Bedbound: muscles loss? Exercises? Tips? Let’s discuss :)

[Tella]

Hey, was just interested and wanted to see if anyone who’s bedbound/severe (0 on Dr Lerner’s scale) can answer these:

How long have u been bedbound for and at what point did u start being bedbound during the course of illness?
Have u ever flactuated on the severity scale?
For those who’ve been bedbound for long (at least a few months), how do u deal with muscle loss if u deal with it at all?
Is there any way u have found to do exercises (read: flex muscles for a minute perhaps?) without getting PEM or horrible pain straight away or delayed pain?
If u have been bedbound for at least a year with no activity apart from bathroom breaks, is there any hope for u to regain muscle back u think?
I’ve read that it ‘may’ be possible to regain lost muscle when u start being mobile but it’s not a slam dunk. Does it mean those who get better/recover never recover their actual muscles?!
Has anyone tried ultrasound or electrical stimulation therapy and has it helped? If u haven’t, why not?
Also some pics online of bedbound patients: not all of them look like they’ve lost lots of muscle, hows that possible?
I just want to hear true experiences but positive stories are so great! lemme know, good n bad, articles etc

 

[ahmo]

Hi @Tella. I consider myself homebound, but spend a considerable amount of time lying down. After my husband died 3 years ago. I spent even more time lying as I'd had the stresses around the death and later emptying the house, in 15 minute periods of work.

Eventually I became aware of how little I was able to stretch. I couldn't get past the tightness. Finally I saw a physio and got some very effective stretches. It was slow, but I did these stretches generally twice a day, which was a real commitment. But since it was working, I kept on. Then I asked PT for some exercises I could do in pool, since walking felt like moving concrete pillars. I was able to do these pool walking exercises twice a week, for about 10-12 minutes.

And then I started to swim. I've only gotten up to 7.5 laps, in 25 metre pool, but I was also able to stick with that. And then I realized my legs were no longer just flabby, but had muscle again. whoopee! I kept it at 2 days a week, but have just now dropped to once a week, hoping this gives me the energy I'd like to be able to do cleaning things.

The point is, by starting slowly with some very basic things, I was able to recover myself a lot. I still have extremely limited energy, But now I can do basic stretching every day and continue to improve. Before I saw the PT, I had no idea there was something like a tight sciatic nerve. That seemed to be the source of my biggest restriction. I've also gotten very good tips from motivationaldoc on youtube. V short, 3-4 minute segments for stretches and other stuff. Good luck.

 

[Hufsamor]

@Howard ?

 

[Andrew]

Eliminate ones that are just too hard to do. If you can't do these all in one day, break them into two days. Amount of repetitions if up to to you, based on what you can do.

Lying on back

1. Flex ankles so toes point toward foot of bed, then flex all the way the other direction.
2. Move right leg outward and back. Then same with left leg.
3. Flex buttocks and release
4. With a bolster under your knees. Straighten leg, then relax it. Do the same with the other. If it is too hard to put the bolster there, forget it
5. Lift one leg and put it down. Then the other.

BTW, with the leg lifts, if it too hard to lift, it is okay to just lift so less weight is on the bed. IOW, the leg could still be touching, but not pressing into the bed as much.


6. hold out arms palms up. Turn palms down and back up.
7. Put your palms against each other. Press and release.
8. Using your fingers to hold your hands together, pull outward without releasing grip. Then relax.
9. arms out palms up. Bend arms until forearm is pointing up. Like doing curls. Put arms down.

BTW, when you get better all these exercises (even the leg ones) can be done standing up. IOW, when you get to the point where you are walking around, you can do these standing up.

 

[Howard]

Greetings,

I've been exclusively bed-bound since 2015, but the illness may have begun in 2010 as a result of food poisoning / and related intestinal distress.

From 2016 - 2017 I was unable to do much of anything at all, tolerate light or sound or any kind of external sensation or stimuli (most of the time I was blindfolded while wearing industrial-strength earmuffs to block out the world), but I gradually began improving in 2018.

A severely limited diet, along with my meditation and mindfulness practice were the only changes I made (besides ingesting tart cherry powder to encourage restful sleep).

Now I can watch some television, create music, write prolifically (voice-to-text), and even listen to music at night time.

After several failed attempts I finally restarted physical therapy again this past September, and many of the exercises @Andrew listed are the same ones that I do myself. Unfortunately, I've had to discontinue my physical therapy of late..

My PEM varies greatly and seemingly without reason. Besides the leg lifts, I can do most of the exercises.. it's just that if I push too far, I'm unable to move for hours afterwards. The main problem is that I never know ahead of time how much exercise is (or was) too much until the PEM kicks in.

Hope some of this helps,

H

 

[Andrew]

Another thing is the degree to which someone is bedbound. I was recently in the hospital. They wrapped each lower leg with an automated leg massage gizmo. This was to keep me from developing blood clots in my legs. But after talking with them I realized this was not necessary. Even though I was in bed, I was also getting up several times a day. I walked to the nearby sink to brush my teeth. I walked to the toilet. I got things from my travel bag. I adjusted the heat. I opened or shut the door to the room. Etc.

 

[Jessie 107]

I have been Bed bound since May 2018.
I have made a few very small improvements in the last few months, for example I can spend more time online, sometimes listening to music or a short podcast.
I am now starting to be able to feed myself in short amounts, and I can talk more.
But I cannot do anything physical like excercise, even in small amounts or I crash.
But I can move around the bed more than I could before, so I am doing something physical.

 

[Tella]

Wow. Just for anyone to read these and say it’s not a physiological illness.....!!! KEEP IN UP GUYS

 

[Tella]

Hi @Tella. I consider myself homebound, but spend a considerable amount of time lying down. After my husband died 3 years ago. I spent even more time lying as I'd had the stresses around the death and later emptying the house, in 15 minute periods of work.

Eventually I became aware of how little I was able to stretch. I couldn't get past the tightness. Finally I saw a physio and got some very effective stretches. It was slow, but I did these stretches generally twice a day, which was a real commitment. But since it was working, I kept on. Then I asked PT for some exercises I could do in pool, since walking felt like moving concrete pillars. I was able to do these pool walking exercises twice a week, for about 10-12 minutes.

And then I started to swim. I've only gotten up to 7.5 laps, in 25 metre pool, but I was also able to stick with that. And then I realized my legs were no longer just flabby, but had muscle again. whoopee! I kept it at 2 days a week, but have just now dropped to once a week, hoping this gives me the energy I'd like to be able to do cleaning things.

The point is, by starting slowly with some very basic things, I was able to recover myself a lot. I still have extremely limited energy, But now I can do basic stretching every day and continue to improve. Before I saw the PT, I had no idea there was something like a tight sciatic nerve. That seemed to be the source of my biggest restriction. I've also gotten very good tips from motivationaldoc on youtube. V short, 3-4 minute segments for stretches and other stuff. Good luck.

I’m sorry about your husband. I wish I could go the pool. Maybe one day! Hope u get better

 

[Tella]

Another thing is the degree to which someone is bedbound. I was recently in the hospital. They wrapped each lower leg with an automated leg massage gizmo. This was to keep me from developing blood clots in my legs. But after talking with them I realized this was not necessary. Even though I was in bed, I was also getting up several times a day. I walked to the nearby sink to brush my teeth. I walked to the toilet. I got things from my travel bag. I adjusted the heat. I opened or shut the door to the room. Etc.

Thnx a lot for your replies. Yes once I realized doing some of these small movements didn’t give me pem I started doing them. Can’t progreess onto smth more tho

 

[Tella]

Greetings,

I've been exclusively bed-bound since 2015, but the illness may have begun in 2010 as a result of food poisoning / and related intestinal distress.

From 2016 - 2017 I was unable to do much of anything at all, tolerate light or sound or any kind of external sensation or stimuli (most of the time I was blindfolded while wearing industrial-strength earmuffs to block out the world), but I gradually began improving in 2018.

A severely limited diet, along with my meditation and mindfulness practice were the only changes I made (besides ingesting tart cherry powder to encourage restful sleep).

Now I can watch some television, create music, write prolifically (voice-to-text), and even listen to music at night time.

After several failed attempts I finally restarted physical therapy again this past September, and many of the exercises @Andrew listed are the same ones that I do myself. Unfortunately, I've had to discontinue my physical therapy of late..

My PEM varies greatly and seemingly without reason. Besides the leg lifts, I can do most of the exercises.. it's just that if I push too far, I'm unable to move for hours afterwards. The main problem is that I never know ahead of time how much exercise is (or was) too much until the PEM kicks in.

Hope some of this helps,

H

Thnx. Indeed. Crazy pem can come out of nowhere even if I do all the right things. Well sometimes it’s just that one has to be completely still with no stimuli and only then u won’t crash. How sad is this...

 

[Tella]

I have been Bed bound since May 2018.
I have made a few very small improvements in the last few months, for example I can spend more time online, sometimes listening to music or a short podcast.
I am now starting to be able to feed myself in short amounts, and I can talk more.
But I cannot do anything physical like excercise, even in small amounts or I crash.
But I can move around the bed more than I could before, so I am doing something physical.

Thnx. Just a big well done to all those who care for us. It’s hard for them!

 

[Tella]

Does anyone here take any meds for any infections? Has it helped?
does anyone feel like death is coming soon when in pem? :s

 

[Pearshaped]

Ill since 2015,bedbound since 2017.
I was told I would never regain my muscles bec I lost so much.

Contracting my muscles has helped.
For me it works best lying on my tummy and then contract thighs or calves.
Or lying on my back and having a cussion(sp?)between your legs(a bit above knees)and PRESS.

If you are able to,go and see
POTS Survival Guide on Youtube.
She has some videos in a lying position and even though many of her "exercises" are not possible for me to do,
it gave me a lot of Ideas on "How to".
Hope that makes sense.

 

[Tella]

Ill since 2015,bedbound since 2017.
I was told I would never regain my muscles bec I lost so much.

Contracting my muscles has helped.
For me it works best lying on my tummy and then contract thighs or calves.
Or lying on my back and having a cussion(sp?)between your legs(a bit above knees)and PRESS.

If you are able to,go and see
POTS Survival Guide on Youtube.
She has some videos in a lying position and even though many of her "exercises" are not possible for me to do,
it gave me a lot of Ideas on "How to".
Hope that makes sense.

Thnx! Why do u think u got worse after two years? Have u tried any treatments at all?

 

[Pearshaped]

I was moderate the first year,followed doctors orders(their tratment was exercise),became much worse,got into hospital and then hell booke loose for the following two years.Since.2019 I have definetely improved,at least when it comes to cognition.

 

[Rufous McKinney]

Contracting my muscles has helped.
For me it works best lying on my tummy and then contract thighs or calves.
Or lying on my back and having a cussion(sp?)between your legs(a bit above knees)and PRESS.

I swear I am starting some form of stretching and isometrics. I promise. Soon.

 

[Tella]

I swear I am starting some form of stretching and isometrics. I promise. Soon.

Do it if u don’t get pem afterwards! I started in light stretching in bed and lifting up legs and straightaway u see muscles returning a bit.

 

[Tella]

I have been Bed bound since May 2018.
I have made a few very small improvements in the last few months, for example I can spend more time online, sometimes listening to music or a short podcast.
I am now starting to be able to feed myself in short amounts, and I can talk more.
But I cannot do anything physical like excercise, even in small amounts or I crash.
But I can move around the bed more than I could before, so I am doing something physical.

Did u have dramatic weight and muscle loss since being in bed? Have u always been severe? I’m glad to see u improve

 

[Rufous McKinney]

Do it if u don’t get pem afterwards!

in 48 hours: my grandaughter will be here. 10 months old. 16 pounds (?). I will- pick her up.

Oh- she is now twice as big as 5 months ago. Oh. Well, I will be seated when I pick her up.