Gait in ME/CFS

My wife and I argue regularly about appropriate public gait. By hunching over, and alternating lunges with brief pauses, I can ambulate at perhaps 30% of the speed of an adult human. The alternative is to remain upright, with relatively conventional if short steps, but at only 15% of normal human pace. I think that the former is the best trade-off between efficient progress and looking cool, while my wife is vociferously in favour of the latter.

I have no idea which of these gaits consumes more energy or is likelier to cause PEM, and in either case I am limited to 30 or 40 yards at best.

Gait around the house is a slightly different matter, because furniture plays such an important supporting role.

 

Certainly when I was less ill I was very aware that when I had bad PEM or had been through an ongoing bad spell (over-exertion-wise rather than defining it as ill health specifically because then noone was really at all bothered regarding me saying I had limits) my gait went.

Indeed I would say my gait was that of a very fit person on a good-normal day then I felt like I was walking like a quasimodo cartoon character when under the weather.

Goodness knows what not long-term iller mine is like now.

But I do worry about cart before horse interpretations when people talk about efficiency etc. the big difference is to do with 'bounce' - you just don't have it and the issue of lifting up certain body parts you don't realise you are lifting up until you get a disease so horrid you realise your arms can't support themselves when they are too tired plays another part. So it is about draggin dead weight etc, like picking up a pet that isn't 'with you and helping it' but instead subtly and cleverly knowing to just relax theit certain clever way to produce dead weight as you try and lift.

If someone is studying it for indications and proof of how our muscles and certain areas can individually get shot temporarily because we have localised 'PEM' - except that is like 'empty muscles' (and is normally preceded by a distinctive 'judder' as you do that one thing too much with them) - so you probably don't need to do internal stuff to see how they in some can be unusable/less usable certain days and so that would be scannable in gait. But the person walking knows it is damned inefficient - they know they probably shouldn't be doing it at all and it literally feels like they are dragging their body to different extents I'm sure.

Except for the interesting 'early signs' which could act as early warning potentially. Where we - as determined a souls as you get - perhaps notice less than most because of the sheer amount on our plate vs support to stay on top of it keeping us distracted etc. we can't afford sometimes to notice and just have to be happy with 'can but shouldn't' as 'a good day' rather than a bad given how brutal the condition is re: how few and far between a good day/the amount we could do vs what we need to would be if we really did ration only to those times.

 

Only able to skim but in case it's useful --

brief previous discussion on gait here:

https://www.s4me.info/threads/objec...gue-and-fatiguability.4241/page-2#post-184885

 

I've had a lot of change in gait with ME.

In the shower my legs will automaticlly spread wider apart for balance in response to how much imbalance I am feeling. It is a gauge of how I am with that part of my ME. The further apart the worse I am.

Walking into large high ceiling buildings makes me more unsteady on my feet and a lot of movement in front of me.

I find when crossing a road I have to check both ways more times because I feel my responses are slower and because I have to turn my head slower so as not to get off balance.

With walking I will walk with legs further apart for steading when needed.

 

In PEM I also feel slower. It feels a bit like moving in water, like there is some resistance. My body needs to work harder. However, I don't think an outside viewer would notice anything special about me. It is probably not pronounced enough for that in my case. But interestingly I can get muscle aches (delayed) from an activity done in PEM while I don't get muscle aches from the exact same activity in a non-PEM state. So I often think that my body/muscles do work harder in PEM somehow.

This one is not about gait but I am also noticeably very clumsy in PEM. I keep dropping (and thus breaking) things for example. I'm not quite sure if this is due to motor skill issues or cognitive/concentration problems though.

 

(I take walks regularly. Don't get me wrong though, these are slow walks, and despite being dizzy, exhausted, in pain. On those days, it's the only activity I do because then " total rest " becomes mandatory.)

So, once in winter, I suddenly noticed my footprints left in the fresh snow and was amazed to find that the tracing was clearly of the " sinusoidal " type (giving the impression of a drunk person ! ). It struck me because the comparison with the traces left by other walkers reflected a marked difference, these branched off a little but the trend was a rather straight line. Personally, I attribute this gait to muscle weakness because that's what I feel in my body. I even tried to follow a " normal " tracing but after a few steps I couldn't do it anymore, due to a lack of balance and the physical energy/ concentration that it required.

In short, before ME I walked normally, but now my gait is definitively different (other people have also pointed this out to me). I would say that I can use my muscles (not without pain !) but it's the endurance that is weak. And me too during PEM, my coordination can get terrible (dropping things, bumping into anything, scratching my hands against cabinets-drawers, etc.) In my worst PEMs, it's like I'm wearing heavy lead clothes... any movement is difficult to execute.

 

Any changes in gait are likely to reduce walking efficiency and thus increase physiological cost. It might involve no dysfunction in muscle cells or mitochondria or blood flow/oxygenation, but if your movements are hampered by some cause, such as neural dysfunction, they'll be less efficient. On days when my ME was worse, I felt that it "took the bounce out of my step", and that "bounce" is important for energy conservation.

To improve their study, they should use computer imaging to compare against movement of healthy controls. I expect the healthy controls would be bouncing and swinging limbs properly, while the "feeling unwell" ones would be plodding, and maybe fighting normal swinging of mass.

 

Early on, and for years, my left foot would sort of slop along when I walked. The ground would come up sooner for that foot. I know this sounds odd.

Due to fatigue and weakness, I often shuffled along, and sometimes tripped. I had to make a conscious effort to pick up my feet.

I still have to remind myself to pick up my feet.

In the hotter weather, I become extra fatigued, and when outside, walk very slowly, because that's the best I can do.

 

My walking varies with my current ME severity and with PEM. When severe there is a balance issue, but also I wonder if there is a dyspraxic element. I don’t generally require a stick on familiar ground without any distractions, though having said that in side the house where the position of everything is well know, I can use furniture or the walls to avoid falling. However in less familiar situation I will need a stick even over relatively smooth terrain, for example crossing a road may be difficult where as well as focusing on the walking I have to split my attention with possible traffic.

I am not conscious of my gait, but imagine that too varies with my ME/PEM and the need at times to bring the act of walking into conscious monitoring.

 

My muscles tire more than that of a healthy person when walking, and this is visible in my gait. I begin walking slower, use my hands for extra strength while walking up stairs, I don't raise my feet as much and this makes my gait look stiff and, when my muscles are very tired, my feet will slide on the floor instead of being properly lifted. The distance covered in each step also decreases. The feet may be set apart more than usual to help improve balance but it depends on the day (this particular abnormalities seems to have more to do with bad days than with muscle fatigue).

Other people can see that my gait is abnormal and comment on it without being asked to. This aspect of my illness is visible. A muscle biopsy also showed nonspecific abnormalities so my muscles are not healthy.

Another odd thing about my leg muscles is that they are so hard, and feel a bit as if they're never 100% relaxed. There can be twitching in tiny portions of muscles.

I can walk quickly when rested, but tire faster and more intensely than healthy people.

 

Just to elaborate a bit more on this regarding severity.

The stages of severity in the shower with gait from milder end to severe.
1. Stand normally.
2. Legs/feet apart.
3. Legs/feet further apart.
4. Legs/feet much further apart but also having to tighten the muscles in my legs with knees bent more to hold myself up more steadily. Not a pleasant position!
5. Have to sit down on the stool in the shower.

 

Like many others, it seems, I go from normal gait to very elderly lady (when in PEM). For me, this transition is most obvious between the morning of a medical appointment - walk normally to bathroom, wardrobe and wheelchair, and when I get back - hobble back into bed, hunched over, slow, holding rails/furniture.

I can be thrust into this abnormal gait by being talked to while upright, or by a lot of noise/light. Having to shift my attention to a cognitive task seems to reduce my ability to coordinate physical activity. (There was a study demonstrating this, someone else will know which one.)

Like @Peter Trewhitt , sometimes it feels like there's a dyspraxic element to it, when in PEM.

 

My gait is abnormal. I’ve had other people spontaneously comment on it and even laugh at the way I walk. As I get progressively fatigued, my feet start dragging along the ground. I fall at least a couple of times a year.

 

Yes, there have been plenty of days where it occurs to me: "I'm walking like an elderly man." On days when my ME is less than usual, I notice that I'm walking with a brisk stride, so that means that my typical ME gait is worse than that of a healthy person.

 

That latter line is soooo true! I had a recent situation where I was trying to do my shoe lace and someone carried on talking (reasonably) and I had to mention I couldn't do 2 things at the same time - otherwise would have annoyed them by taking ridiculous amount of time or looked like I couldn't even manage that as long as I had just talking that I needn't participate in as a distraction.

You'd think after all these years that task was in the 'automatic' cognition part of brain but obviously not enough to prevent 'the phenomena' which is quite stunning, even to me, when it happens (goodness knows what those watching on assume as I've realised more with time how completely different outsider's assumptions of what they are watching/what they 'see' is to what is actually going on if you know the inside the body bit without our 'masking' to still 'look cool' )

 

I too use furniture and the walls to steady myself. I especially need this in the middle of the night. My balance seems worse then.

I've been doing exercises standing on one foot at a time for a minute or so each, a couple times per day. It seems to be helping my balance a bit.

Once in a while I go off course and veer to the left when walking. I don't plan this. It's a bit of an effort to get back to the direction I was heading in.

And, maybe not related directly to gait, but doing the Romberg test eyes closed, I fell over to the left 3 times.

ETA: I have fallen a few times over the years.
Maybe similar to @strategist my muscles are tight. My legs muscles are painful with walking.