Activity Intolerance and Pacing - ME/CFS and FM Educational Video Series
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- čas přidán 9. 07. 2024
- Activity intolerance and Post-exertional malaise are often misunderstood aspects of ME/CFS and FM. Learn why physical and cognitive activities can cause symptoms to worsen and how to identify and improve the “threshold” of relapse. Review the importance of pacing and realistic expectation setting that can minimize and even improve symptoms.
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This video is not intended to be a substitute for professional advice, diagnosis, treatment or the medical recommendations of your medical team.
We advise viewers to carefully review and understand the ideas presented and seek the advice of medical providers with any questions you may have as it relates to your patient-specific situation.
Finally a physician who call's it what it is,
" Activity Intolerance", I have called it this for years & been told by my Dr's I was exaggerating. Thank you for ALL you do.
You’re right, it is that, but also SO MUCH MORE!
I’ve been working in construction for almost 2 years, mid 30s, otherwise healthy in the past 20 years, and then about 2 years ago it all went downhill..
a year and 4 months ago, the pain, the exhaustion, the muscle soreness was so bad, I couldn’t work anymore! Plus I got so weak, I was unable to carry tools!
So I had to let my guys go and find a different job while I closed down my business!
Being at home now for almost a year and half, I still have all the symptoms with no improvement, and am as weak as ever, and yeah, that is EVEN when I’m not working and resting all day! LITERALLY!!
So I don’t know how that makes sense, but it’s bad.
It’s definitely more tolerable when I’m resting every day but that PEM kicks in hard when I over do it!!
While activities do cause flare ups in PEM, the problem isn’t the intolerance to the activity, it is something very different that is far more fundamental to the operation of the human body.. Something at the very base of the works..
Question still is, how do you fix it?
This channel is very good!
m.youtube.com/@CFSHealth
In my case I’d a lot of unresolved trauma too.. so therapy..
I know how frightening it is! But there are more and better resources than there used to be. That channel I gave is good as they don’t inundate you with information. Very important for those of us overwhelmed with exhaustion.
If this can be measured then why do we get treated so badly? I've had Fibromyalgia and ME/CFS for 11 years (diagnosed not suffered). I can't get help from any doctor. I have been told I'm too fat, too skinny, needed to exercise/go to the gym, given horrible medication that made me very ill and/or allergic reactions. I've been put down, called names, passed off, told it was all in my head, and much more. I refuse to see doctor's anymore. While this video is very informative and sounds like a great study, will it help us? We are suffering horribly at the hands of these doctor's that just don't believe us and/or don't care at all. I live in constant pain 24/7 I'm extremely fatigued everyday all day. No one cares. I cannot pace because it doesn't matter what I do or how much I rest. I'm always in debt as you put it.
All my love and support for you
😂This is my life, too. Surviving the pain and monstrous fatigue daily takes everything I have and more. I pray all day and night, sleep is very hard…it is 3:04 am and I hurt to badly to sleep…again…as usual. Never has any doctor ever helped me, (save for a TCM Acupuncturist that helped me for a few hours🙏🙌) but they only made me worse and made me feel violated with their outright hostilities and neglect! I was so hoping the Long Covid research would help us, from the beginning I said the symptoms sound just like me, living with ME/CFS and Fibro. But now I think perhaps there is too much money in it and the desire is there to keep dragging out the research, instead of putting forth any helpful information. There should be a different system, to encourage honest and timely results to be published and a plan of action made to get us help, instead of incentivizing dragging out research for paychecks. I want them to be paid well, don’t get me wrong, but I study everyday (it hurts my brain but what else can I do, no one else will help me, and I can watch you tube from my bed) and see the talks about the research showing this and that but still nothing is announced to help after two years of hitting it from every angle? Dr Bates, and Dr Davis have been working on it for years, that should give the new research a lot of info to build on. There are all these tests that show concrete results but insurance and disability still denies people, saying there isn’t proof? Why not? Seems like if there is testable proof for the research then there should be a scalable test to prove it to those who want to deny it. If it is shown in every cell of our body, in our brains and spinal fluid, micro-clots, and more, why isn’t there a test that show that? As for the excercise test, there is no way on earth I could ride a bicycle for a minute let alone 25! I am still recovering from a massive crash from just sitting at the Thanksgiving Table with my kids. All I did was sit and stir the sweet potatoes and talk! But I’d swear that I was just dropped off a three story building, and broke everything, and drug through quicksand, underwater, because that is how I feel since. My energy is non existent, it literally burns my muscles to try and move. My eyes can barely keep open from exhaustion.
My daughter now has Long Covid and she is so much like me now. She is on the road I’ve been on for 30 years. She just had her 25th birthday which had to be super quiet, at her request, because she has tremors and sweats like crazy, has super fatigue and PEM and the hype of a normal birthday is too much for her. She and I both crashed hard that night and after and it has been 9 days, and all we did was sit on the couches and she opened a few presents, that killed me to wrap. She blew out two candles. Her boyfriend made the food and got the cake. Her brother and his wife waited and came on Thanksgiving to celebrate both her birthday and Thanksgiving so it would be easier on her. It totally breaks my heart to see her failing to recover, Feb will be a year for her. She is a shell of her self before Covid. She has so many of my symptoms, now. I see and her the terror, the what if this never gets better, Mom, like you? I know how she feels, and how she must be terrified to need care herself as she has been my caregiver when I need help, for years now. I use to be an athlete and an overachiever that never quit. I took care of everyone and everything. Now I’m lucky if I get to the bathroom. But doctors treat me as if I’m making it up. Those mean doctors never ask themselves why would one make up such a hellish existence that takes everything active and productive from you? All your ideas, creativity, and achievements you hoped to see come to life? Any chance to play with your kids and grandkids? Now with her so sick, I don’t know if she will ever know the joy of being a mother! My daughter has exhausted FMLA, been on unpaid leave for several months so far, which in itself is terrifying and has set me back because stress kills me…and it is unknown if she can ever get back to her high paying job. Do these ignorant, lazy doctors who refuse to educate themselves on current research really think this is a preferred choice, made on purpose? Or we are mentally sick? No, I think we are the strongest mentally out of most people because we haven’t given up.
The list is too long of all the things these “syndromes” have taken from me, and now my daughter. There ought to be a think tank to distill all the studies and research I keep reading about, but see no evidence of helps coming forth, so the money paying for the research and the work put into the research by the brilliant minds out there, is put to the best use. There are so many more now with Long Covid cases. And more to come. The future will be very much impacted good or bad, depending on how this crisis/research is handled.
I pray for everyone suffering to find answers and relief and to regain their strength and their lives! I pray the researchers to find answers and give them willingly and as quickly as is safe to do so, and also for their health and strength, and to know you are so important to our future! And I pray forgiveness is sought for every hard hearted and neglectful doctor, therapist, nurse, family member and friend, who ever doubted that we are begging for help and telling the truth. To those doctors who never cared to get it right…When you feel like your bones are nauseated, your muscles stay contracted like a slab of wood and on fire, FOR YEARS, Decades, when you use to have a photographic memory but now you have to run through 13 words to say “refrigerator” because you can’t remember the name of it, and forget the simplest things because your whole brain feels like it has a bad fever, daily, and you can’t turn over in bed without tears and gasps, when you can’t get up off your bed in time to get to the potty… you can’t breathe because your heart rate is 159 to sit up, but you have to push as hard as you can to get to the bathroom in time and you feel like everything blacking out and you must be having a heart attack, right? It isn’t supposed to hurt like this to barely move, is it? Well…you won’t think it is “made up in your head” any longer, then. And from what I’ve seen it seems like an awful lot of the medical profession now has to live with Long Covid. Wonder how many of them were laughing off ME/CFS/Fibro/Lyme and other post viral illness patients before?
@@NiokaDynamicLaser I just found that you responded. It is 4/21/23. I know it has been 4 months. I apologize. I hope this finds you. I want you to know that I understand. I am with you and can relate 100%. My daughter who is 17 has also been suffering from long covid. She has been admitted to a children's hospital twice in less than 2 months. She has had a migraine for 45 days straight. When she was discharged last Friday, they told me "she would just have to suffer and deal with it and try to function as you do". I was furious! I still am! They told me she had an appointment with the "headache specialist" on May 25. It's on her discharge paperwork. She doesn't. I have had to to fight with the doctors, nurses, patient reps, etc. to get them to understand that she cannot go to school right now. She needs paperwork filled out to get a tutor. They have refused. She also has orthostatic, autonomic issues, and chronic fatigue. On top of that she has autism and she really does not understand. She literally lives in her room now. It absolutely breaks my heart. So believe me when I say I understand what you are saying. I do. Our healthcare system is appalling!
Best video I’ve seen on this! I have long covid, with a lot of symptoms of CFS. I’ve been finding I crash hard for days after hitting a certain point just from walking. This helps me understand what’s going on in my body and how to avoid depleting myself.
Dear all,
Thank you for the video. It would be great if you activate the option of automatic subtitles, in order to have additional support for no native english speakers.
Best wishes
Thank God (or whatever is good, that you believe in) - for this video. Wish it was mandatory viewing in Med. Schools and all teaching hospitals. I wish your center was near me, but I am in NJ. I've been a Zebra for so long, I'm so very tired. I have serious cervical spine damage from a horse accident, but also ME/CFS. I also have many other Dysautonomia symptoms. We need specialists on the East Coast. Please consider opening another Clinic here.
We certainly need more specialist on the east coast. I live in Orlando Florida. I can find no one here . I have fibro and MEfor about 28 years. I am now bedridden. Anyone know of specialist near me. The longest I ca stay up is 3 hours on a good day.
@@sharynhancock431wow sharyn I feel for you! I’m in a similar situation, also lot of pain but manage with about one nap a day.
But can’t work, at all, or really do any activities that I then pay for dearly with interest for days to come.
Managed to cook food today, clean up a bit, did all the dishes and clean up kitchen, feel like I’ve been in a street fight (that I lost) and will probably be taking it easy far a bit..
Interesting that you mention horses..
I had many many accidents on horses and wild cattle growing up!! From workin with cattle and horses at the farm, to professionally taming and training them to bucking wild ones on the weekend, I can’t count my accidents!
But yeah, several fractures, including spine C5, knocked unconscious manny times from landing under the animals etc, broken bones and long recoveries..
Eventually went into construction and started my own business, on to have everything come crashing down with me at age 35.
Severe ME/CFS. From all that active craziness, 3 girls and family, to bedridden, or bed to kitchen to couch and back kind of life, what a change!
Of course I’ve lost all faith in our Health Care System! And am now exploring other options
@@sharynhancock431 - I am so sorry to hear this. No one truly "gets it" unless you walk in our shoes! My story is too long - Severe Mono, A-Typical TB of Lymph w/ 2 years of Chemo. Later in life a Rotational Fall (a 360°) warming up a Jumper on bad footing. I know I'm so lucky to not be paralyzed... let alone alive! However, after 7 months & 3 surgeries - this triggered a massive fall OUT of semi-remission & has degraded every year since. Like you, I am mainly housebound now. Totally s*cks.
@@meals24u - same, except didn't do the dishes! I was miserable all day & pushed beyond my zenith. By now, I know what's to follow... but it is 🎄🎅 after all. The pain is TOOOOO much & they have the same 4 Zealots at the CDC who are RABID Anti-Opiates. Pain affects everyone differently & to pur a 90 MME max is inhumane. Besides ME/CFS & Dysautonomia, I have pretty severe spine injuries from a major horse accident. Opiate Pain medicine (luckily for me) is not an addiction- I just want to be able to move for a few hours a day. Despite all that - Merry Christmas to you & to all here! 🎄🎅🦌🎁☃️🤶🎄
This info is exactly what I needed to know! Working physically full time I’m seeing myself decline.. I just want to know so that I can evaluate my work life.. disability won’t cover any impairment associated to ME/CFS! 😢 THANK YOU SO MUCH FOR THIS WONDERFUL INFO! 👍🙏
Hey, how are you doing after a year??
Still working?
I was wondering because two years and half ago my health declined too, lost strength, tremendous pain and fatigue every time we pushed a long day at work, etc eventually went part time and it’s now been a year and 4 months of ZERO, because I’m so weak, fatigued and sore, all the time, basically NO EXCEPTIONS!
So I was wondering how you are doing these days..
WOW! This is so incredibly helpful!! I have had ME/CFS for 20 years, and you are FINALLY helping me understand why my whole body and mind feel like crap after I exercise. Exercise is supposed to make us healthier, so I force myself to work out several times a week. I guess I need to reconsider that.
How bad was your ME? Like where you bedridden or completely taken over by it, or still able to function as a human being and do some work etc?
I wanna say Dr Bateman should get the Nobel Prize in medicine!! It's so hurtful, frustrating, and harmful for so many doctors to say "that's not a real illness." why do you say that? because women are the ones overwhelmingly stricken with it?! Validation goes a long way! the mental health piece about being believed, and taken seriously, and appropriately treated means so much. In short, it means healing! (without it the opposite is also true, I have found). "Thank you" doesn't even begin to express my gratitude, Dr Bateman!
Very interesting video. Thank you. I have had fibromyalgia for the past 35 years, and used to walk every day and swim 3 - 4 days per week. The past two years I cannot hardly walk at all. My exhaustion is off the charts. I could sleep all day. If I over exert myself even for a short time, my symptoms are exacerbated. Over the last few years my symptoms are totally debilitating and I hardly have any quality of life. My two sons, who are wonderful, just don’t understand what I am going through and I feel like they judge me all the time. They constantly make comments about me not trying hard enough, and think I should be traveling more. I don’t know how to make them understand just how difficult dealing with travel with airports, sensory issues on the plane. Cannot tolerate hot climates and sun. Sleeping in a strange bed. They just downplay my explanations , so I just feel like I am complaining. They are wonderful men, but just don’t understand the constant pain and discomfort I deal with every minute of every day. Thank you so much for this great video. ❤️🇨🇦
makes a lot of sense...I have both and after 20 mins of hydrotherapy I suffered for 2 days after it. Tai Chi is beneficial and doesnt cause PEM.
Thank you for that info about tai chi.
I was thinking to try Tai Chi 👍
I wish someone had given me a diagnosis in the last 23 years since my symptoms started. i def have CFS but have had to diagnose myself. Complicated or caused by Hashimoto's, which in itself has symptoms that mimic CFS. No help at all from Dr's. Told I had a 'bit' of fibro in my shoulders. How can u have a 'bit' of fibro. Thank God for YT content these days to help us. I get the worst PEM , it is just awful, u can do next to nothing activity wise and be in bed for 2 days. people just do not understand how devastating CFS is on every aspect of your life. It is a miserable existance.
Thank you Dr. Bateman, and also 'Thank You' to all the researchers working worldwide - to help find a cure for this devastating disease.
I am constantly at my wits end with ME after 30 plus years!! Watching and listening to you made me think again!!
My issue is, after an exacerbation (all the time) I crash into a crash. Because I have a ‘better’ moment and try to catch up basic stuff and I stay upright and keep going until the red warning light has been on for way too long and down I go again. I’m going to do a tiny thing and stop, clearly the way I’ve been living/existing hasn’t worked at all.
What really frightens me most is I’m quite severe and I can’t feed myself without a crash. Wash = crash etc how do I better manage?
I know the feeling! I’m only two and a half years into it but it’s very severe!
I’m mid 30s, all my life a healthy construction worker, and now this.. Some days I can’t even lift my 1 year old into the car seat of the van because of lack of strength, mind blowing!
Going from martial arts and Gym, on top of construction work, to couch bound, kitchen to bed, takes a tow on the mind too!
Not to mention going from a 6 figure business to Zero income, messes with your identity somehow, on a very fundamental level.
Anyway, it’s been a year and half of no work or activities for me, (other than the daily rough play with my beautiful three daughters when the Battery Levels allow haha)
Obviously in this for the long run 🙌
I’ve had this 26 years & have never properly used pacing. I always seem to use the energy I have & usually go into energy debt trying to finish what I started! Like you, it hasn’t been helpful recovery-wise. Looking back, I now see it so clearly, thanks to this video. I shouldn’t rush to exhaust every bit of energy on a daily basis. When I was a bit more moderate, I never took breaks during an activity. I just pushed thru, especially to please loved ones. Not sure if my athletic mindset was responsible? I’m severe now, so no more projects at all. Anyone seeing this, especially younger folks, please don’t make my mistakes.
Thank you. I'm going to share this with my physical therapist. Right now I am trying to recover from a crash from being pushed beyond my threshold at PT. I have had fibromyalgia for a few years and now long covid for several months. I had a tilt table test today (furthering the crash) and was diagnosed with POTS and another dysautonomia condition. I hope more professionals in the "health care" industry will learn about this.
This is the best idea of "Pacing' I have come across in the years of having this. My Thanks to you once again,
I just hope I do a better job with the pacing of that dollar than the "disability income" , I' still am grateful and feel blessed 🙏 (smile). bless you.💞
This information has been incredibly helpful to me. I was recently diagnosed with Hashimoto’s Thyroiditis and have been experiencing terrible fatigue after exercising. As someone who has always exercised regularly, this has been very discouraging. I believe the information in this presentation will be helpful to me as I try to strike a balance between maintaining fitness while not triggering an autoimmune response.
Thank you SO much for this information.
@ Yaz - try to purchase through work, a disability plan like AFLAC. I wish I did, but just didn't recognize how severely ill I was becoming. Good luck.
Same here - ME/CFS is like the analagy of "boiling a frog 1° at a time" - you just don't realize how ill you're becomming until one day, you're legs feel like they're full of wet cement & you just can't move! Suddenly, you're in a "crash" but don't even know what it is at the time. 😖😳😳🙄🥺😭
Thank you very much for this video. 🙏🏼
Clear. Thank you.
Thank you!
This is very interesting. I understand pacing but sometimes it's better to get back to basics. Thank you
Thank you so much for this video 🙏
Thank you
Excellent explanation of the most important part of managing these complex, chronic illnesses: symptom and activity management! For additional help with learning what your unique energy limits are, and how to pace, check out www.CFIDSselfhelp.org.
How does one use a heart rate monitor to determine one’s anaerobic threshold? Thank you.
Thanks for your video.
I have been dealing with ME/CFS PEM for over 20 years came across a reaction to a medication that improved everything, made me feel like I had no problems.
Was taking Prednisone for a bad skin rash that would not go away Doctor gave me Prednisone 50mg for 2 days then 45 for 2 day and so on till I took 5mg for 2 day. I had a bad reaction to 50mg all the way down to 35mg, when I took 30 - 25mg I felt like everything went away brain fog fatigue pain, everything it was like I had no problem. Then at 20 to 5 mg things started to get bad again slowly, till I did not take anymore and all my problems came flooding back the next few day where the worst of my life losing the feeling of being my ideal normal.
Just wondering if testing with different values of Prednisone would help people with ME/CFS? or is it like my Doctor told me of course you feel better everyone feels better on Prednisone. I told him I did not feel better taking 50mg to 35mg but felt great taking 30mg to 25mg?
Could start at a 30mg to 25mg and taper down to a 5mg maintenance dose help with ME/CFS?
Or could you use what ever dose works for the patient to help recover from a crash?
This just the point of view of one person and a one time dose of prednisone so the data collected was limited.
I am writing this on day 2 of a bad Crash brain fog is at a high level, saying this so if the wording is not good a follow up may provide more info working with about 2% of normal brain function. Everyday brain function is 10% of my normal, 100% is before the ME/CFS destroyed my life.
Undeniable. And does the tortoise really win?
Use of sauna & heat stress in lieu of exercise may be helpful, maintaining cardiovascular & brain health.
Or cold water 💧
@@lauracowan100 - Agree. Sudden or high heat makes me dizzy & feel like I'm going to pass out! Cold water works better for me.
I get a sugar crash for days
More clear, less clinical