Poll: what's your pattern of muscle weakness?

[me/cfs 27931]

To varying degrees, I have felt weak every day following a viral infection at age 15. Every single day. I first noticed how weak my legs were when I tried to restart running a couple months after getting out of the hospital.

My weakness has always been completely symmetrical, but affects my legs more than my arms. This may be due to years of my pushing myself to run and walk prior to diagnosis.

When rested, my muscles typically respond pretty well, for a short period. Then why don't I like to physically exert myself?

1. I simply feel weak and my body always wants to rest.
2. Physical exertion can feel very unpleasant. But it can also be pleasant... hard to tell beforehand how it will turn out.
3. Physical exertion can trigger neuro symptoms such as stumbling, brain fog, fatigue and dropping things. Again, hard to predict beforehand if this will happen or not.
4. Physical exertion can trigger next-day PEM full of neuro and immune symptoms, plus mostly bedridden weakness and fatigue. PEM often includes headaches, but generally not significant body pain (which I now realize is unusual, but the CCC allows for this for those with viral onset).

My ability to generate significant strength on demand has had many doctors (and psychiatrists) over the years disbelieving my reports of muscle weakness. They do a quick strength test and tell me I'm normal.

A few (very minor) abnormalities recently showed up in nerve conduction testing, and I'm currently on a trial of Mestinon right now for eyelid droop and difficulty with facial expression (although my Myasthenia Gravis blood tests were negative). The majority of my breathing weakness, dropping things, and stumbling ended when I started low-dose Naltrexone a year ago. I LDN.

I regularly do short bursts of activity after I've rested. Even running up stairs or doing a dozen pushups. These short bursts of exercise actually make me feel better (if I'm rested at the time).

But I can't sustain physical activity or get aerobic without repercussions, with a need to rest and recline after any exertion to avoid the usual symptoms and next-day PEM.

 

[jpcv]

Mostly thorso, upper arm.
Thoracic wall fatigue during PEM ( intercostal muscles)
Legs are the least affected

 

[Diwi9]

I'm much like @jpcv.
- upper arms
- thoracic region

I do intermittently get acute weakness in my lower arms and digits...which sucks when I want to be typing on PR!

 

[Mij]

@arewenearlythereyet I couldn't even imagine painting a ceiling! I painted the wall around my kitchen counter top today and quite frankly I'm never doing this again. I had chest and forehead pressure just from lifting my arms a little.

 

[Jenny TipsforME]

triggered an autonomic response

This is interesting. Did they give any further explanation of this?

depends on the the type of muscular fiber( cell) you are born with.

On my 23andme report they put me in the sprinter category. This amused me because I've never been good at running, even when well. It would mean that I have the fast twitch muscle type though I think. I wonder if this fast fatigability is bad in combination with ME?

 

[arewenearlythereyet]

@arewenearlythereyet I couldn't even imagine painting a ceiling! I painted the wall around my kitchen counter top today and quite frankly I'm never doing this again. I had chest and forehead pressure just from lifting my arms a little.

Yes I did try doing our ensuite bathroom a while ago which is quite small 2 meters square.....was a nightmare since it involved stepladders and a lot of reaching ....took me a week to do pacing. My wife will probably have to do it next time.... like with so many things.

 

[daisybell]

I get a lot of fatigue and cramps in my abdominal muscles, and need to lean back against a chair when sitting or I get exhausted..

 

[Jenny TipsforME]

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."

I wonder if this pattern can be caused by ME mitochondrial dysfunction, without also having mitochondrial myopathy as a sort of separate entity? Do people with this proximal weakness (eg upper half of arms and legs) find you benefit from supplements related to mitochondria?

 

[arewenearlythereyet]

I wonder if this pattern can be caused by ME mitochondrial dysfunction, without also having mitochondrial myopathy as a sort of separate entity? Do people with this proximal weakness (eg upper half of arms and legs) find you benefit from supplements related to mitochondria?

Yes...d ribose and creatine helps with stamina enormously. my own theory is that bursts of power are more of an issue than gentle slow movements. This is noticeable more in the most frequently used muscle groups for this (biceps, shoulder, quads) for most everyday actions (walking, climbing stairs, running, lifting, carrying). The burst of power deplete the mitochondria quicker than slower movements. I guess if you did a lot of quick bending everyday (rowing?) then this would affect abdominal muscles similarly? Just a simplistic theory based on my own observations.

I don't think that's the whole story by any means. I think the strength of the muscle in terms of effective mitochondrial distribution may also have an effect and this may vary if you are female or male.

 

[Jenny TipsforME]

bursts of power are more of an issue than gentle slow movements.

My proximal muscle strength varies wildly from not being able to use at all (stairs aren't an option, I can't raise my leg from the floor) to working fine in short bursts but never prolonged, slow movements. This diference between us could be related to the fast/slow twitch genetic predisposition? Or orthostatic intolerance issues?

For example, when I can use the stairs, I actually do better by rushing at them getting upstairs quickly. This also indicates that my proximal weakness doesn't leave permanent damage when it fluctuates.

 

[arewenearlythereyet]

My proximal muscle strength varies wildly from not being able to use at all (stairs aren't an option, I can't raise my leg from the floor) to working fine in short bursts but never prolonged, slow movements. This diference between us could be related to the fast/slow twitch genetic predisposition? Or orthostatic intolerance issues?

For example, when I can use the stairs, I actually do better by rushing at them getting upstairs quickly. This also indicates that my proximal weakness doesn't leave permanent damage when it fluctuates.

Yes I think OI is definitely part of it and I am mild and not bed bound yet. I definitely have a very weird cardiac response. Couldn't get my heart rate down yesterday just sitting in a hot room....it was only lying down that fixed it. I think this muddies the water somewhat.

I realised a problem with arms when I moved a bedside cabinet from our outbuilding to the front of the house for collection. This must have been what 8-10kg max and I struggled to carry it the 7 meters or so. I carried it at waist height resting on my hips and stopping 2 or 3 times for a rest. I felt so weak after it and crashed a day or two later. At the time I wasn't using my heart rate meter so it's possible this had something to do with it, although my response to creatine and other supplements is making me wonder?

I need to refresh my memory on fast and slow twitch muscle fibres. From memory though we should have both types and these can be modified with exercise/ training? Do you have a scale reference as to how significant the difference is between people from a genetic point of view?

 

[Jenny TipsforME]

.it was only lying down that fixed it. I think this muddies the water somewhat.

Except I also have OI issues and often need to lie flat (I was thinking maybe you didn't). I'm definitely not mild though so my OI kicks in quickly.

Do you have a scale reference as to how significant the difference is between people from a genetic point of view?

No it was just in response to someone else mentioning the fast and slow twitch difference.

 

[arewenearlythereyet]

Except I also have OI issues and often need to lie flat (I was thinking maybe you didn't). I'm definitely not mild though so my OI kicks in quickly.


No it was just in response to someone else mentioning the fast and slow twitch difference.

Yes I definitely have OI just not sure on the severity or whether it's pots. I can stand still for about 10 minutes before having to move around/ sit down so it's definitely not really bad. My heart rate is weird...I keep it below 100 from a base rate of 60, but it just tends to creep up over the day if I don't lie down. I had a viral infection without fever the other week which left me sofa bound for 4 days, but my heart rate was over 100 just sat or lying down?

I will definitely read up on muscle fibres in any case. This thread has convinced me to get a muscle biopsy to rule out mitochondrial disease and tilt table test for POTs though. I'm always in a bit of a quandary to accept what I've got or to carry on ruling things out.

 

[ladycatlover]

I can't reply to your poll as I don't fit any of the options. I break down more into above and below the waist.

My arms are mainly OK, and I seem to have sufficient strength in them, but can't keep going for long if exerting - eg I'd have probs beating up a Victoria sponge or peeling and chopping a lot of veg. And now I'm finding scissoring dead flower heads off in garden is giving me hand ache. But mostly I can manage if don't over exert - can type, write, draw. Though my handwriting is deteriorating drastically recently, was always fairly illegible, but now it takes forever to handwrite much so anyone else can read.

On standing after about a minute my lower back (I do have spondylolisthesis L5/S1) starts aching like fury and I become bent over. On walking my legs shake,thighs ache, and after a few metres I find it hard to lift my feet sufficiently and they drag. Think possibly right foot is worse than left, but that may be down to always using walking stick on right?

This probably isn't particularly useful to you Jenny! Sorry about that!

 

[mhrps]

I have severe muscle loss. It concerns my trapezius, upper arms, neck, face and legs. My back (apart from trapezius) is actually intact.
I do also have lazy sphincter muscles without incontinence.

 

[wastwater]

No muscle problems at all ever for me even after sustained rest for weeks I'm often surprised how my muscles are in such good condition i.e. Not deconditioned

 

[Sushi]

Sushi said: ↑
triggered an autonomic response

This is interesting. Did they give any further explanation of this?

Yes, though I don't remember much except that he said that climbing stairs uses muscles that will trigger an autonomic response (different muscles than walking) and that if any patient told him that they could climb stairs without any problem he'd figure that they didn't have dysautonomia.

As far as raising arms--something about raising arms above the heart level though I don't remember the details. He suggested work-arounds like, when using a hair dryer, sit down, bend over and rest your elbows on something lower than your heart.

 

[Gingergrrl]

Muscle weakness (24/7) which includes breathing weakness is one of my biggest problems that IVIG improves.

I don't feel general fatigue and can do quite a lot as long as I use wheelchair and accommodations b/c of the muscle weakness. In spite of improvements, I still cannot climb a single stair or lift something over my head (but I also have major autonomic problems).

It is very hard to know what is due to what (in my case).

 

[Mij]

Yes, though I don't remember much except that he said that climbing stairs uses muscles that will trigger an autonomic response (different muscles than walking) and that if any patient told him that they could climb stairs without any problem he'd figure that they didn't have dysautonomia.

That's interesting. I can climb stairs on days I'm feeling able to get out and walk. Other days I can't climb. I still feel I have some form of dysautomomia based on symptoms.

 

[jepps]

Viral infection effects muscle health:
https://medicalxpress.com/news/2017-06-viral-infections-decrease-muscle-health.html

Researchers at UC Berkeley have found unexpected effects of viral infections, a discovery that may explain why viruses can make people feel so lousy.

The Berkeley researchers discovered that control viral vectors actually changed the intensity of OXTR signaling, which diminished the regenerative ability of any direct descendants of these cells or tissues, thus aging them rapidly.

The study's data suggest that in addition to known pathological manifestations, viral infection may play a less direct role in decreasing the health and regeneration of skeletal muscle, bone, brain-psychological well-being and inducing obesity by skewing key cell-signaling networks that regulate homeostatic tissue maintenance.

"We are now working on a therapeutic mix that should alleviate this collateral damage of viral infections and this work in progress is promising," Conboy said.



Read more at: https://medicalxpress.com/news/2017-06-viral-infections-decrease-muscle-health.html#jCp