ME/CFS: How to avoid crashes | Wearables?

There are many things we can do to avoid the dreaded crashes that ME/CFS cause. This is just one technique that has worked for me. Please consult with a doctor before trying anything.
Fitbit that I use : amzn.to/2nMdn8k
amzn.to/2nMdn8k... on CPET:
www.shoutoutabo...

[@kikichristensen4891]

Thank you so much for doing these videos. Really helpful. Inspiring. Crash relief/recovery/repair: 1/ stop everything and go to bed 2/ ask for help preparing food 3/ meditation 4/ gratitude practice 5/ nap outside, sunshine, with plenty blankets 6/ use a CES machine for vagus nerve 7/ accupuncture 8/ try not to beat self up about (once again) over exertion and try not to dive too deep back into rabbit hole online. STAY POSITIVE 9/ avoid conflict. or even simple explaining. All interactions must be mild and Happy. I will try the epsom salt - never have used that quantity but sounds promising. Years ago I tried LDN and you’ve inspired me to try it again. Fitbit. Ok. I need to do the CPET and get a baseline.

[@Larsonaut]

kiki christensen did ldn help you this time? it helps me alot

[@nolanbridger2709]

You probably dont care but if you're bored like me during the covid times then you can stream all the new series on Instaflixxer. Been binge watching with my girlfriend recently xD

[@fordbryce7832]

@Nolan Bridger Yup, have been using Instaflixxer for since november myself :D

[@happiness6177]

10.6.24..Off to see some of your current vids now,thanks for your info,positivity & support it means so much😊

[@tordlindgren2123]

That explains the cramps. I was not aware of the decreased recovery time. Thank you.

[@curtisadventures]

Thank you! I have not been understanding what’s been going on with me for a long time and just been crashing and my doctors tested for everything and it’s videos like these that I honestly feel like I’m getting to the root of the problem.

[@neilmiller9635]

This was very helpful. Thank you. I am considering buying a monitoring device because I have still have more crashes than I care for and need a system to control this.

[@KidCity1985]

Your test is probably better then any the professionals have done. Thank you.

[@Disscot]

I agree re the Fitbit. I have one and I always have to check the Fitbit to see how well I have slept. I also got the Fitbit the measure my heart rate. I have persistent tachycardia so it’s a good way of keeping an eye on things.

[@barrysumner3024]

I am 75, last 32 ME. I operate at about 22pc.If onset of crash was food or chemicals, bicarbonate is good. If just over doing it then immediate lay down rest. (Within a few minutes). I have become very sensitive to "onset" and immediate response. Basic I know but vitality true for me. Hope this helps

[@knittingwith_me]

Thank you!! I'll be trying to do an hourly documentation! I've done a day overview documentation. But that gave nada, of course. Great tip!!!

[@utileilnestpas]

I followed the anaerobic threshold with a fitbit HR. Got myself in a bit of trouble as I was too successful. Next up my (undiagnosed at the time but now confirmed) PoTS/OI symptoms got worse. It looks like slowing down also allowed my muscles to decline enough to make the dizziness worse. So now trying to balance limiting exertion with daily bouts of exertion and a few minutes of horizontal exercise. Have referrals to autonomic and cardiac rehab clinics but as per my norm I have already implemented protocols as much as possible (yay Dr Google!)

[@fight4me747]

Yeah, once you start feeling like you can do more, its very addicting and we tend to overdo it at times. Hope you feel better.

[@elainamcreynolds4819]

Me

[@catchappie]

I know this is an older video... Would you still recommend FITBIT or maybe go to Apple 8 Smartwatch. (I have all Mac stuff and I don't need it for communication usage. I just want data.) Currently, I'm measuring individual measuring devices and it's a pain and they aren't very consistent or reliable. I've replace my oximeter and my BP cuff is starting to get flaky. I had an early Fitbit which I liked but I do like the idea of having it be Apple compatible so I can download data since I'm bothering to track. The Apple 8 has sleep data and more. I hope you look at these since in six years, technology has changed. WOULD YOU PLEASE DO A NEW TECHNOLOGY REVIEW?

[@fight4me747]

Hello, I use an apple watch for the most part. But the fitbit works just fine too. I believe I did a follow up video here : kzbin.info/www/bejne/p5ern5mZgrqAias 😀

[@farzinsayadfar8561]

my firend if i crash i rest it up ,dont go out ,stay in ur house some times it takes 3 or 4 days to get to base line as u know when u get to baseline u slowly go out and just walk nothing else state of being no doing .pick up the orange light in every activity even reading or typing.translate the symptoms into words understand what it wants .man dont relapse it keeps u there forever .good luck

[@snappleandcats2209]

Have you ever been bedridden? If so, while you're unwell, what do you do to not go insane from boredom? And to avoid/ alleviate crashes, I personally try to stay warm and avoid being cold like the plague. Cold and winter are my arch nemesis. I also try to pace myself. I try to get a lot of exercise in when I'm not in or nearing a flare up, but if I'm honest, I know when my body is telling me I'm going to induce a flare up/crash. Whether or not I always listen to that signal is unfortunately another story. I also have to keep in mind the fact that, because of my Tourette's syndrome, I can't fully rest and I'm always exercising, so I should be even MORE mindful of how much I do. I tend to WAY overdo things and push myself to my limits. Which would be good if I was healthy XP.

[@fight4me747]

Hello, Thanks for watching and for sharing. When bedridden I do get very bored. I sleep a lot and watch a lot of TV. Thats pretty much all I can do. I live in sunny southern california so for me, the heat is what gets me. I try and avoid the heat.

[@EnglishwithMax]

The boredom has been one of the toughest things for me, and thinking that even when I'm feeling crappy, I should find something "half useful" to do :S. I'm slowly getting away from that mindset though. I've found nice music, audiobooks (nothing heavy) and podcasts are good if you want to avoid screen time. Take care!

[@mickeymorgan]

FitBit sounds good. Thanks

[@susanmarshall8466]

hi, when you are not in a crash or mini crash, do you feel somewhat normal? I never feel normal. I'm caught in push/crash and can't get out of it b/c i simply have to live my life. and the more I push (adrenaline) the worse I get (feels like i'm dying and cells suffocating and just dreadful w/ heart rate sky high and dizziness. etc). so I wonder if some people w/ ME actually do feel normal sometimes. I never do and frankly should be bedridden, but it's too much a prison to me. my question is: which medication did you try that helped with your sleep? my issue is getting the adrenaline to calm down that i've used to live my life as much as I can. if I didn't use adrenaline, i'd be in bed all day and i for one cannot live like this.

[@fight4me747]

I have brief moments of "feeling normal". As long as im real mellow and doing very low impact stuff physically and mentally. Mirtazapine at 7.5mg has helped me sleep a bit better. Its a tough medicine to get off of though.

[@susanmarshall8466]

how long have you been ill? it's so hard with the sleep issue...meds cause more neurological harm, yet not sleeping is dreadful. this is such a prison. would you say you are mild or moderate ME?

[@fight4me747]

I've had ME for almost 14 years now. My ME was severe and have gotten myself to moderate. Still enough to keep me from having a career.

[@susanmarshall8466]

mine was mild, then vaccines pushed me into moderate, then aging and pushing myself due to not getting a diagnosis for 20 yrs pushed me into severe/mod mod/severe depending on what's happening. if i'm honest with myself, i'm severe..but use adrenaline a lot b/c i can't stand the prison of this illness. that's great that you got yourself to moderate.

[@Seraphina3311]

Hi Susan Marshall I see this comment is 7 months old now but I just would like to add something here in case you might see it. In my own individual experience ANY kind of stimulant from coffee to sugar, energy drinks, or even natural stimulant like running on Adrenalin causes immediate and severe crashes for me that can last any amount of time. It feels like the very life force is being ripped, torn, vacuumed painfully from my body on a cellular level. If I avoid things that cause crashes, drink sufficient amounts of water, take my supplements etc I can reach a growing feeling of returned normality. But if I do anything that can cause a crash, primarily through what I consume, I can become a trembling, suffering embodiment of living death. I totally understand your feelings of being trapped in your own body. I’ve often compared my experience to feeling like my soul has been shoved in a jail cell that is my body, and brain fog is what happens when the other prisoners come out looking for something to torment and abuse. I used to break down in fear when I felt it coming on, before receiving a diagnosis and realising this is a long term thing That can not improve whatsoever without my first acknowledging and accepting this fact. Another thing that has changed my condition considerably is something that may sound incredibly odd to anyone not of Christian faith and I implore you to keep an open mind as I briefly mention this. I was not Christian once and would have thought the following statement I am to make the height of Brain washed absurdity, please bare with me and I’ll just put it right out there. My condition was worsened to an immeasurable point, I cannot explain the level of suffering sufficiently. This happened when I began praying and showing an interest in Christ. As an example to communicate my genuine experience, Things even started breaking around me when I prayed. Long story short, became desperate and did something I never thought I’d do, went to a pastor for help. His prayers had a miraculous effect I went from almost complete paralysis to complete mobility in a matter of minutes. It turns out this as this pastor informed me, I had inherited some demonic activity into my life through family soul ties and had reinforced the influence through my own misdemeanours. I’m saying this at the risk of sounding foolish to others but it is the truth and It should be shared. When I learnt to deal with those paranormal things through prayer and a growing understanding in faith my sickness cleared at a phenomenal rate. I now need to focus on physical influences that bring sickness crashing down on my door but the thing is, nothing made it better before. No matter what I did or did not do my conditioned worsened each and every day, I thought I was going to die I got so weak. Now, if I take my supplements, eat vegetables, drink water, get sleep etc etc, I improve continuously and fairly consistently. I hope this assists someone out there. Peace and healing be with you. I can’t thank you enough Johnny for your videos. You have helped me so much. I’m a mother and your contribution to my wellbeing does not just affect me, the help you have provided extends into the lives of my children, husband, family and friends. Thankyou from the bottom of my heart. I pray that you will find complete healing and continue to lead others into lives of health and well being. 🌻

[@cupasoup2]

I like this article from Howard Bloom ME/CFS Self-Care : The Basics LAST UPDATED: 10 DECEMBER 2015 by Howard Bloom The Chronic Fatigue Syndrome/Chronic Fatigue and Immune Dysfunction Syndrome/Myalgic Encephalopathy (CFS/CFIDS/ME) is something each of us must fight in our own way, based on our own unique symptoms and circumstances. But there are some "self-­management" principles that apply to all of us, and that are especially important for newly diag­nosed patients to understand. This article is my attempt to share some of the guidelines I have developed over nine years of personally fighting this disease. By applying them, I have been able to achieve a great deal, despite being largely bedridden. With the following advice, I hope that you too can maximize what you are able to achieve within your own constraints. First, before assuming CFS/CFIDS/ME is the cause of your symptoms, have you been rea­sonably tested to rule out other plausi­ble illnesses? This is a step recommended in all the literature (and required in the Centers for Disease Control and Prevention (CDC) diagnostic criteria), since many other diseases can mimic CFS/CFIDS/ME symp­toms. A word of caution, however. Doctors' visits and tests can demand a great deal of time and energy-commodities that a person with CFIDS lacks. With­draw more than you have in your energy "bank account," and you will make yourself worse. The "overdraft relapse" may not be evident for two days or for two weeks, but you can be sure it will occur-and it can range from somewhat in­creased pain to long-term incapacitation. Thus, the best, most well-intentioned doctor can some­times become your worst enemy-if you don't communicate your limits (how often you can make it to appointments, what times of day you typically feel best, etc.). While there is currently no cure for CFIDS, skillful self-management (and appropriate medical treatment) can al­low you to function optimally within your new, more limited capabilities. The trick- and it is far, far harder than it sounds-is to "know thyself." Recognize that your illness has created new boundaries that you cannot push through-and a new set of rules gov­erning behaviors and activities that you previ­ously took for granted. Many of the truths you must learn about your "new" self will be hard to absorb and harder still to accept. Chronic illness of­ten brings with it a virtual reinvention of iden­tity. As with any loss, you may find that you go through a period of mourning for your lost abili­ties before you can fully face the reality of your current illness. With few exceptions, the basic rule is to learn your new limits and do not ex­ceed them, or you will pay dearly. Think again in terms of having an energy bank account with very small balance. You must become aware of every penny of energy you ex­pend during the day. You have no passbook, so you must determine your balance through contin­uous self-assessment to ensure you do not over­draw your account. As you go through your daily activities, imagine you are wearing a pedometer and keep a weather eye on it. The "mileage" of seemingly simple activities like walking up the stairs, moving from room to room, carrying and lifting-and just sitting up-can add up quickly to more than you can handle. Even talking and listening to others, however pleasur­able, are also extremely taxing to persons with CFIDS. Therefore, to reduce your energy expenditure-to keep the mileage as low as possible on your "pedometer"-get others to fetch things for you (and do other chores for you) when possible. Sit when you do things that you might ordinarily do while standing up, such as brushing your teeth. Take baths rather than showers so you can re­cline. And, when feasible, shift to the bed or a horizontal couch when doing activities you may have traditionally done sitting up. One factor an actual, literal pedometer can't measure, but that a CFS/CFIDS/ME pedometer does, is stress. It is now the most draining experience you face: recognize it is your nemesis. Try to identify the circumstances and people that stress you, and minimize or avoid all you can. And maximize the things that reduce stress for you-whether watching comedy films, listening to mu­sic, or engaging in a low-energy avocation or hobby (yoga and meditation help many patients). If you can, keep a daily record or diary of the way you spend your energy (sitting, walking, talking on the phone, meeting with people, traveling out of the house, etc.). Also keep a record of the medica­tions and dietary supplements you take. Look for patterns in what variables corre­late with "good days" and which with bad. It will not be easy, but over time you will get a sense of the size of the hidden treasury of energy you have, small though it might be, and what affects it. To repeat: You have new limits of a kind you never imagined before. Get to know them well and do not exceed them. Do not challenge your limits by trying to be your "old" self. This temptation hits every CFS/CFIDS/ME victim, but it can carry you to new depths of illness, crushing you with even more severe limitations and surrealistic symptoms than you ever imagined possible. If you are going to get better-and many people do-it will be through skillful self-management, not through challenging your capabilities. If you are a take-­charge, formerly high-achieving person, your new goal is an achievement of a dif­ferent kind-to rein yourself in; to gain a gentle self-discipline over your cravings for your former level of activity. You are still capable of achieving miracles. But you will have to make them happen in new ways. Finally, if you have insomnia, I highly recommend the following idiosyncratic "treatment": Obtain an auto-reverse cas­sette player, and buy or rent books-on-­tape that interest you. (Those available via rental are far superior to those on sale, since the rental versions are unabridged). Place the cassette player next to your pil­low so you can operate the controls in the dark. (Use headphones if you live with others so as not to disturb them). As you lie there sleeplessly, listening to the tape and the narrative will keep you from be­ing driven mad by boredom and frustra­tion. If you're lucky, it will lull you to sleep. At worst, just think how "well-­read" you'll be!

[@SignsAllAround]

Thank you for including this whole article here! Oh how I wish I had had access to it (and gotten an appropriate diagnosis) 25 years ago!

[@SatumainenOlento]

Thank you! This was very good advice! 👍💕💖💕

[@nitelite78]

What version of fitbit do you use? How reliable do you think it's reporting is? I was thinking about doing this a while back but it's quite expensive and I wasn't sure how accurate it is. I am diagnosed with moderate cfs and never feel refreshed after sleep. I do dream a lot so I suspect I am spending more time in REM sleep than usual. I recognise the the lactic threshold issue. Out of interest do you think you have always had a low lactate threshold? Or did this only come on with your ilness? For me I have always had it looking back but not it's much worse. One hypothesis I have is that during REM sleep our brain sends chemical signals to relax our muscles. This is a good thing because otherwise our muscles would act out our dreams and injure ourselves during sleep. However, my thoughts are that their may be an imbalance in these chemicals with people with CFS/ME and the brain continues to pump the chemicals out. I have no idea if this is correct. It just makes some sense to me because it when I wake up that my muscles won't respond and it takes me a long time to be able to move. Then that feeling stays with me through the day. I believe studies in rats have shown these chemicals are called GABA and glycine. I am not sure if there are any human studies on this with relation to CFS/ME.

[@fight4me747]

Hello, I use the fitbit HR. From what i've read its pretty accurate for the price. There are better ones out there but they are twice the price. Before I got sick I was pretty athletic, so it all started after getting sick. I think if you can remember your dreams, you are not in a deep enough sleep to be recovering properly. I remember my dreams too. I made a video about epsom salt baths recently and that has improved my sleep a bit. I would also recommend LDN. That has helped fellow ME'rs sleep better. Hope you are feeling well =)

[@SatumainenOlento]

Hi, Cool theory! I have that same that sometimes my muscles do not respond correctly just when I wake up...so I don't move until they do. I have been always extremely heavy sleeper so I have been putting it down of "travelling back from a dreamland takes longer as I am further there than others", but obviously there needs to be physiological explanation. And yours sounds good! Also, check the alpha, beta etc. conciousness levels, because that helps you understand what are the levels of sleep and meditation (and coma) etc. And sleep cycle better. It is fascinating stuff as you can control your conciousness levels by meditation and breath work when you are wake. (And anybody who is being bedridden with CFS/ME have time to play with their mind to avoid the boredom hahahhaa) Also, there is now many apps which do sleep recording. I am using "sleep as android". Great app!

[@vicstaroonie]

Which Fitbit do you have? I've been looking at the Charge 2 but have to save up the money for it.

[@nitelite78]

Annabelle Elizabeth Did you buy one yet? I am thinking of buying one too. Not sure which is best or how accurate they are in terms of recording sleep.

[@vicstaroonie]

I haven't yet. Still hoping to get the Charge 2 but I just don't have the cash.

[@mad4paws]

Johnny ,you are such a cutie! I love this.I read about pacing thru Bruce Campbell book years ago.but stopped when I got teased to much.Thanks to your videos I have put my Fitbit back on.It really helps me not over do it.thank you so much.I pray you continue to get better and until it is gone.I caught ME when I was 50 ,now I am 64.Sure hope I get better before I die!!! Hugs and keep up the excellent videos.

[@VeganGaymer]

Hey! Do you still use your Fitbit in 2022 to prevent crashes? Which model would you recommend?

[@fight4me747]

Hey there, Im actually going to do a follow up video on the wearables. But in short, I use a apple watch. But the fitbits worked just fine.

[@VeganGaymer]

@@fight4me747 What features do I need to look for? The fitbit is on promo until the end of the month, but I’m afraid it won’t show me what I need related to ME CFS. The heart rate and sleeping options seem pretty good, but the oxygen level is just a % number for the whole night.

[@mickeymorgan]

Thanks. For me, ME/CFS comes with the territory of being Systemically Poisoned by Cobalt from failed Smith & Nephew hip implements. Do you have any research/info on this connection?

[@fight4me747]

I do not mickey. I have heard of people coming down with ME after physical drama's like major surgery.

[@mickeymorgan]

Maybe the trauma of physical surgery, and/or the emotional trauma of familial abandonment over invisible symptoms

[@mickeymorgan]

Feels like PTSD

[@fight4me747]

ME/CFS has biomarkers. No emotional connection. That being said, trauma whether physical or emotional effects the immune system. It lets dormant/opportunistic issues take hold.

[@fight4me747]

PTSD is a mental/emotional issue. ME is not that. Plenty of proof and exclusive symptoms that show that its not mental or emotional in its origin.

[@MindfulSapient]

Hi! Hope you are doing well. Could you tell me what sleep medicine did u take and and how long did you take it?

[@fight4me747]

I took low dose mirtizipine . In low doses its used for sleep. Kinda hard to get off of, so not sure id recommend it..

[@MindfulSapient]

@@fight4me747 hmm right! Hard in what sense exactly? Gives withdrawal symptoms when stopped or just rebound insomnia? Are you still taking it or switched to some natural alternative?

[@fight4me747]

@@MindfulSapient really bad withdrawal when stopped.

[@happiness6177]

So glad to hear you had a clue yourself & sounds like maybe an ok Dr.7yrs ago😊Honestly its just as bad now in 2024!! I feel many Drs just dont want to bother,too hard box.keep well😊

[@mopaditi1737]

Unfortunately, I tried a wearable and The data did not help me avoid crashes nor did it help me predict crashes.

[@fight4me747]

Unfortunately crashes can be caused by so many things. Food, stress, bad sleep etc.

[@mickeymorgan]

I couldn't even get on a treadmill at the cardiologist

[@Ninjamom4]

❤❤❤