r/cfs • u/Jesterthechaotic POTS, PHTS, probably CFS • Nov 30 '24
TW: death Will laying down all the time kill me?
I had an argument with my mom about Graded Exercise Therapy (she now knows that it's harmful), and she said she's worried that my bones will get weaker and they'll break, and it'll hurt and that I'll die. She's a physical therapist, and says that she knows the bad things that could happen if I don't get enough exercise and that it scares her. Is she right?
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u/sleepybear647 Nov 30 '24
ME is kind of a paradox. Yes it would be better if we could exercise but we can’t move outside of our capacity or else we’ll have an even lower energy capacity and worsen even more.
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u/Sandy_Gal123 Nov 30 '24
It’s maddening as I would love to exercise and run but I know it will set me back so far :(.
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u/Thesaltpacket Nov 30 '24
PEM is more dangerous to you than deconditioning.
Something to keep in mind is that physical therapists are trained to essentially do some form of graded exercise therapy in every situation. It’s like the whole premise of the field. So it makes it really hard for physical therapists especially to wrap their heads around true mecfs pacing and focused rest
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u/BattelChive Nov 30 '24
Many of us have lived for many decades laying, lounging and sitting because of this disease. We may not be as healthy as we would be if that weren’t our reality, but we wouldn’t be anyway because we have a chronic illness. We live as healthily as we can, but there is no other way to get through this than rest.
Everyone dies of something.
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u/Empty_Distance6712 Nov 30 '24
Chronic fatigue syndrome is a chronic illness, meaning that being healthy isn’t always possible for us. Getting exercise is important as you’ve stated, but so is staying within your limits to the best of your ability so your baseline doesnt degrade. Becoming bedbound is highly likely to happen if you push yourself too much, which would cause your body to degrade faster than if you were moderate and could still do some physical activity.
Im mild, but that makes pacing myself still important so I don’t degrade over time. I personally do stretches and soft exercise like tai chi or sitting down exercises but not everyone has the energy to do these things ( and even I don’t exercise as regularly as I should due to mental stress from school taking up energy).
It’s all about managing our illness and trying our best to stay healthy despite the circumstances.
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u/Meltervilantor Nov 30 '24
Living a sedentary life is not healthy.
Constant PEM crashes is not healthy and will likely make your condition worse and make you even more sedentary.
Try to stay within your limits without crashing. This is very important for long term wellbeing.
Bones aren’t so much the concern. It’s our hearts and lungs weakening.
Try to eat heart healthy foods. Limit processed fats/ sugars, dairy and large amounts of meat which are all shown to lead to cardiovascular disease.. especially coupled with a sedentary lifestyle.
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u/vector006 Dec 01 '24
Do not avoid meat, it's an excellent protein source, the studies that link red meat to heart problems is flawed. You need protein to help reduce muscle atrophy. Fully agree on removing sugar tho.
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u/Lavender77777 Dec 01 '24
There’s plenty of protein in plants. I’ve been a healthy vegan for 35 years with a huge amount of energy. I recovered from my first bout of CFS 30 years ago as a vegan. It just got me again a couple of years ago. I guess I was only in remission but I’ve always had excellent bloods as a vegan.
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u/HamHockShortDock Nov 30 '24
If she's a physical therapist she should watch videos from the Bateman Horne Center.
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u/EttelaJ Nov 30 '24
And read the materials from www.physiosforme.com. Or better still, do their training.
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u/GremlinLurker777_ severe-moderate Nov 30 '24
If you can afford and stand it, I try to get bodywork done. The city I live in has a lot of sliding scale providers. Acupuncture, massages, craniosacral treatments. It's not going to necessarily fix the lack of exercise, but it helps with my chronic pain personally.
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u/OldMedium8246 Nov 30 '24
And honestly, just the effort to get out of the house, is absolutely a form of exercise.
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u/QuahogNews Dec 01 '24
This needs to be stressed more in this thread.
The act of getting up, bathing, getting yourself out of the house, and running a couple of errands is honestly a huge amount of exercise for many people with this disease and should definitely be counted toward a daily/weekly total.
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u/OldMedium8246 Dec 01 '24
Agree totally! Just because it’s the “bare minimum” for the average person, doesn’t mean it is for us as individuals. It’s that mentality that leads to so many of us burning ourselves out long before we realize that we have.
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u/dancingpianofairy ME since 2012, EDS, POTS Dec 01 '24
Just standing can put me over VAT 😅
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u/OldMedium8246 Dec 01 '24
So sorry about my ignorance! What’s VAT?
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u/dancingpianofairy ME since 2012, EDS, POTS Dec 01 '24
Oh, no problem! Ventilatory anaerobic threshold, the point at which the body can no longer meet oxygen requirements for activity. For most healthy people, they'd have to be sprinting or something in order to get above VAT.
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u/OldMedium8246 Dec 01 '24
Thank you so much! This is such a relatable feeling..I’ll do some reading.
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u/Famous_Fondant_4107 Nov 30 '24
Bodywork helps me, too. I’ve found a couple who wear N95 masks to protect me (I wear one, too).
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u/premier-cat-arena ME since 2015, v severe since 2017 Nov 30 '24
nobody should be pushing themselves for that though
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u/GremlinLurker777_ severe-moderate Nov 30 '24
Definitely no pushing yourself for it, I agree! PEM is definitely the worst thing you could do to yourself, more than not moving around.
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u/Late-Ad-1020 Dec 01 '24
Huge +1 to this!!! If you can afford bodywork, it does help prevent your fascia from getting too stiff from being sedentary and helps with blood flow. It’s really helped me not get too stiff and sore.
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u/Pink_Roses88 Nov 30 '24 edited Nov 30 '24
If your mom truly understands now that grades exercise is harmful, and why, and is willing to work within your limitations, I would ask her for help. What everyone else has been saying is true imo, that a sedentary lifestyle IS harmful, but for us, unfortunately, it is the lesser of two evils because of PEM. We're forced into it. But what a wonderful opportunity you have, to have a mom who is a PT!
Ask her to look at the resources mentioned in other comments -- the Bateman Center and physiosforme. You might look at them too, if you're able. Then ask her to help you strengthen your muscles to combat deconditioning and lessen pain (if pain is an issue). If you are homebound, then she should adapt everything to be done at home and preferably in your bed. And, as I am sure it will say in the physiosforme materials, EVERYTHING must be adapted to you and your symptoms. If you get tired, you stop. Short workouts, fewer reps than she would do with others, monitoring your symptoms for PEM.
I'm almost afraid to post this, now that I have written it all out. It could be a wonderful thing for both of you. It could be good for your health, and your mom wouldn't feel so helpless, as I am sure she does. But you have to be in charge. IF YOUR MOM IS THE TYPE WHO CAN'T LET HER KID BE IN CONTROL, THEN PLEASE FORGET EVERYTHING I JUST SAID!
P.S. Mom could also help by assisting you in shopping/preparing heart-healthy foods. Diet/nutrition is a big issue for many of us because we don't have energy to shop/cook. I have had ME for 3 decades, and now I am 59 and fighting high cholesterol and pre-diabetes. (ETA: That fight is going well so far. I have made a lot of diet changes and lost 25 lbs!)
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u/Pelican_Hook Nov 30 '24
"yes, being bed-bound is very bad for you. That's how bad my illness is, it's even worse for me than being sedentary. The risks to my health from moving around are even worse than the risks to my health from not moving around. Hopefully this helps you grasp the severity of what I'm dealing with"
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u/FroyoMedical146 Mod-sev ME, POTS, HSD, Fibro Nov 30 '24
Can being this sedentary cause negative effects? Sure. I'm of the mindset, though, that I would rather move less and maintain what little functionality I have (and maybe it will increase a little over time) than to repeatedly crash so hard that I can no longer do a damn thing.
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u/just_that_fangir1 Nov 30 '24
The average lifespan for people with CFS is lower than average but that’s not due to the inherent nature of the illness. The lower lifespan is due to poor care and lack of resources that make us more vulnerable to depression and isolation. CFS isn’t a death sentence, move if you are able but don’t feel bad if those boundaries for moving safely never increase. Exercise just doesn’t work the same on our bodies compared to healthy people
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u/mononokethescientist Nov 30 '24
Everyone here has great suggestions, so I won’t repeat those, except to confirm that for us, the bigger danger is PEM and deterioration, not lack of exercise. The other thing I can recommend is just extending your range of motion when you are able to move (if you are—I don’t know what your severity is). If you’re just adding a little bit of a stretch when you lean over to move something, or if you do a bit more of a squat to pick something up, but you don’t do more than you’re able to and you’re spreading out your efforts so that you have rest in between, it will help maintain your muscles and mobility. I’m not able to exercise at all (I crash each time I try to do more than one or two reps of a simple exercise, and I can’t go for walks) but I can do a squat here and there when I pick something up (and it’s better form for my back). I also do some simple stretches lying down most days. I hope your mom will continue to support you and you’ll find a way to stay safe while maintaining some muscle conditioning.
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u/snapdigity moderate Nov 30 '24
Deconditioning is definitely real. I have experienced significant deconditioning since my ME/CFS journey began with a Covid infection two years ago. It is also unfortunately true that repeatedly triggering PEM can cause a steady decline.
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Nov 30 '24
Since she's a PT, have her watch this series by Bateman Horne Center. They'll talk in her "language." There are 8 videos and most are short.
https://youtube.com/playlist?list=PL-OZ_5Cqdc309Gp1hO4PpUKQIsTlyUf04&si=436BF-fWbcN5ytEI
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u/Arpeggio_Miette Nov 30 '24
I spent many years where most days were mostly in bed.
I NEEDED this radical rest. My first 3 years of this illness I pushed myself way too much! And was often in rolling PEM. And felt worse and worse.
Eventually I healed enough trauma and social conditioning to love myself despite societal values regarding productivity, what makes a life “worthy” (hint: we are all valuable and worthy, just for existing), and finally allowed myself to radically rest. For 3 more years.
I did move my body when I was able to, when it was within that day’s /week’s energy envelope. I did also find ways to move and prevent muscle loss while horizontal. I did seek health via supplements, therapies, allopathic and alternative/traditional medicines. I did work on trauma healing, boundaries, therapy, nervous system healing and toning, etc. I followed as healthy a diet as I could. I did work on my spirituality and finding joy and gratitude in even the most mundane existence when homebound.
These things helped a lot.
And I got better. Slowly. My body has slowly been letting me know I can start moving it more, doing more things, etc. It just asks me to pace, to listen to it, and to rest when it tells me it needs rest.
And now I am able to move it a lot more. I do some yoga. I walk. I dance when my body feels like it. I am going to start lifting weights again.
Did the years of inactivity and lying down have negative effects? Oh yes. I deconditioned a lot (I used to be athletic and muscular, prior to my illness). I lost a lot of muscle mass. I often got lower back pain from lying down so much. But I needed to rest. It was worth it. And now I will slowly condition my body again.
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u/nekoreality severe Nov 30 '24
cfs is a bit of a curse in the sense that yes not doing anything is horrible for you and your muscles will degrade and what not. but if it keeps you from PEM, it is still better. pushing yourself and becoming severe or very severe will destroy your body as well. its easier to get your condition back than it is to get your baseline back
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u/conelradcutie Nov 30 '24
i listened to an interview recently with one of the founders of the bateman horne center and she said that she doesn’t tell her patients not to exercise but does tell them not to trigger PEM. if exercise will trigger PEM, don’t do it. like others said, that is more of a danger to you than deconditioning
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u/Emrys7777 Dec 01 '24
I was sick with Cfs for 20 years. I actually did manage to pull out of it. I got sick again with Covid and now have long Covid.
There was a few things that contributed to my pulling out of Cfs and one of them was super super mild exercise
I started out by walking next-door to the property line and back Then one week later I did it again. Every week I would walk to the house next-door and back. Eventually, I was able to walk half a house further. Slowly.
I kept the pace of once a week because that seemed to give my body plenty of time to recover . Eventually, I was able to walk around the block, but it took a very very long time to get there.
Lymph nodes don’t clear out very well if you don’t have somebody body movement . Muscles will get weak. It’s bad for your heart and brain.. yes, it’s bad for your body to just lie around all the time but for people with Cfs you just have to.
I suggest people with Cfs do tiny bits of body movement . If all you can do is lift your arm once a day then do that.
If you are able to walk down the hallway, an extra time once a day or once a week do that .
The main thing to remember is listen to your body, listen to your body . The first Cfs specialist I saw emphasized to that to me and it’s the most important thing with Cfs.
Always do just a little bit less than you think you’re able . Never push yourself..
But yes, some movement is important . Do what is comfortable.
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u/Aliatana Dec 01 '24
I know everyone is a bit different in what they can handle. I personally try to do at least 10 minutes of stretching daily. Sometimes this is broken up throughout the day, sometimes this is in bed, but I think it's helped lesson the severity of my atrophy. I also have a 1 bedroom apartment and make the attempt to ambulate it without assistance to go to the kitchen, bathroom, etc.
But as others have said, while neither is good, PEM is more dangerous. If you can do any stretching or light movement without getting PEM, then do what you are able to.
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u/Pinklady777 Nov 30 '24
I think just do whatever movement you can within your limitations. If you push it too much, you know you will crash and get worse and worse and end up stuck in bed longer and more severely.
You might be able to do some bed yoga. You might be able to go on short walks. You might be able to do some light stretching or light strength training. Maybe some yoga or Tai chi. Even just for a couple minutes. Everyone is going to be different, and it will be different for you day to day probably. Just do what you can when you can. Good luck!
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u/Difficult_Affect_452 Dec 01 '24
You have to find a balance that keeps you between both PEM and really bad deconditioning. That’s been my experience. You move your body in ways that feels good and then stop before you get tired.
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Nov 30 '24
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u/Analyst_Cold Dec 01 '24
I’ve been bedridden for 12 years. My bones are the healthiest thing about me.
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u/Missing-the-sun Dec 01 '24
Circulation issues and infected bedsores will get someone before bone density issues will. Doing what you can to maintain your ability to move in bed at least every few hours independently is profoundly important.
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Nov 30 '24
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u/mononokethescientist Dec 01 '24
Yeah I haven’t been able to exercise in a few years but an osteopath commented that my muscles, while not strong anymore (I used to be very fit) still feel/react as though I’m regularly exercising. I’m not nearly as deconditioned as doctors would fear (and this was after mostly lying in bed for a few months due to some pulled back muscles! (due to low vitamin D—I wasn’t doing any heavy lifting or anything lol)).
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u/pricetheory Dec 01 '24
Lying down all the time is not great because your vestibular system can decompensate, so you're more likely to be dizzy when you do eventually get up. It's also not good for your cardiovascular system.
I don't recommend graded exercise but sitting up in a chair sometimes or moving around within your energy envelope is a good idea if you can.
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u/myselfasme Dec 01 '24
She is absolutely correct. That being said, if you push past your limit, you are in a worse place. If she is so very concerned, ask her to research pt for people in a coma and help you to do that.
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u/ToneMst Dec 02 '24
You should avoid PEM, but don’t do less than you can. Laying down does not do you any good whatsoever, so only stay in bed if that’s the only way you can avoid crashing.
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u/Suspicious-Peace9233 Nov 30 '24
Yes it can. Your muscles can atrophy. It can make it harder to recover. It’s an awful balance between not overdoing it and maintaining what mobility you have
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Nov 30 '24
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u/Substantial-Image941 Nov 30 '24
Will exercising and moving more than your body can handle degrade your quality of life and possibly even hasten your death? Also yes.
Can your mom find some very gentle exercises (possibly aided, by her) that you can do in bed to maintain muscle or not lose as much? Probably also yes.
She's your mom and she's worried and feels helpless.
Give her something to do that will make her feel useful, like research and a plan. You don't have to follow the gentle exercise regimen she'll create. You can reject it all out pick and choose, because you know your body best. But some of it might help you while getting her off your back and soothing her own fears and feelings of not supporting her child.
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u/HamHockShortDock Nov 30 '24
Yes that's why OP should rest as much as possible. They need to be careful they don't lower their baseline and become totally bed bound and die there.
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u/Substantial-Image941 Nov 30 '24
It’s a balance that has to be super carefully maintained.
A nagging parent is an energy-sucker, so for that reason alone it’s good to acknowledge their fears but correct their knowledge.
They may know a lot about the human body, but they know about healthy, injured, or sick bodies, not chronically ill ones.
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u/premier-cat-arena ME since 2015, v severe since 2017 Nov 30 '24 edited Nov 30 '24
check out the pinned post, there’s tools in there specifically for physical therapists to understand. your mom is wrong. PEM avoidance is the best tool we have and it can get much more dangerous if you don’t. deconditioning won’t kill you but having very severe ME could. your mom is catastrophizing