Anyone else's muscles just fail immediately instead of gradually?

[rvallee]

I'm used to my normal healthy body from before working in a way in which when I am exerting muscle effort, like holding something, instead of gradually failing, doing the shaking thing, muscles just fail outright. I never noticed this until recently, but since I did it's really remarkable.

There is no gradual loss of function, it just snaps off. It happens quickly, too, but it's how sudden the loss is that is odd, how it's unlike how it used to be when I could function normally.

My main exercise for years has been one-legged exercises, where I just move the other around. I've become very good at it, and the difference between when I can use my muscles close to normally, and when my energy is too low to hold on more than a few seconds, is really shocking. It's the difference between someone with significant experience doing similar moves, like ballet or martial arts, and someone who hasn't exercised in years, and never exercises similar to this. Just untrained Bambi legs. Except I have been exercising this for years, I have become proficient enough at it that it's very noticeable, though not always.

My ability to use it varies a lot, to the point where the loss of function erases all the skills gains. My leg muscles are really showing it, they're visibly trained. And yet I cannot do any more of it over two years of daily training with about 98% compliance. Whenever I do those exercises, after a few seconds my trained muscles just suddenly give out. Sometimes it's barely a few seconds. At my best I can do the same exercises with the control of a kung fu master for 20-30 seconds. Never more than that, and everything in-between. It's so damn weird.

 

[AliceLily]

This is what happened to my handwriting when I got ME/CFS. I remember my work colleague admiring my signature on my timesheet before ME. I did have a really good written signature but that changed after ME. I have not been able to complete my full signature anymore. I can only just get near halfway and then I have to scribble wildly the rest in swirls. Very disappointing and it feels very weird as well. I just cannot keep the flow, it shuts down. It's like a sudden disconnection. Bizarre.

 

[Sean]

Not always but probably more often than not I get quite fast transitions between (relatively) okay and (definitely) not okay, over several minutes to maybe half an hour. It can be shortly after activity or delayed by a few hours.

Was quite startling and confronting early on before I got to know the pattern. If I have had a busy day (by my standards) then I plan for that quick decline happening later in the day.

Lying down with minimal stimulation can often take the edge off it fairly quickly, as long as I don't get active again for the rest of the day.

Does not happen much in the other direction, improvement is almost always more gradual and less dramatic.

Don't experience it so pronounced as much these days with decades of experience at managing the whole show, and smoothing out the dynamics. But this phenomena has always been a feature for me.

 

[ryanc97]

My muscle max output is the same, but the stamina is greatly reduced.

 

[Mij]

It's been interesting doing leg lifts the last 3 years and planks for the last 4 months. I couldn't do 4 seconds of planks 3 months ago, and now I'm up to 2 minutes easily. I'm very impressed with the muscle tone in my arms. My leg muscles don't increase, tone a bit, but no increase in muscles from walking. I lose function out of the blue, it can resolve in a few hours, or last for days/weeks. It's definitely not PEM. Like @AliceLily describes about being unable to write, it's like there is a disconnect between the brain and muscles.

 

[Creekside]

This sounds like a problem where the root cause will be something you didn't even consider. Not a muscle tissue problem, or blood or oxygen supply, but maybe a kidney issue, or more likely some brain cells. I keep remembering a story about someone's car that wouldn't start. The obvious place to check would be the engine, but that wasn't it. A taillight had burned out, and the safety computer decided the vehicle was unsafe to drive without both taillights. I can imagine some part of your brain concluding that exertion for too long causes unpleasant PEM and blocks you from using those muscles.

 

[Violeta]

"When communication between nerves and muscles is disrupted, it can lead to sudden muscle weakness."

"An efferent nerve (commonly called a motor nerve) is a pathway that carries signals away from the central nervous system (brain and spinal cord) to target organs in the body. These signals tell your body to perform actions, such as moving a muscle or secreting a fluid from a gland."

"Alpha motor neurons (also called lower motor neurons) innervate skeletal muscle and cause the muscle contractions that generate movement. Motor neurons release the neurotransmitter acetylcholine at a synapse called the neuromuscular junction."

 

[bobbler]

I'm used to my normal healthy body from before working in a way in which when I am exerting muscle effort, like holding something, instead of gradually failing, doing the shaking thing, muscles just fail outright. I never noticed this until recently, but since I did it's really remarkable.

There is no gradual loss of function, it just snaps off. It happens quickly, too, but it's how sudden the loss is that is odd, how it's unlike how it used to be when I could function normally.

My main exercise for years has been one-legged exercises, where I just move the other around. I've become very good at it, and the difference between when I can use my muscles close to normally, and when my energy is too low to hold on more than a few seconds, is really shocking. It's the difference between someone with significant experience doing similar moves, like ballet or martial arts, and someone who hasn't exercised in years, and never exercises similar to this. Just untrained Bambi legs. Except I have been exercising this for years, I have become proficient enough at it that it's very noticeable, though not always.

My ability to use it varies a lot, to the point where the loss of function erases all the skills gains. My leg muscles are really showing it, they're visibly trained. And yet I cannot do any more of it over two years of daily training with about 98% compliance. Whenever I do those exercises, after a few seconds my trained muscles just suddenly give out. Sometimes it's barely a few seconds. At my best I can do the same exercises with the control of a kung fu master for 20-30 seconds. Never more than that, and everything in-between. It's so damn weird.

Yeah, I struggle to remember the before right now (I can, but I sort of have to sit and actively select the mental videos from certain times and play them back)

But I do remember being moderate and going to the gym. And eventually learning this new thing where after x amount of eg stretch on a leg muscle then I'd actually get a thing exactly as if it was 3 sharp tugs on a rope, except it was the muscle inside my leg. And because on a later occasion years later where I went back and had a personal trainer (a female bodybuilder and knew her stuff on muscles etc) they were actually holding my leg and doing the stretch for me and their face when it happened! So I know it isn't me 'interpreting'.

So there is definitely something that is 'abrupt' going on in muscles, maybe as well as things that are less abrupt but more runs out faster type things. And it then takes x hours to 'recover' just to the point eg for an arm you can even just have in in its normal position and not having to be held by a pillow (nevermind being able to lift something like a drink) so it very much seems like it is a 'completely empty' type thing.

 

[Sean]

My muscle max output is the same, but the stamina is greatly reduced.

My muscle strength does not go at these times. It is more like exhaustion, than weakness.

 

[Midnattsol]

It happens to me to. Like a switch. My body just stops. For example I was out walking and suddenly I couldn’t anymore, no out-of-breathness, just lack of ability to move. Luckily I could sit down where I was and sat there for about an hour and was then able to slowly shuffle home.

Most often when it occurs it happens very soon after I start exerting myself so the consequences aren’t that great, but I might be able to start walking across the floor and realize I’m not able to go the whole distance. It’s sometimes accompanied by a burning sensation in my muscles (especially my core), sometimes not.

 

[duncan]

Both muscle weakness and stamina for me can fluctuate. It's maddeningly unpredictable - and that's not even factoring in PEM. Neither is anywhere near to levels prior to ME/CFS, and both seem to be inexorably worsening, albeit gradually. But then, I am a senior getting older, so there's that, too.

It's striking to me how these muscle discussions - symptoms, frequencies, circumstances, timing - can mirror those you might encounter in channelopathy communities.

 

[Peter T]

Could this be an example of very very ‘rapid fatiguability’? I wonder if we see this in other conditions that feature rapid fatiguability such as MS.

I think I have experienced something like this in the early years of my ME, though that is now so long ago I can not be certain I am remembering correctly.

True to form, perhaps something of a tangent, I wonder if there is a cognitive equivalent? I do find at points my brain feels like it is in overload. This comes to a head very quickly, and if someone asks me to make the simplest of decisions I just want to scream. This happened this week while my care assistant was here. Towards the end of her time she was wanting me to say what to do next, and I could not respond, just having to lie down in silence. However after a couple of hours I was back to ‘normal’ at least normal for me.

When I experience what I call rapid fatiguability, as long as I do not get to the point of triggering PEM, I seem to find, regardless of modality, that a few hours rest resolves the issue/blockage/overload which for me is what distinguishes this from PEM which takes days or even weeks to resolve. Obviously when in PEM things are much more complicated, in deed I think I only became aware of this pattern when I was no longer working, at times when I was moderate rather than severe, when I had a handle on my food intolerances, meaning my activity levels were sufficiently low to have periods when not in PEM or when not very fatigued.

 

[duncan]

True to form, perhaps something of a tangent, I wonder if there is a cognitive equivalent? I do find at points my brain feels like it is in overload. This comes to a head very quickly, and if someone asks me to make the simplest of decisions I just want to scream. T

Judgement, reasoning, memory, word-finding, decision making - all, for me, can fail, abruptly, in noticeable fashion, just from a casual interaction or sudden emotion; or, can slowly erode during the course of a typical day merely from daily wear and tear. Very similar to what happens when employing various muscles.

I could replace @rvallee's thread title with "anyone else's brain fail immediately instead of gradually?"

ETA: "abruptly fail" is too strong. Quickly and meaningfully decline might be better. It's like suddenly being hit with a severe headache, but without the pain, and with more cognitive limitations.

 

[Trish]

I certainly have rapid muscle fatigablity, and have had from the first day of my ME/CFS. That was one of the most disabling things for me right from the start and led to much adaptation to my lifestyle, particularly rapid onset of need to sit down when standing or walking. The only difference as my ME/CFS has become more severe is how far I can walk and how long I can stand.

The other one I noticed early in my ME/CFS that has become an increasing problem is my handwriting has become much worse and I'm unable to sustain it for as long.

 

[NelliePledge]

I don’t get sudden loss of muscle or brain power to where I fall or drop things or suddenly can’t think or speak at allfor an extended period.

For me the needing to sit urgently or brain block - losing the thread, or words just not making it from brain to mouth - It is when I’m doing stuff in recognisably “risky” situations like standing in a queue or chatting with more than one person in a social situation for a lengthy period.

Which I am presuming is because of my severity of ME being moderate and that I’ve never been higher severity?

I have my rollator now so I’m not getting into the needing to sit situation because I am already sitting down. I do have brain block situations but it is brief and used as a sign to me/all time to stop chatting & go home or send visitors home.

Brain block was definitely worse when I was trying to work - after my (at home) working day of 5 hours I would have to lie on the sofa for an hour before I could do anything. But again that was cumulative not immediate.

 

[Axel]

I rarely experience a sudden stop. The most debilitating symptom is that my muscles feel heavy, like a piston under intense pressure. If I push myself, I get tachycardia, dizziness, shortness of breath, a dry mouth, or increased brain fog.
When my limbs aren’t heavy and I can keep up with physical activity, I start to feel pain all over my chest, as if a chainmail shirt were tightening around me, and I get stomach ache. The lymph nodes in my jaw swell up, and my face feels hot.
(That’s lovely.)
Then, at rest, the pain and pressure in my face slowly subside, and several hours later my hands and feet start to ache. The next day I tend to feel rather weak and numb.

I really feel as though something is following a circuit and can’t be flushed out.
Moving from organ to organ, with each one saying that this isn’t where it can be treated, eventually the brain decides to send in the PEM cavalry and crack down on everyone.

 

[rvallee]

I wonder if there is a cognitive equivalent? I do find at points my brain feels like it is in overload. This comes to a head very quickly, and if someone asks me to make the simplest of decisions I just want to scream

Yeah there's something pretty similar cognitively for me. When I'm able to do a little bit of light cognitive effort, I'm able to until, very abruptly, I no longer can. There is no dial that slowly goes down, it's an on/off switch. Then I just stop and rest because there's no point.

 

[Midnattsol]

For me the needing to sit urgently or brain block - losing the thread, or words just not making it from brain to mouth - It is when I’m doing stuff in recognisably “risky” situations like standing in a queue or chatting with more than one person in a social situation for a lengthy period.

Which I am presuming is because of my severity of ME being moderate and that I’ve never been higher severity?

I'm not sure. I can still get these episodes, despite my general level of functioning being very high. It can happen for just a short period of the day, or like in the winter when we had a cold spell I was unable to walk very far for the duration (and for the few days here and there when the temperature was not as bad I could again walk).

I can't recall having the same cognitively, though I have had acute brain fog.

 

[Creekside]

So there is definitely something that is 'abrupt' going on in muscles,

I object that the problem hasn't been proven to be in the muscles. It could be in the controlling systems for the muscles. There seems to have been plenty of studies looking for signs of physical problems in muscles of PWME, but none that I know of have shown anything significant. If your arm muscles can lift 20 kg, and then suddenly stops being able to lift even 1 kg, it should be fairly easy to find physical signs of the cause ... if it is actually in the muscles. If you can't find it there, then logically, the problem is elsewhere.

 

[wigglethemouse]

It happens to me to. Like a switch. My body just stops. For example I was out walking and suddenly I couldn’t anymore, no out-of-breathness, just lack of ability to move. Luckily I could sit down where I was and sat there for about an hour and was then able to slowly shuffle home.

Same effect here. Started as soon as I became severe. The other day I tried to walk to the post box just outside the garage to check for mail. It felt great to try that after all these years. I got there fine. But as I started to walk back my legs had trouble moving. I had to sit and rest for a bit and then very slowly make it back. It didn't feel like muscle weakness.