syndrome, it’s a similar mechanism), so you’re balancing deterioration from running on a broken leg (effectively) or simply missing out on the perceived benefits of exercise. If you have ME, exercise is not a cure (look up DwME, Physios for ME, Workwell Foundation etc). Hope this helps. I’ve made more progress staying below AT than I ever did pushing through or exceeding AT.
I have CFS and my heart rate is 72-78is normal
Yes resting heart rate is normal at that level. What isn't normal, and what l have , is to have a resting heart rate of 120 plus!
@@FinnTheInfinncible r u reverse cfs
@@partharoy6077 I'm not sure what you are asking?
@@FinnTheInfinncible r u reverse cfs
Have you seen a cardiologist? Sounds like you need to be on a beta blocker to slow your heart rate down.
Hi my friend, yes I have had my heart thoroughly investigated. Apart from some ectopic beats and fast pace, it's healthy thank goodness! I may well be put on some medication for my heart once iI see the ME specialist