Muscle Weakness

[TheLivingDead]

well as the title says muscle weakness.

my question is does yours just FEEL like weakness or is it physical weakness, for example were its hard to clench your fist tight or pick something up,

[firewatcher]

I have both types of weakness. During PT, I will get to a point in my reps that my brain is telling my muscles to move, and I try but it is like there is no connection---they just won't do it. Then, during the aftermath, the muscles are actually weak and my legs (in particular) will barely support me.

[janiedelite]

When I've gone to the neurologist, I do have diminished deep tendon reflexes in areas of my legs and arms which suggests an actual neurological impairment to those muscles. Also, when I did strength testing of my arms this summer during a PT eval the results were suprisingly weak. I'm lifting our toddler all day long so I didn't expect to find my arms were so weak.

However, I know that I definitely FEEL weaker when I'm exposed to regular POTS triggers (heat, stress, dehydration, etc). This type of weakness is more or less transient, and is dependent on my environment and not so much on an actual deficit of my physical function.

Just my experience!

[Tuesday]

Do you have difficulty clenching your fists after waking up in the mornings or after a nap? I have this issue and I read somewhere that it's due to whatever mechanism your body uses to keep you from acting out your dreams. Your body paralyzes the muscles to keep you from hurting yourself, and sometimes it does not resolve fully when you wake up.

[Chaos]

I too seem to have both types. There are days where it feels like my legs will barely support me or my arms can't lift anything, but if I really HAVE to do it, I can stand up or lift an object. (It's not weakness like a stroke patient has where they really can't move a body part.) It's weakness where yeah, I can stand up but not for too long without it just being too exhausting. And if I have to lift an object, it's a one time thing and not nearly as heavy an object as I used to be able to lift. My deep tendon reflexes are pretty much gone in my arms.

I've had days where just lifting my arm onto the table to try to slide food across into my mouth felt like way more effort than it was worth. Other days, I feel more normal but still weaker than I used to be in the sense that I can't lift and move what I could before I got sick.

[firewatcher]

I, like Chaos, can't lift nearly what I used to (I used to bodybuild/lift weights.) There are also times when my muscles (or nerves) just quit: stairs, jumping (like a trampoline or Pilates reformer with a jump-board.) I want to continue, but the muscle just won't respond and I have to wait it out. The fatigue after reaching that point is very difficult and often my legs will buckle.

I don't have the sleep paralysis/ slow reflexes that you mention.

[issie]

I have these same issues. I think some of it is due to neuropathy - what type - not sure yet. But, sometimes my legs won't pick up to get into a car. I'll stand at the side of the car and try and try - then I just turn around - sit down and physically pick my legs up with my arms and put them into the car. I think the nerves are not firing properly. It's like the signal isn't getting there. I too have real weak times as far as lifting strength or holding strength. There are times where I'll drop whatever I'm trying to hold even if it's light weight. There again, I think nerve signals are messed up.

[comfortzone]

I too have a major problem with weakness - that I'm trying to understand. Some say with EDS your muscles work so hard to stabilize joints that they have no strength for much else - others think my weakness is nerve or muscle damage from surgery, I do have the SFN and orthostatic intolerance as well.

After bilat knee replacements end of 2008 I could not lift my right leg. It took 7 mos. on a walker to learn to get it up a curb. I also as Issie even 2 years later - manually lift my legs on some days to get into the car, into bed etc... So why? The EDS doc says lots of people are like that -- and proprioception issues play a part as well as it is delayed your body tuning into the ground beneath your feet and what you are doing when you first begin to walk in the morning etc.

Physiatrist says maybe overstretched muscles in hip surgeries that will never come back. I can't rise out of chairs without using my arms a lot. Yet my arms are too weak to hold a blow dryer overhead. Pain? Deconditioning? Dysautonomia? Neuropathy and nerve damage? EDS? Heck if I know -- but it's debilitating and makes life miserable. I am determined to get answers --- I have to know -- while never strong in life -- I am now so weak ~ and like you guys I'd like to know the root cause so I can play my best cards.... I feel so old some days and nights.

[Guest tearose]

If I am sick with fever or after sleeping, the fluids seem to shift and make me swell.

It is harder to do small muscle tasks in the morning than later on.

[issie]

I'd never heard the term preoperctive disorder and looked it up and read about it - THIS IS RIGHT ON THE MONEY. I've had this my entire life and my nephew has just been diagnosed with it and my dad has it - we thought it was due to his strokes - but maybe not. I think there is a genetic component to this. My poor nephew is having trouble learning to read because of auditory and visual comprehension issues. He also has to be busy. I'm the type to shake my leg or fidget - I've done this FOREVER. I also noticed that there was a comment from someone that EDS can have similar manifestations - but there has to be a connection here. Thanks for sharing this observation.

[Guest tearose]

I too did a search on proprioception...

very interesting!

Do you have any links to share issie?

[Rachel]

For me, it is actual weakness. When I feel weak I have a hard time opening a jar, walking, holding something heavy, etc. There are times that the weak feeling is more intense than my muscle weakness actually is, but real muscle weakness is always there too. For example, sometimes the muscles in my legs feel like they are going to give out (even while I'm laying down in bed), but I can still walk for 50 feet or so before my legs actually give out.

Rachel

[green]

well as the title says muscle weakness.

my question is does yours just FEEL like weakness or is it physical weakness, for example were its hard to clench your fist tight or pick something up,

Do you mean... is the problem in the muscle or in the brain?

I am interested in all the responses you have received on this topic from people who seem fairly confident about the source of their weakness. How do you tell the two apart?

I have no idea which kind I experience. The only way of testing that I can envision would be to take four different measurements and then compare them:

(A) Not-Feeling Weak Strength Test

(1) Muscular contraction by means of voluntary effort

(2) Muscular contraction by means of direct electrical stimulation of the muscle

( Feeling-Weak Strength Test

(1) Muscular contraction by means of voluntary effort

(2) Muscular contraction by means of direct electrical stimulation of the muscle

If you lose more strength from A(1) to B(1) than from A(2) to B(2), then that would be evidence that the problem is more in the muscle, than in the CNS. But I think there are innumerable practical obstacles to performing this experiment.

Please let me know if you have another method.

[comfortzone]

I've been so frustrated with these concepts........ I've had doctors document I'm a 4/5 or a 5/5 strength and look at me like it's all in my head when I say I'm weak, have balance issues, etc....

Then I have ortho surgeons who say "your quads are weak - you need to stengthen them" - I'm like??? My right knee buckles but not my left - so I'm weak in just one leg? Why is that?

I've had a PT explain it as - you do have 4/5 - but the thing is your response is slow. So when I tighten a muscle it's super fast -- when you do - there's a time lag - you do it -- but you have no "Power".....

??? Then I'm told it's not neuro -- I'm strong or else how could I have managed to walk 5 miles one day =-> only to have someone says - just because you can walk doesn't mean you are strong.

I'm told my knee cap shifts outward laterally because of weak inner quads.

I nearly fell today losing my balance, my right knee is beginning to lock up, the left buckled for the first time ever yesterday.

An emg says chronic L5 S1 radiculopathy - yet no one tells me which of my symptoms would fit that description. Or why I have it.

I had a surgeon tell me recently if I have my knee revised I would have a tougher time than the first because I was on the walker for seven months - a revision would have me worse off. Why? Because I am not strong.

So yes this is frustrating - an EDS doc says you are weak because your muscles work too hard to stabilize joints. Yet you see EDS people with super-strength doing near impossible feats like gymnasts...

It's enough to drive you to drink........but in the end if I did that -- I'd just gain weight .... Hmmmm.... Might be tempting just the same -- then I could at least feel strong for a short while -- lifting that wine glass like Mighty Mouse...... just kidding!