"power drain" feeling when walking

[Complex CFSer]

Does anybody else get this, where you are walking along already with low energy of course and then it's like a sudden deadening of the muscles, literally like someone's pulled the plug out and your legs almost feel heavier as well. When I get this I try to force my legs to speed up and they just won't. My walking speed drops right down. I assume this is part of CFS but wondered if everyone gets it?

 

[slysaint]

Does anybody else get this, where you are walking along already with low energy of course and then it's like a sudden deadening of the muscles, literally like someone's pulled the plug out and your legs almost feel heavier as well. When I get this I try to force my legs to speed up and they just won't. My walking speed drops right down. I assume this is part of CFS but wondered if everyone gets it?

http://forums.phoenixrising.me/inde...avy-symptom-that-rarely-gets-mentioned.49125/

 

[Complex CFSer]

Ooh thanks for this slysaint. I hadn't heard of anyone else getting this and I'm so relieved I'm not alone. It's quite scary that you have no control over normal movement when it happens. I liked the walking through molasses description and loved the elephant strapped to each leg too because they are exactly it. I never wake up with this though. It's if I've done a really small amount of walking and it suddenly hits me. Quite awful to feel so restrained by your own body.

 

[Strawberry]

I definitely get this. And when I have overdone it so badly that I can barely walk, it bleeds over into my dreams. Most of the times I have dreams of running, hiking, gymnastics, etc. But when I am in a severe crash usually there is a group of people that are running from some disaster, and I can barely lift my legs for the next step. Everyone that runs past me looks at me with concern at my extremely slow speed, yet no one stops to help. Then I wake up and realize that extremely heavy and weak feeling is still there and I can barely conjure up the strength to roll over.

 

[Complex CFSer]

So you can't escape it even in your dreams! That's never happened to me. Real life is more than enough! It's quite a bizarre feeling because it's beond your control. But that makes it worse too.

 

[belize44]

Oh, I have had dreams like that too - mostly where I am wandering around in public in my nightclothes and very, very groggy and people are politely looking the other way.

 

[Complex CFSer]

Funny, my dreams used to be more energetic though. I used to be flying (with my arms!) and riding a bike (which I can't do). Maybe I don't dream those now though because life generally can be a drag, not because of CFS. I did used to dream more though, or remember my dreams and they were more vivid. Maybe that is because of CFS however, because I tend to go into an exhausted sleep. So glad I don't dream of the power drain and heavy legs, don't want to spoil fantasy land eh!

 

[Wonko]

I think dreaming you're flying with your arms may be a symptom, I remember when I was young of just point, run, jump and fly (but not at all like superman as he's fictional lol) being the way of doing it, then after I got ill, didn't know what it was at the time, then the arms were needed. With both a certain mental positioning was needed or it didn't work.

Slightly unrelated, I used to have a method for ending nightmares that involved finding/making a cliff and jumping off it. The falling sensation would wake me up. Worked for years, until my subconscious got wise and one night I hit the deck, broke quite a lot, and then got eaten, wasn't fun, but didn't wake up, bloody traitorous subconscious, who's giving it room and board? me, ungrateful thing. It's never worked since. On the plus side I can categorically state that dying in a dream doesn't kill you lol.

It may however give you M.E.

I did, for a while, have a tendency, as described by above posters, to get stuck, and unable to move in dreams, you get used to it I actually think its a fairly normal dream, although I suspect most would call it a nightmare.

These days my nightmares tend to be about letting other people down, in some way, often nebulous and poorly defined. Or, more recently, as I went a teeny bit mad due to a complete lack of sleep for months a couple of years ago, not being able to remember which version of reality I am in, is the dream a dream, does it interrelate to another dream, or reality etc. i.e a slightly more sophisticated version of the what did I do the night before that I have no memory of and why's everyone looking at me like that situation people apparently get into after a few too many barrels. When you can't tell if you're dreaming, if you're awake, or if what's going on is some hybrid, life gets interesting.

My subconscious had to come up with something I suppose, what with life being what it is it's not as if the normal nightmare/monster/being eviscerated/dying etc. type nightmare actually bothered me much, so it came up with something else

 

[Complex CFSer]

I can concur that if you die in a dream it doesn't correlate with life! I've been drowned, shot, eaten by crocodiles, you name it. Don't get me started on lucid dreaming LOL.

 

[NelliePledge]

My walking speed drops right down.

yes I definitely have this when I have any distance to walk eg if I go into my local town to meet a friend for lunch Im fine walking a couple of minutes from the carpark to the cafe but if Im out too long and use too much energy Ive found that the return walk is really slow maybe 25% normal pace. I have a folding walking stick that I take out with me in case I go into slow walking mode (and also in case I have to stand in a queue for more than a few seconds as I really struggle standing in queues).


When Ive got this badly I sort of end up hunching over as well as walking slowly it isnt just weak legs it is my torso and shoulders as well - I call it my little old lady walking. I was reluctant to use the stick but I find it helps keep me a bit steadier on my feet and also because it helps people register that Im walking slowly because they see the stick - a visual prompt. It hasnt happened recently because Ive identified that when I go to two places in town with a bit of extra walking involved that definitely drains my energy right down. so Ive got a bit better at pacing myself

 

[Wonko]

Sounds similar to what used to happen to me when I could walk any distance, but I called it the zombie shuffle. I've recently found out that the whole foot dragging thing actually has a name, it seems likely it's foot drop, I've also noticed it on stairs, one of my feet doesn't come down level, in any sense.

It was frustrating coz the last thing needed when out of energy is to slow to a crawl where people in zimmer frames go past seemingly at 90mph

 

[Complex CFSer]

I've never thought about whether it affects any other parts of me, I guess I've focused on my legs because it's affected my movement from A to B. I'm resisting using any walking aids, I don't go out much and trying not to give in to it on the occasions I do. I have even investigated folding wheelchairs as an option for if I want to do longer walks/be out more often, but I just don't want to feel like that's it as it's like the end of the road and all downhill from there. Not sure if my feet are dragging by your description Wonko, it seems to come from my leg muscles not my feet.

 

[ahmo]

This happens to me. I attribute it to adrenal depletion. I try to get off my feet ASAP when I feel this.

 

[ladycatlover]

I have even investigated folding wheelchairs as an option for if I want to do longer walks/be out more often, but I just don't want to feel like that's it as it's like the end of the road and all downhill from there.

I've used a (manual) wheelchair for over 10 years now. While mostly I'm not able to push myself very far in it, it gives me more freedom eg when browsing in shops, though husband does the majority of pushing. For me it has opened up my life rather than it going downhill. I've been to quite a few art exhibitions that I wouldn't have had the energy for without the wheelchair. And saw Tim Peake (astronaut) speak at New Scientist Live last year, from the front row!

And one of my best experiences (2012) was going to Port Eliot Festival, where husband trecked me up and down rough tracks and over grass - no way I could have coped without the wheelchair! We glamped for 4 nights in a bell tent, it was immense fun. Met one of my Internet Friends who was interviewing authors in a tent in the walled garden, took part in a silk scarf dyeing workshop, and saw fantastic band Stealing Sheep. I made good use of the bell tent too, resting up while husband went off for more music. Oh, also saw celebrity chef Angela Hartnett do a demo too, and got to taste her chicken salad. Yum!


Sitting outside the tent on the first evening by Maggie, on Flickr

Without the wheelchair I'd just have been stuck in the house. So do consider one - it might open up your life too.

 

[Complex CFSer]

@ahmo I have wondered about adrenal fatigue (perfectly possible in my case) however a little bit of research showed me that it's something the medical establishment doesn't recognise. The NHS won't recognise anything that costs them too much money!

@ladycatlover well done on doing all that! Wow. So glad a wheelchair has opened avenues up. Maybe I ought to give it more consideration. I've no idea whether getting some exercise is better than sitting down more, because I have no idea of what's at the root of my CFS. All I do know, is that if I push myself my body makes me pay for it. Is it hard to roll a manual wheelchair yourself? I have no objection to improving upper body strength, might make for nice toned arms and back! Part of me also feels like I would be a fraud if I used a wheelchair, because it's not as if my legs don't work at all, I just can't walk long distances. I remember reading online that the actress with dwarfism in Eastenders, was in receipt of abuse from people when they saw her walking because she uses a wheelchair for the most part in her role. She does sometimes need the wheelchair but not always. She has a very visible disability and she still got targeted. Can you imagine someone who looks perfectly able, when they've had enough of a rest, getting out of their wheelchair and pushing it until they need it again, getting verbal abuse from people. I've heard of people getting similar abuse for having a blue badge because they don't look disabled. I know we mustn't allow other peoples' attitudes to affect our choices, but it's very hard not to as people can be rotten. Invisible disability is very difficult to live with.

 

[slysaint]

when they saw her walking because she uses a wheelchair

I confess that at one place I worked at (long before I fell ill) there was a guy who used a wheelchair and one day I was horrified when I saw him in the carpark, get up out of the wheelchair, fold it and put it in the boot of his car.

People assume that you use a wheelchair not because you might have difficulty in walking, but because your legs don't work at all.

But then in a hospital or nursing home setting it would be perfectly normal for any sick person to be seen being pushed around in one.

(Maybe a dummy IV stand or oxygen tank strapped to your back might work?)

 

[Complex CFSer]

You have to see the humourous side @slysaint. That made me chuckle as I pictured it. I've seen people with blue badges striding out of their car and decided they were clearly fraudulently obtaining a blue badge, because they were perfectly able. That was before I developed CFS too. Nobody knows until they have walked in the other man's shoes eh. But that's how vulnerable we are to such misjudgement now it's us.

Love your 'suggestion'. Probably end up like Basil Fawlty with it all falling off me when I stood up. Don't know if an oxygen tank or IV is easy to shop with..;-).

 

[Seven7]

literally like someone's pulled the plug out and your legs almost feel heavier as well.

If you are getting to that point, means you are pushing it wayyyyyyyyyyyyyyyyyyyy over your limit and ignoring the first signs. You need to learn to identify the first signs (different for everybody). For example for me, I start dropping things off my hands.... before the last that is loose energy completely, I yawn a lot. If i get to the state you describe, I will be unable to move at all very quickly ( 2min or so). So I learnt to go to restroom (trust me you do not want to crash before you blackout). In my humble opinion, there are supplements for mito that do help to increase threshold with time, but the wall is the wall (the ceiling of your CFS energy envelope).

 

[Complex CFSer]

...that means I would barely walk at all @Inester7! I've already become very deconditioned (initially through life cirumstances but now through CFS, wonder if there is at least a partial connection) and I can only walk for a few minutes sometimes before I get the power drain. Thanks for your thoughts.

 

[ladycatlover]

Is it hard to roll a manual wheelchair yourself? I have no objection to improving upper body strength, might make for nice toned arms and back! Part of me also feels like I would be a fraud if I used a wheelchair, because it's not as if my legs don't work at all, I just can't walk long distances.

I find it very difficult to roll a manual wheelchair myself. Can manage on smooth flat floors, such as you get in museums and galleries, but even in those I'm pretty limited. Enough to pass from picture to picture for a while, I usually sit in front of an individual picture for several minutes, at the start I can keep going for a while, but do reach a point where my husband has to completely take over pushing me. Even that little bit of self movement is precious to me though.

Don't regard pushing yourself in a manual wheelchair as a means of toning muscles! While I'm sure it might work for some paraplegics, my belief is it won't work like that for people with ME. It's more likely to put you into relapse. For some reason I've never totally lost upper body strength (no idea why - my legs are shot, had the lead legs feeling from the start of all this), but I still stay within what I see as my envelope of energy when it comes to self-propelling. All the fun things I have done have really given me payback for days or weeks, but though I know the Psychs would prob say it's "boom and bust" and not to do it, I figure I only have one life so I'm going to do stupid (?) but fun/interesting things sometimes. If that makes sense?

Not as if my legs don't work at all either. But as DWP (UK Department for Work and Pensions for our friends outside UK) stuff for PIP disability payments says, I cannot do it safely, reliably, and repeatedly. Plus I'm inclined to fall over without support as have "mild" vestibular probs. It's not being a fraud to use something that enables you to get around better. Lots of older people use a walker with a seat so they can rest every so often - it's not that different for us. Actually, if your walking is significantly better than mine, that might be a way to go? I do realise it's a bit difficult if you're young! I'm 69 now, so most "normal" people can accept I'm slow (plus some also probably think I'm stupid too) so I haven't had rude comments. At least not yet!

In my previous post I just wanted to help you realise that using a wheelchair isn't all downhill - for me it's been more a blessing. But it wouldn't help if I didn't have somebody to push me.

And I've just had a new one, provided by NHS! Shock horror - I was totally gobsmacked! I think my GP took pity on me when one of the reasons I got turned down for PIP initially was that wheelchair was my own and "not prescribed by a medical professional"! I'm very lucky with my GP, she's - she has been very kind to me in the shortish time I've been seeing her. Can't believe how fortunate I am there.

If you have any questions just ask or PM me if you think I may be able to help. I do remember how difficult it was to use wheelchair at the beginning. But much easier than trying to stagger round using a stick or crutches for those longer distances.