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Chronic Fatigue Syndrome and Exercise: The Dos and Don'ts!
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- čas přidán 30. 07. 2023
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Thank you for watching! Comment your biggest takeaway below! Don’t forgot to download the free trainings above in the description area of this video!
i agree with everything I have heard on this podcast today. Incremental progression, with flexiblity, and working at a modest intensity, and I would add further for every 7 days - have 3 recovery days complete no movement, or not the typical walk or what ever it is you do. I would also add, me personally I use a 5 on 1 off cycle. That is 5 weeks aiming to increase movement, while 1 week zero movement. This was the same model I used as an athlete back in teh day in the 1990s. It works. I also find swimming - a bit of an acitivity which seems to not elicit anything like the symptoms of other forms of exercise. In fact, I had for 5 years swum 1 hour, front crawl at a fairly intense pace at my local pool. I made the error of blending weight again - thinking like I did before CFS, and hey ho - relapsed for best part of 5 years during 2012.
Had CFS/ME since November 1996. Had 3 x 4-5 year cycles during relapses. What helped - yoga, progressive muscle relaxation, mindfulness, use of soothing imagery, sleep hygiene, graded exercise - incremental movement with goals of timed walks on a flat road, with a flexibile approach to this. Mindset of aiming for recovery, over short, intermediate and longer term/process view. Weight training - my most favourite thing in the world is my achillies heel. Every relapse came with doing weights. Prior being ill, aged 26, I could squat 250 kilos for 10 reps, and 150 kilos flat bench press. Im 53 now. I dont do weight any more, but I love it like oxygen. I also am CBT therapist, and is the reason I became a therapist, as NHS in UK were 'beyond non-effective' (polite). Keeping on top of the negative thoughts, and memory of 'what I was and what I lost, and how my life could have turned out if i never had CFS'. That is something I hav never truely cracked. Acceptance is sometimes effective but its an on-going process, I find you dont ever get there with acceptance. New to this channel. Its only one I have found the hosts have the same condition. To be honest I would not have wasted my time if the hosts did not have the condition. Walking the walk and talking the talk.
I also meant to add diet - low carb diet was life changing. I have used this since 2015. I have spent years on learning about low carb. I would recommend Dr Chris Palmer, Harvard Psychiatrist who made connections between cell mitochondria and processed food, in particualr, SUGAR. From my 28 years of being living with this condition I would say a holisit approach is a very important factor. Reduce stress (progrssive muscle relaxation, yoga, use of imagery), remove processed foods - all of them - as these stop your cell mitochondria working (mitochondria make energy but also make serotonin which stabilises your mood, and increases dompamine production among other health benefits). Sugar is more addictive than cocain. 85% of products in your supermarket have added sugars, or terrible fats that synthetic and stop mitochondria working. There are a few high quality low carb people out there - including DR Robert Lustig, Dr Jason Fung, Dr Stephen Phinney, and a good youtube channel: Low Carb Downunder (yes, aussie) and the Diet Doctor. These people are international class medical professionals, and I would encourage anyone with CFS to explore this. I could talk about this aspect for hours.
It's taken me a long time to know the early warning signs of when to tap out. And having the means to just sleep when needed is a huge part of how I manage things. I used to push through because of guilt. Now I sleep when I need to without any guilt at all. Unfortunately it distrupts my sleep patterns, but I don't mind just going with the flow and taking whatever time of day to do what I need to do. Often I'll be super productive after midnight and thats ok.
I just found out recently that the timing of ur bedtime, is actually crucial for good health.. Chinese docs say that if u dont go to bed before 11pm, theres nothing they can do to help u..improve ur health. Thats how important it is.
Ive been going to bed late (for most part btwn 1am and 3am), for a long time...im working on changing thst now..as a priority. Ive actually noticed that if i go to bed latest time esp, my thyroid symptoms get worse and depression.
Hard to do that when you have to be up for work at 5:30AM.
@@Shannon_Robbie
I dont know if i explained clearly...but i meant u need to be in bed by 11pm, and then u can wake whenever...but not before 3am. Its cos ur body is doing its vital repair work during those hrs..(bodyclock).
Just sharing my knowledge, from experience and the Chinese med docs. Maybe u can change the pattern gradually,as i am...it does take time to adjust.
I've had to stop going back, beating myself up thinking about what I could do in the past.
Now I access how I feel several times a day based on the basics of what I've done, how I've slept, what chores I've done etc.
If I've slept badly I know I need to scale it back the day after etc.
This has been great, it reinforces that I'm now taking notice of how my body feels and adapting my day...
So glad it was helpful!
Many of us don’t experience our PEM until a day or more after the event
Yes, mine is 2 or 3 days. It makes it difficult to know what causes what.
This is amazing. I cried a lot throughout this - I guess, because I'm pleased I'm getting it right when I'm getting it right and frustrated when I'm not listening to my body. It also occurred to me that my biggest goal is to be able to play with my son without the fatigue, the guilt that I get just from not being able to be the mum I want to be, weighs heavy on my heart. I have hope now though so onwards and upwards 😊
This is so common! Thanks for sharing! Please reach out to the team if you’d like proper help with this as it isn’t that easy to navigate alone! Email the team at info@cfshealth.com and they can send you the details! Sending love!
My biggest takeaway from this is I can move and i can build myself up ,slowly and gradually at my own comfortable pace and to not do it so intensely makes sense thank you both ❤
Yes! 100%
Accepting the weak me is so heard. Can't seem to move on😢. This video haw been very helpful. It made me realise I'm actually doing well, I'm moving, which exercise for my current ability. Thank you
Also just because one day is hard it's ok tomorrow will be better if I listen to my body and stick to my Baseline thank you ❤
I stop as soon as I get weak and shaky or short of breath... And it doesn't take very long to reach that limit either. 😢
You might want to consider stopping BEFORE you get to the weak, shaky, short of breath stage. If you are always pushing yourself to this point.... how are you going to be able to recouperate to eventually get past that point? As Toby says.... do 50% of what you can do without feeling worse. Be consistent and maintain that level for at least 4 weeks and then reevaluate. The goal is to stop pushing and crashing. If you are taking it to the weak, shaky, short of breath stage.... that is called pushing ! Best Wishes!❤
@@mycreativeheart4159 I'm short of breath going to the bathroom or waking up in the morning
Thank you, now I understand how to progress a little😊
You’re welcome 😊reach out to the team if you want a proper plan at info@cfshealth.com and they’ll send you the details!
I think finding my purpose is definitely crucial! I’m still unfortunately a bit stuck in the ‘what I used to be able to do’ mentality as I was so active before. But even just hearing more positive conversations like this around appropriate fitness for where I’m not at in life, seriously helps to pull me out of that old mindset and into a newer more positive one. Thank you for all the tips, going to be incorporating little things like sitting down again after standing to get in micro movements where I can. All the best to everyone else out these working all of this out too!
Thanks for sharing!
Thank you for this talk , really helpful 💚
Fabulous! Focusing on where I am now vs what I used to do yesterday or last year is so key for handling my actions and choices on the days where I’m at a 2/10 and need to do less to keep from over -pushing and crashing.
I appreciate you both love from Scotland yes i watched this clip 3 times ❤
Thank you Michelle! sending love!
That video was very helpful!
Hi, I just saw this talk and you really hit it on the nail, it's the rate of "perceived exertion"!! I have learned over the past 6 months how to understand my own RPE.
Thank you for these wonderful talks!
You're welcome, Ime!
Could you please do a video related to old age? I’m 87 and I’d like to know what your thoughts are for people my age. Thank you
Same rules apply for recovery no matter what the age! We had a member join our program at the age of 84. Two years later doing great. Gardening, living independently with her husband! From Hawaii! Pretty cool!
This talk has been a real eye opener to me. Explained really well, and after a bad crash I’m taking this info all on board. Thank you so much Toby & team.
Glad it was helpful Joanne! Reach out to the team if you would like a proper plan so you can move forwards without having to feel worse! Just email the team at info@cfshealth.com and they’ll send you the details and next steps!
I'm using these videos to keep positive and learn about my body. I'm not sure if I have cfs or long covid but I do suffer from PEM episodes. I have diabetes type 1 and a vestibular disease. After covid and the vestibular problem my body tolerance for exertion became very low. I never experienced the crashes before and they scare me so much. The line between building up and overdoing it and ending up in bed again seems scarily thin. First step probably is accepting. I keep looking at my friends and all they do, and keep trying to keep up with them. That does not work right now for me.
Toby! You are such a source of strength and inspiration for so many of us! I think I’ve mentioned in other posts that I have been following you since you started. I think your information is so excellent and even though I am not 100%, I attribute a lot of my recovery to about 80 to 90% due to your information. I really enjoyed your interview with Raelan And I’m so happy to see other people finally getting help also. Thank you thank you thank you to you and your amazing staff
Thank you for the follow Raven, and I am honored to serve as a source of strength and inspiration for you and others.
Thank you so much!! My takeaway has been so helpful. I have been doing a lot of what Steph said...small things each day. I wasn't sure what to do I am so pleased. I am getting better each day and don't overdo things now. anymore. ❤
Great Karen!
Thanks for sharing. These insights into the CFS Health approach are really useful. Still don't fully understand RPE but I guess I'll get it eventually. Looking forward to working with Steph to understand appreciate the difference between the CFS approach to movement and the now discredited graded exercise approach to chronic fatigue.
Great tips from Steph. I found it interesting to do micro movements. Repeat every day activity like getting on and off the toilet, or getting milk out of the fridge and putting it back again.
I hadn't thought of doing this as an exercise or movement activity.
Also breaking my exercises into into smaller segments at different times during the day.
I am starting to try to get back to exercises given me by an exercise physiologist but do them just at night. I might try one exercise in the morning and a different one at night.
Ahhh... i get it now! Why i could gradually increase my laps walking at the track, but would crash after being stable for 5 or 6 months. It was partly because i probably increased too quickly ... even though i thought increasing 1 lap every 2 weeks was okay.... in the long run, overall... i never gave my body time to adapt. So by the time i got to 8 laps around the track everyday... i was already working in a deficit. And by repeating that everyday for months... i was allowing no time or energy for adaptation, never mind recovery!👍 Fantastic!!!
I loved the concept of doing a basic movement twice. Getting off the sofa twice, taking something out of the fridge twice. This is a great, easy, non-stressful way to increase your movement. And having the repitition attached to a movement, makes it really easy to create consistency of it as a habit. I can do this! Makes me excited.👍
Thankyou both so very very much. Everything said resonates perfectly with my CFS experience. The "going to the fridge twice to get the milk" was a brilliant suggestion to just add some incidental extra movement into my day. I think because I've just been to the fridge, doing it a second time is so do-able ...and a little crazy, so it makes me laugh😄 This extra little laugh is also a big upper, or positive vibe. Same with "getting up and down off my recliner chair twice" haha! Brilliant, and so do-able, because I just did it!!😂 Just knowing a place to start, is comforting. It keeps my goal to improve alive.
Thankyou both xx Warmest love to all the on line coaches, and to all my fellow CFS battlers out there👍🥰👍
Very helpful video, thanks so much
Glad it was helpful!
Takeaway: Enjoy exercise, think about your why and relate it to how you are feeling right now- not yesterday or how you want to be feeling.
… but I guess some exercise is necessary that’s a bit boring like stretching? But I can make that more fun by listening to music I guess! I love outdoors so walking is my go to.
Thanks Steph and Toby!
Pleasure!
After having a high RPE morning, this was a great reminder than lying in bed with my tea is exactly what I should be doing now. Thank you so much for these pod casts.
You're welcome Jane!
I used to be a PowerlIfter before I got Long Covid Fatigue and PEMS. We used to use RPE for our lifting to determine how many reps or what weight to lift. It was known as a more intermediate-advanced technique because it's difficult for beginners to know when they're overdoing it. I definitely struggled with this last summer when I overdid it and caused a setback that I'm still suffering from a year later. Unfortunately I have to avoid the weights now and only go to work and for a short 10 minute walk on wknds. 15:42
It would be interesting to hear your story. How do you rehab? Do you want to lift again in the future? I have Long COVID too and i want nothing more than to exercise in the gym again. Its difficult not to look Back but i am doing my best, hoping Go recover fully so i can exercise in the gym in a few months or years
@@alias701 I would love to get back to lifting again! It was a huge part of my life and my identity so it's been difficult not being able to do it. But I'm trying to think more positively and not get into the "poor me" mindset that a lot of us get stuck in. We have a right to feel sorry for ourselves of course but it's not helpful long term.
My rehab has been to cut out caffeine and alcohol. I have a fairly strict bedtime and wake time. I try to get morning light and evening light for 10 mins a day to help with sleep to correct circadian rhythm. I use several vitamins and minerals but the only one I think that is actually helping is Magnesium Bisglycinate.
My biggest take-a-way watching this is I have done 5 months in the programme before being ready for exercise. Moral= it's never too late 😊
So helpful! My biggest learning is to be okay with where I am at right now. Also not to expect to be where I was.
Thank you Anastasia!
My Baseline is improving small steps 😊
Great to hear Michelle!
Thanks, I finally get RPE now. I couldn't understand why I had a setback recently when I was doing less than I had been the week before. But I wasn't thinking how am I today given that my sleep had been bad. From now on I'll ask myself how much is a 3 for me today?
Love it!
How do you manage when you’ve been and are a carer?
If I don’t ‘overdo’ things ie do things for me as well as the person I’m caring for my life would only be that of carer. Surely this is a reality for many, many people who have dependents? I simply don’t have the luxury of my life being more balanced.
My insight is the battery picture to describe state of exhaustion as base for Design my day
Is Steph’s services included in the program or is it extra?
It's included in the program
If one can, Dry brushing before a shower is good for lymphatic system movement.
Excellent discussion here that most in the CFS healing space don’t get into. Doing nothing won’t help but finding a safe movement plan is so key.
Absolutely!
Is this the same Toby for musicians, like playing an instrument for work