How can I rehabilitate my legs after being bedridden?

[slysaint]

I was only semi-bedbound at the beginning but before the ME I did have to recover from months in bed with a broken leg (following an RTA). I think to start with, gentle stretching exercises that you can do in bed to get your joints and muscles more flexible would be good. Then sitting on the side of your bed with your legs over the side and gently trying to lift each leg.........but I think you're already doing all this.
One other option (which would mean a physio) is Electrical Muscle stimulation which I've had many times in the past, for my leg, and also when I hurt my back.
To practice standing you will probably need someone to help but I wouldn't attempt putting weight on your legs until your muscles are a bit stronger, and you have a bit more energy. Also, as you said, your body's got to get used to being back in a vertical position. This would all be true even without the addtional 'complication' of having ME. For me being upright/walking uses up the most energy.
But it's great that you are hopefully moving forward

 

[Daffodil]

@Cheesus maybe you can use the walker inside the house so no one would see you? if I have enough room to walk around, that is.

 

[Woolie]

Nothing to add here to everyone's really good comments. But I just shed another wee tear at your story, @Cheesus. What a hell you must have gone through. I hope you continue to improve and get some quality of life back.

 

[Cheesus]

I wonder if it is a good idea to try and "rehabilitate" your legs just yet?

The LDN has given you the ability to sit up (which is wonderful) but maybe the reason your legs are still jelly is that you don't have enough strength or "something" yet to stand up.

You have only just started the LDN (2 weeks) and in that time you have improved so that you can do more things in bed like sittin up but I am guessing that you "naturally" started doing them and you didn't to "rehabilitate" those muscles. It just happened.

What's the difference between the muscles in the top half of your body and the lower - why does one set just happen and one set need "help"?

Your legs probably just need to "happen" as well and that is when you know it is safe to start moving them. I'm thinking of my 80+ year old mother who was bed bound for at least 2 years and who picked up when they discovered her B12 definciency and another health problem. She went from bedbound to being able to sit in a wheelchair and then walk supported by a walker within a week. It just "happened".

One ME patient I know developed a type of OI after being bedbound and it was that which stopped her standing when she recovered from that bout. She did her own program of slowly standing for increased time and the OI eventually went.

I think that there is more going on here and hopefully some experimentation will tell you what. Just please keep safe as I would hate for you to deteriorate. So glad you are doing well!

I think the upper half of my body doesn't need reconditioning to the same extent as I have been using it more than than the lower half (relatively speaking). It also doesn't need to support the weight of my body. If you could feel the muscles in my legs you would probably see why I need to do something to rebuild them before trying to stand/walk.

Having said that, you do make a valid point, and the way I think I need to envisage this in my head is that any reconditioning needs to be done well within my increasing energy bracket rather than at the outer edges of it.

Why do you think your ankles are hurting when you try to weight bear? that sounds like there is more issues then just weak legs. I cant remember getting any pain in my ankles when I started weight bearing again. Have you got FM going on? Have you developed issues with your flexability which is now putting pressure on your ankles when you weight bear a bit on feet?

Honestly I think it may be inflammation from a methylation protocol I am doing. I am in the very small minority of patients who has no pain associated with their condition whatsoever, even during intense PEM. Before my methylation protocol I had no pain in my ankles at all. The LDN seems to be helping with it a lot, and stopping folate seems to help even more. Makes me question whether I should really be doing a methylation protocol!

I was only semi-bedbound at the beginning but before the ME I did have to recover from months in bed with a broken leg (following an RTA). I think to start with, gentle stretching exercises that you can do in bed to get your joints and muscles more flexible would be good. Then sitting on the side of your bed with your legs over the side and gently trying to lift each leg.........but I think you're already doing all this.
One other option (which would mean a physio) is Electrical Muscle stimulation which I've had many times in the past, for my leg, and also when I hurt my back.
To practice standing you will probably need someone to help but I wouldn't attempt putting weight on your legs until your muscles are a bit stronger, and you have a bit more energy. Also, as you said, your body's got to get used to being back in a vertical position. This would all be true even without the addtional 'complication' of having ME. For me being upright/walking uses up the most energy.
But it's great that you are hopefully moving forward

Thanks for your comments. I am trying to stretch and ease myself up a bit. When I sit up in bed I try flexing my spine and twisting, stretching, reaching, etc in order to get myself limbered up and build my core muscles a little. It is a slow process.

@Cheesus maybe you can use the walker inside the house so no one would see you? if I have enough room to walk around, that is.

It hadn't even occurred to me that I might use it outside haha. It's more that I am trying to find the remnants of my 20s underneath this oppressive illness, and to use something like that would be a real psychological blow to me. I just can't do it. Though, as I said, I really appreciate you contributing and making suggestions.

Nothing to add here to everyone's really good comments. But I just shed another wee tear at your story, @Cheesus. What a hell you must have gone through. I hope you continue to improve and get some quality of life back.

Thank you

 

[Cheesus]

I just thought I'd come back and give a little update. I have been standing up a bit and I find that my leg strength is okay and I can bear my weight. The problem with progressing from there to walking is not strength per se, but rather than my calves have become so ridiculously tight from being bedridden that I actually cannot fully straighten my legs whilst standing bolt upright. Where I try to straighten my legs I can really feel a pull in my calf muscles.

I've never been particularly flexible but this is on another level. Forget touching your toes, my legs are so tight I can't even stand up straight.

 

[Apple]

Hi @Cheesus Firstly big yay for improvement. So happy for you.

I have developed tight/short muscles too. I'm not bedridden, I walk around the house a a fair amount, but spend most of my life in bed or on the sofa.

An exercise I was given was to sit up or be propped up, and with your legs straight (on the bed or floor) - point your toes upwards or towards you until you feel the pull in your legs and hold.

I haven't had the energy expenditure to do this often enough to make much of a difference (causes me extra pain and fatigue and makes it difficult for me to walk around & get up the stairs which is problematic when we don't have a downstairs bathroom :/ ).

I came across another girl's blog ages ago, and she gave some helpful tips:

https://extralongduvetday.wordpress.com/2015/05/16/bakertynes-exercising-in-bed/

Good luck

 

[Cheesus]

Hi @Cheesus Firstly big yay for improvement. So happy for you.

I have developed tight/short muscles too. I'm not bedridden, I walk around the house a a fair amount, but spend most of my life in bed or on the sofa.

An exercise I was given was to sit up or be propped up, and with your legs straight (on the bed or floor) - point your toes upwards or towards you until you feel the pull in your legs and hold.

I haven't had the energy expenditure to do this often enough to make much of a difference (causes me extra pain and fatigue and makes it difficult for me to walk around & get up the stairs which is problematic when we don't have a downstairs bathroom :/ ).

I came across another girl's blog ages ago, and she gave some helpful tips:

https://extralongduvetday.wordpress.com/2015/05/16/bakertynes-exercising-in-bed/

Good luck

Hi Apple. Thanks very much for the link and the ideas. I have been using an exercise band which I am using to stretch my muscles/tendons. It seems to be working quite well... when I remember to use it! The 'sausage prop' looks like a great idea!

 

[Little Bluestem]

I don't have much to add either, but did want to note that exercise bands come in different colors. The different colors have different degrees of resistance. You can start with the least resistant and move up.

 

[justy]

I don't have much to add either, but did want to note that exercise bands come in different colors..

Hhaha - when I read this I thought you were just suggesting a change of colour for fun!

Good luck Cheesus with your progress - I tend to agree with UKXMRV's view. Take it slow and hopefully you will be gambolling to the loo in no time!

 

[Cheesus]

I don't have much to add either, but did want to note that exercise bands come in different colors. The different colors have different degrees of resistance. You can start with the least resistant and move up.

Thanks for the heads up I found that out just before I made the final click on the Amazon button! I also realised at the last second that they are usually made of latex, which I am allergic to. There are plenty of non-latex options if anyone who is reading this thread is interested.

Hhaha - when I read this I thought you were just suggesting a change of colour for fun!

Good luck Cheesus with your progress - I tend to agree with UKXMRV's view. Take it slow and hopefully you will be gambolling to the loo in no time!

This is by far the most difficult thing about improving. I am doing my best!

Gambolling is a great word

 

[Cheesus]

So I started my journey of trying to rehabilitate my legs around two months ago. I have just now managed to get to the bathroom for the first time in very nearly two yeas (22 months and 25 days, to be exact). That includes negotiating two small flights of stairs (a round trip of 18 individual stairs).

I am very happy with my progress, but in a strange way it is also a bit hollow because I know LDN isn't curative. It won't be the case that I can get to the bathroom whenever I fancy yet, and it will probably be at least a few weeks if not a month before I venture to try and have a shower.

When I got to the bathroom i sat down with my heart racing and my head spinning. Having my environmemt change so radically really revved up my nervous system, so I need to gently become accustomed to it. I think it was also partially that I was scared to be so far away from the safety of my bed. I didn't want to run out of steam before I could make it back. Fortunately I got back comfortably and I am not currently feeling any effects of over-exertion.

I have had a little help from a physiotherapist. One of my biggest challenges has been the stiffness in my ankles and weakness in my knees, which has made tackling stairs very difficult. It is still quite painful to walk sometimes - particularly on stairs - though i am increasingly confident when tackling flat ground.

 

[daisybell]

That's fantastic @Cheesus - so pleased for you and long may this improvement continue!

 

[Cheesus]

Thank you, @daisybell I really appreciate your support.

 

[AndyPandy]

Great news @Cheesus!

 

[Comet]

That's fantastic @Cheesus! I know what you mean about it being difficult for your nervous system to take in new surroundings. For me, new surroundings are a whole new set of sensory inputs for my brain to have to process. Not easy.
Glad you are having impovements!

 

[Cheesus]

Thanks @AndyPandy and @Comet

 

[Dechi]

I just read this thread and want to congratulate you @Cheesus ! You are very determined and courageous. Have you thought about gentle massotherapy ? This would help relax your muscles and give you more movement. You need to be careful though because it's possible to have PEM from it, I know I have had, although not severe. it's very stimulating and can be demanding on the nervous system. But maybe start with small periods of 5-15 minutes at a time ?

 

[Cheesus]

Thanks @Dechi That is a good idea, and it is something I have been doing with my physiotherapist a bit. He is specifically focusing on my feet as the joints have seized up. I have heard that some people feel awful after deep muscle massages, supposedly because of toxins being released. I can also see how it might stimulate the nervous system asyou say. I will bring it up with my physiotherapist next time i see him and see what he reckons.