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How can I rehabilitate my legs after being bedridden?

Discussion in 'General Treatment' started by Cheesus, Aug 1, 2016.

  1. Cheesus

    Cheesus Senior Member

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    I am finally making clear progress after being completely bedridden for around 20 months. During that time I have only stood up a handful of times and I have always immediately fallen back on the bed afterwards. I have not been able to walk at all and I have had to slump onto a commode beside my bed once a day to use the toilet. Otherwise I have been permanently horizontal and in these same four walls without respite.

    But two weeks ago I started 0.5mg naltrexone, and things are rapidly changing. I can use the laptop for prolonged periods and sit up for up to 5 minutes at a time. I am much more chipper and my family is commenting on how much better I am. I am able to shift about in bed and sit on the end of my bed briefly.

    But my legs are jelly. I daren't try to stand up properly yet as I am concerned I will fall. I am also worried about causing myself PEM and halting my improvement.

    What have others who have been in this situation done? Does anyone have any suggestions for rehabilitation when it comes to walking and moving about? I long to use a real toilet haha. I daresay GET is actually what is required... though the type of GET that comes from improvement rather than that which supposedly causes it.

    Thoughts?
     
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  2. Kati

    Kati Patient in training

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    Congrats on your progress. The best answer would be to hire a professional in rehab, a physiotherapist, who would assess your current condition and make recommendations of exercises to do to get you back on your feet.

    Even if you feel much better, do be very careful with pacing and in incorporating activities so you are not doing too much, too soon.

    Best. Kati
     
    Last edited: Aug 2, 2016
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  3. lnester7

    lnester7 Seven

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    Whatever you do start laying down.
    i bought a bike pedal ( those you do while sittinf down) and put it against the wall. Then pedal while laying down.

    Start slow and small. Monitor HR. And Resting HR. Follow the safe excercices for Cfs guidelines ( see Klimas videos).
     
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  4. Cheesus

    Cheesus Senior Member

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    Thank you both for your suggestions! I will have a think about how I can best move forwards. I am wary of physiotherapists as I do not want someone to push me, though I may have a chat with one to see if we can come to a mutual understanding.

    Whatever I do, slow and steady seems to be the key I would guess. I have a habit of always doing too much too soon. I get a slight bump in my energy and you will see my crawling towards the door with skis in one hand and my mountain bike in the other.

    Never ends well.
     
  5. dancer

    dancer Senior Member

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    Using resistance bands to support your leg while you are laying down - and guiding it through range of motion - might help return strength and flexibility. Gently does it. :) Glad to hear about your improvement after such a long bad spell!
     
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  6. Cheesus

    Cheesus Senior Member

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    Resistance bands! I have thought that something like that would help but had no idea what they were called or if they even existed. Now they have a name I will take a look.
     
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  7. erin

    erin Senior Member

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    20 months such a long time. It's so encouraging that you are much better now. For the legs very gentle swimming, actually paddling might help. If you live in a good climate and near by the sea.
    We do have a wheelchair bound lady in the neighbourhood. She had a stroke few months ago. Very gentle swimming has been so helpful for her. Good luck.
     
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  8. Daffodil

    Daffodil Senior Member

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    @Cheesus how about a walker? it would support you while you walked and gained strength....
     
  9. daisybell

    daisybell Senior Member

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    Great news @Cheesus - I'm so pleased for you that you're getting improvement. I would agree with @Daffodil that a walker sounds like a good idea. One of those ones with a seat so if you need you can turn round and sit down.... I'm not a physio but I would suggest one like this sort image.jpeg
     
  10. Daffodil

    Daffodil Senior Member

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    i was thinking maybe a simpler one..the kinds they give you after surgery at the hospital?
     
  11. alex3619

    alex3619 Senior Member

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    Prolonged bedrest will lead to a muscle/vascular/bone deconditioning issue, but gentle exercise will help there. A professional rehabilitation therapist would help, though this is well established medical science. Do work with someone who is willing to adjust things for your other health issues.

    However a big issue is neurological. You need to get your brain used to moving your legs and balancing again. Take it slow. A rehab professional can help with this again.

    To reiterate, take it slowly.
     
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  12. rosie26

    rosie26 Senior Member

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    I made up my resistance band with a spare roll of thick elastic that I kept in my sewing kit. I just tied the ends together and it was good enough. Just thought I would mention it incase you had some elastic handy as a temporary measure, perhaps.

    If I were you though, I would just try to strengthen my legs by getting up more often than you have been and going for a short walk around the house. I would wait for strengthening the legs and working the muscles too hard until you are more improved. But that's for you to decide and what you feel comfortable with. Strengthening the leg muscles could set you back. I had to go very easy on the resistance exercises. I have given them away for the last 3 years due to a deterioration in my ME.

    Very pleased you are feeling better. Hope this continues for you.
     
  13. Deltrus

    Deltrus Senior Member

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    There are packs of circular resistance bands for $10 on amazon, great for legs.
     
  14. Anika

    Anika Senior Member

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    When I noted my leg strength deteriorating, I got out some light weight bands, just a pound or two, and later three pounds, and slipped them over my feet while reclined. I'd do a few lifts, never pushing it too much. It took a while but it helped incrementally.

    As others noted dealing with your balance, and likely some orthostatic intolerance issues, is also important. Building leg muscles back up is also helpful I believe for OI issues, as it helps blood get pumped back to your heart.

    I think there are some good videos online by Dr Klimas's group that emphasize slow buildup and doing things while reclined. But I'd start even more slowly than they may suggest. Let's face it, even 15 seconds at a time is a start when you've been bedbound. Five minutes would have been too much in my experience.

    I love resistance bands but found the right type of weight bands easier to use for legs.

    While it is usually good to get professional help, the problem for us is that few are knowledgeable enough to tell us to STOP before we do too much, and push us to do more than we should, since that's the usual model. Also, how do you efficiently get help to do a minute or two within a half hour, for example? But if you need guidance on proper form of exercise, that is helpful, and important. Just be prepared to set your own limits.
     
  15. AndyPandy

    AndyPandy Making the most of it

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    When I was mostly bedridden I tried "exercises" for the bedridden which I found on various sites on the Internet. Some were just contracting and releasing muscles and moving limbs about in bed.

    I approached it very very carefully with the aim of not making things worse, but trying to get my muscles used to a little bit of activity. Might be something to experiment with if you are not able to get a suitable professional to help you.

    Best wishes Andy
     
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  16. Cheesus

    Cheesus Senior Member

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    Thank you for all your help, everyone. These are some great suggestions. Slow and steady seems to be a prevailing attitude and I had a feeling that would be the case, but it is probably going to be the most difficult part of all.

    I will think about a physiotherapist, though as Anika said it might be difficult to get them to move at a pace suitable for ME. My local ME service might actually be the best place for that, though I will have to be strict with them that I am using GET to recover some ability in my unused body, not to improve my ME.

    I will check out resistance bands and online exercises. I think gentle swimming is a long way down the road.

    The walker does look like it could help, but at the age of 26 I just cannot bring myself to use something designed for the over 75s. I'd rather use crutches if I had to. Good suggestion though. Thanks for the input.
     
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  17. taniaaust1

    taniaaust1 Senior Member

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    I personally suggest to avoid any rehab specialists as it is far more likely then not that they wont understand your condition at all and will encourage too fast progression for a severe ME person.

    When I went from bedbound to starting to feel a bit better and actually getting up and doing little things, I sought out a rehab physio for exercises to strengthen my body after being bedbound for quite a while (not as long as you where thou!) as I was worried about moving too fast with things and injuring myself as I knew my whole body had been left weaker. So I asked around till I found a physio who told me she'd helped others who had ME (I wasnt prepared to go to one who hadnt dealt with ME/CFS people at all).

    It turned out thou this one had only ever had a few ME patients and they hadnt been nowhere near as ill I was, I actually injured myself with her very first exercise she gave which was a full sit up.. with the effort of doing that, it felt like it torn something in my stomach so I got left in pain (thou I had warned her I had been bedbound for quite a while).

    She also had me join a physio rehab group in which she got me to use some secreteers and cut some herbs (mint) while sitting on the ground.. this left me afterwards unable to use my hands to the point I couldnt even then eat with a fork. She just then shrugged off my then severely spasming hands from this as if it was nothing to do what she'd had me do (in her head she didnt at all understand that she'd made me worst).

    Anyway, rehab was disasterous and what was worst is cause she had dealt with a couple of people with ME/CFS before who wasnt as bad as me, I think it actually made her less cautious then she needed to be with me. I think you can know better then anyone else how slow you may need to take things.
    ......

    Unfortunately after the failed rehab attempt with the physio and with me not really knowing how to go about making my body stronger, I just then didnt worry about trying to do exercises and just instead slowly got into being up out of bed doing a thing here and then.

    A few months later I picked up a small brick and in doing so injured my weak back (all my back muscles supporting my spine had been left week from my bedbound time...note I was unaware that my back was weak in this way till I injured myself).

    This back injury put me into hospital for a whole week with not being able to move even a little bit due to then severe back spasms and pain. (I was only when I collapsed unconscious onto the hospital floor which put my back back in did this become okay again and was able to leave hospital. I woke up to find the hospital had me on oxygen cause I'd passed out in pain and hence collapsed when they tried to get me to use the bedside potty thingy).

    anyway, with your lack of sitting much, I suggest to take care of your back and try to strengthen the muscles there first as it can too easily lead to injury like what happened to me otherwise. (I suggest to look up exercises online and only do the ones you can do without having to try hard at all. Do not make effort doing exercises as then you may be pushing too hard). Go slow with this! It will take many months to build muscles back up. (if you havent been sitting up much your back will be super weak).

    I'd think resistance bands would be good.

    best luck
     
    Last edited: Aug 2, 2016
  18. Cheesus

    Cheesus Senior Member

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    Thank you for your input, @taniaaust1 - your experience with the physiotherapist is why I am nervous about it. It is very difficult for someone to know how much I can handle other than me. I was thinking maybe just going at my own pace using the other suggestions people have made here could be the better option.

    Whilst I have been bedridden longer than you, I do not think I have been as severe as you as I have been able to sit up and shift onto the commode at least once a day, which has obviously been helpful in retaining a bit of movement and muscle strength. My core muscles are definitely weak, but not so bad that I cannot support myself at all.

    I've been trying to sit up and stretch a bit when I am able. Also putting my feet on the ground and gently pushing against the floor as though my feet are on tip-toes. It is surprisingly difficult but also not so bad that it is a strain. It makes my ankles hurt though.
     
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  19. ukxmrv

    ukxmrv Senior Member

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    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!
     
  20. taniaaust1

    taniaaust1 Senior Member

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    That's the issue, one can be still able to sit up but have got very weak in the main supportive muscles and not realise how much they are till they are hurt.

    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?

    Good to hear that you are doing sitting when able and doing okay with that.
     

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