Gait in ME/CFS

My normal gait used to be ramrod straight and borderline powerwalking. I didn't just walked, I Walked. I used to walk a lot. And use the stairs for anything below 6 floors. Always skipped the automated stairs and lifts if I could.

When PEM hits, I'm basically down to 90 year-old hunchbacked shuffling. It's pretty dramatic. My legs are wobbly and it's clearly not muscular as when I'm better they're strong enough to do one-legged exercise with OK balance. They tire easily but they're definitely strong enough for it.

It's probably more neurological than muscular. And probably more that they lack the necessary stuff for action potential, or don't replenish normally. Or something like that. There's always resistance, if it makes sense. Like turning a steering wheel without power-steering.

The muscle strength is definitely still there. But it's like a car stuck on the last gear, it just has no torque to it, isn't geared right.

 

Your cognition and physical energy when over extended sounds like mine: unresponsive, heavy limbs, like moving through molasses.

About the balance exercises I do, it's taken me several months to wobble less on one foot. At first, it would be mere seconds before I started to really waver around. My balance overall is still not good though.

Early on with ME - pre-diagnosis, I would tire easily in a no-stress classroom situation. My instructor noticed this as well. Eventually, I started to be more symptomatic, and had to quit everything except the bare minimum of survival at home in bed, or on the couch.

 

PEM and poor sleep worsens my gait, I become uncoordinated, sometimes my legs cross the midline in a lax fashion, (i.e. involuntarily) due to fatigue and I have to consciously straighten them. My Apple Health app actually says my gait length is less and some other gait metrics (I think speed up stairs and on flat get less but improve with the PEM). I have to use the wall to guide me, have been near to falling (and will use a cane for safety at the worse time, usually during a bacterial infection). If I reduce my gait speed I recover quicker, that is useful as I am home all day and no one can see me going at snail's pace around the house. After a good rest for several hours my gait will pick up a bit and if some critical thing happens I can push through and run like the clappers from an adrenaline rush and then crash after. There is no gait problems running but not something I really ever need to do unless there is an emergency indication i.e. flood, earthquake, smoke.

I walk very slowly during high PEM to try and conserve energy (which matches the cognitive impairment and orthostatic intolerance symptoms) and to maintain safety. I don't shuffle like Parkinson's Disease but definitely have a hunched posture. I often catch my feet on the rug or my flip-flops has not cleared a surface and gets folded underneath, all soft signs but no foot drop as per a medical examination of gait.

If I observed my gait from a medical perspective it is likely to look like I am drunk and a few neurologist might think I have a function gait disorder because it can fluctuate with overdrive from the cortical areas i.e. telling yourself to look normal as people will think you are drunk or mentally unwell rather than have a disability. I think it is from severe fatigue acting on subcortical regions and reduced blood perfusion but that is only my opinion not fact.

 

I was/am exactly the same as you. The only difference is my interpretation, where I think the problem is in the muscles not the nerves, and that the variability is in the muscles in that they can at times be strong like normal, but this is pretty infrequent. Could be either or both or something else of course!

When you say this doesn't occur when well rested, can you still deliberately hyperextend your knees? I.e. do you think you have some degree of genu recurvatum, that you usually control with muscles, but that this muscle control can be lost? Or can they simply not hyperextend at all when you're not fatigued?

My simple understanding is that knee hyperextension is normally anatomically hard-limited by ligaments (esp cruciates) and this is reinforced by the muscles. Too much loading leads to the typical sporting ACL injury which some here may have had in earlier life.

Given your observation of fatigue-related changes, is it possible for the ligaments to vary their performance over a shortish timeframe - I'm wondering about either changes in elastic fibres or perhaps the collagen cross-linking?? That's definitely a question for Jo.

 

I have hyper-extension and used this attribute in sports - gymnastics and very useful for getting into a lotus position for meditation and yoga and as a party trick, I could cross my feet over my thighs when sitting cross legged and could easily put my foot behind my neck and hyper-extend in the splits position. I could do that now but I think my sacroiliac joints would not be happy and there is PEM...

Age effects need to be considered in gait problems. As we age so does movement areas in the brain for some people, well, most eventually.

Gait in ME, I think is highly affected by mitochondrial dysfunction and then there is those endothelial problems.

 

No, ligaments do not vary in function over days, weeks or months. They can become lax over years in the context of severe muscle weakness but maybe only during growth and development.

People with hyper extensible knees, such as a professional ballet dancer I know, do not hyperextend during normal gait but may hyperextend in resting postures. I suspect that variable hypertension is likely to reflect the shifts in muscle control that we get when feeling unwell - like stooping or limping.

 

Typical for me is also this: I get out of bed and two seconds later, fall to my knees or flat on the ground.

Happened this morning.

When there is no fall, this problem can also look like staggering about for 10 seconds as if I was very drunk.

When handling things on the floor and standing up, instead of falling I might just become physically weak for the duration of this reduced blood flow to the brain. I stand up, begin walking but my speed and strength decreases very noticably. After several steps it returns. From normal strength and speed, it declines to the level of a very old man, then returns to normal.