Poll: what's your pattern of muscle weakness?

[Jenny TipsforME]

On my last neurology appointment I showed a pattern of muscle weakness. It would be useful to know other people's pattern before my next appointment.

I already have a ME diagnosis so if my pattern is fairly typical this maybe doesn't add much. Dr Google doesn't bring up CFS or ME though and does suggest other diagnoses (for this particular issue, I do otherwise fit classic ME). I don't want my doctor to be mistakenly diverted if it is fairly typical, or (more likely?) have nonME symptoms dismissed as ME.

Please answer this poll, even if you don't have any weakness. I want to get a general sense of people with ME's experience, there appears to be very little official research on this.

Also please don't be alarmed by other possible diagnoses if you Google too. The point is I don't know what is the typical pattern in ME.

 

[Dechi]

I have generalized muscle weakness, 24/7. My EMG have shown no muscular abnormalities whatsoever. So the problem is not with the muscles themselves. It's got to be in the cells.

 

[Snow Leopard]

My initial onset was severe weakness in both calf muscles (acute flacid paralysis), but these days weakness seems to be evenly distributed around my body and is directly related to level of fatigue. I have done the 2 day VO2MAX/CPET study and my muscles just didn't have the same force on the second day, and my ventilatory threshold and VO2MAX was substantially lower on the second day.

An example is driving, my usual muscle memory for changing gears in a muscle car fails when I'm more fatigued (due to prior exertion), leading to lack of clutching, gears crunching etc despite my brain trying to send the same signal it has done many thousands of times before.

 

[lansbergen]

Worse during flares in the direction of the perifere from the spots I feel the inflammation.

 

[Neunistiva]

I have severe ME/CFS but never felt muscle weakness was my problem. I do have muscle fatigability, after repeating same the movement several times

 

[Jenny TipsforME]

@Dechi @iansbergen @Snow Leopard @Neunistiva thanks. I'm going to hold back on saying my pattern until more people have responded. It's not the same as any of yours though, so this might be interesting.

 

[EJaneS]

I have a definite pattern of weakness in upper arms & thighs so I lift onjects with the muscles in my forearms & when driving I use pedals "from the ankles" keeping quads still. I can't maintain an action e.g. Can"t hold a drink without having to put it down. Resting it e.g. on the arm of a chair doesn't work as hands can't grip for prolonged period.
From rest I can produce a burst of energy but it fizzles out rapidly. Usually describe this as "I can mive a wardrobe but can't hold a cup of tea".

 

[EJaneS]

I have a definite pattern of weakness in upper arms & thighs so I lift onjects with the muscles in my forearms & when driving I use pedals "from the ankles" keeping quads still. I can't maintain an action e.g. Can"t hold a drink without having to put it down. Resting it e.g. on the arm of a chair doesn't work as hands can't grip for prolonged period.
From rest I can produce a burst of energy but it fizzles out rapidly. Usually describe this as "I can mive a wardrobe but can't hold a cup of tea".

 

[EJaneS]

I recall seeing a swimmer talking about fast twitch & slow twitch muscle. I wonder if I still have a bit of fast twitch function but have lost slow twitch.

 

[dangermouse]

My wrists and hands are affected. My upper arms and thighs are also affected. Mostly to some degree all the time, worse during PEM.

 

[Valentijn]

Anything can get tired out if I use it too much, but it's worse for my proximal muscles (upper half of limbs). It's especially noticeable in my thighs and shoulders, and I even had a major thigh muscle stop working for about an hour after overuse.

 

[tinacarroll27]

Mine is mostly upper, so I can't hold arms up and my back is very weak. but the weakest of all seems to be around the waist. My legs are ok but I find it difficult to stand for very long because of the weakness in my trunk.

 

[Old Bones]

Anything can get tired out if I use it too much, but it's worse for my proximal muscles (upper half of limbs).

@Valentijn I'm the same. My upper arms and shoulders are particularly bad. I still haven't recovered from a few range-of-motion movements done at a rheumatologist appointment two months ago. Similarly, it took five months to perceive any improvement after using my arms more than usual -- an effort healthy people wouldn't even notice. Afterwards, my upper arms ached with fatigue, particularly when using them lying down (eg. when positioning an ear bud in order to listen to recorded books in bed). Almost three years later, my arms still haven't recovered entirely. What is it about this position that makes using my arms so difficult?

Here's a link to an interesting research article:

Mitochondrial Myopathy in Follow-up of a Patient With Chronic Fatigue Syndrome
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4748504/

It includes several references to proximal muscles, including this:

"Symptoms may show wide variability, from relatively nonspecific exercise intolerance or painful muscle cramps caused by exercise to muscle weakness in a predominantly proximal distribution."

 

[Mij]

@Jenny TipsforME I saw an M.E specialist many years ago to get my diagnosis and he asked me if I muscle weakness or muscle fatigue. I wasn't sure so he did a few tests and determined I didn't have weakness and that it was muscle fatigue. Fast forward 26 years later I'm still not sure whether I have weakness at this point.

I'm not in the same shape and have less muscle mass than when I was 29 so lifting things feel heavier of course, but I still don't feel I have weakness.

 

[Jenny TipsforME]

The poll is surprisingly mixed so far.

@Old Bones yes you've hit on the type of thing Dr Google is informing me about.

 

[Jenny TipsforME]

muscle weakness or muscle fatigue

I think these can feel pretty similar but be quite different medically. I get both on and off.

 

[marjojo]

Definitely lower arms and legs. Difficulty holding things, drop food between fridge and micro wave... Fatigue increases in course of day - by late afternoon (lying on bed) legs feel as if they were fusing feet up to knee. Mermaid syndrome?

 

[Sushi]

Weak upper half of limbs eg difficulty climbing stairs or lifting up a hairdryer

My autonomic specialist explained to me that this was not muscle weakness but that both climbing stairs and lifting anything up triggered an autonomic response that was the cause of the problem with those movements.

 

[arewenearlythereyet]

I have muscle fatigue all the time and joint pain mainly in hips and knees depending upon activity.

The muscle weakness is mostly upper body for lifting and carrying. I've put upper limbs for my response and ignored the all over option since that's fatigue rather than weakness? I hope that's right?

I struggle to hold the weight of my arms above my head (e.g painting a ceiling is definitely out, but so is holding things steady for anything longer than a minute. Holding my iPhone to my ear is also challenging so I tend to prop my elbow when at home. Walking while holding the phone is pretty difficult so I adopt a weird alternating from arm to arm thing and hope I can fake listening to the conversation in between changeovers. I guess it's shoulders and biceps that are the biggest one for me.

Drying my hair is not a problem since there's not much of it left.

 

[jpcv]

I recall seeing a swimmer talking about fast twitch & slow twitch muscle. I wonder if I still have a bit of fast twitch function but have lost slow twitch.

probably yes, because it depends on the the type of muscular fiber( cell) you are born with.