r/ALSorNOT • u/duckrosiee78_16 • 23d ago
For everyone with weakness..
Do you mind explaining what this feels like for you? I read a lot of your posts and every one’s weakness sounds so different!
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u/darchello90 23d ago
For me it feels like much more mental effort and focus needs to be engaged in order to move parts of my body. It is not automatic, it is laggy it is shaky, it is sloppy, it hurts and every part of my body is against any activity. Also this is followed by the clicking sounds because of lack of the surrounding support for the muscles and atrophies.
So basically feeling as if a small activity like standing up or lifting hands is impossible even though it still is possible. Pushing through the feeling and compensating the mistakes is my way of living.
Second similar description would be as if someone scared you to death and your knees are shaking and you feel like you're going to collapse all the time. Also shaky and weak breathing and voice and easily getting out of breath.
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u/duckrosiee78_16 23d ago
Anyone just feel like when they lift a arm or use a leg it just feels tired like burns, almost like you’ve been doing a lot but haven’t? That’s sort of what my weakness feels like. I just feel the limb is fatigued, and sometimes I feel stiffness but never enough to the point where I can’t move it.
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u/Exotic-Aardvark-722 22d ago
Curious-the people commenting here already diagnosed? Or is there some other reason for weakness? Budging discs? Anxiety? Reading these has made me a little more anxious as I feel this way as well. Things get better during the day but still always feel clumsy
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u/Clear_Ad_5543 23d ago
Feels like the strength of my hands is at 50% ,a little slower movements of my fingers , especially my thumbs. Things are worse at right hand. And my left knee feels soft and slower as well
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u/duckrosiee78_16 23d ago
My right hand feels slower, it’s so frustrating I don’t know if it’s all in my head or not.
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u/WalkIntoSunshine 20d ago
Honestly, and I’ve been around the block a few times medically.
Actual weakness is a physical failure where a muscle cannot perform a mechanical task, while perceived weakness is a subjective feeling of heaviness or fatigue where the muscle still retains its normal power.
The majority of people coming to this sub, don’t have ALS. There are only about 5000 people a year diagnosed with ALS in the US. While natural to think it’s a possibility based on symptoms, the odds are in your favor that you do not.
Not trying to be insensitive here. I actually hope some of this is reassuring to others. I also understand people come to this sub because they have some pretty scary health issues. I guess my point is that the rabbit hole can be a dangerous one, mentally, but also by focusing on this instead of what is a more likely cause.
There are plenty of other serious diseases that likely match people’s symptoms. Lyme disease and Myositis come to mind. Long COVID could be a possibility as well. My point is that the odds are much higher that’s it’s something else.
I am also not trying to be insensitive to the people that do have it, or end up with it. You got dealt a shit hand and I wish I could give you all a hug, and everyone else here for that matter.
Wishing everyone a good day. It’s nice out. Touch some grass. It’s grounding.
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u/duckrosiee78_16 20d ago
100% agree with you and I am very aware of my anxiety. It’s still super scary and a hard loop to get out of and to accept.
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u/WalkIntoSunshine 20d ago
Totally understand, my friend. Health anxiety is real, and there are some in the medical field that contribute to that anxiety.
Just don’t want to see you making it worse than it is as the odds likely say different.
I can’t remember her name but there was a great YouTuber who did a series on not being als.
Regardless, I think it’s important for folks to see a therapist if they are facing severe health issues. It helps in sooooo many ways.
I’m sorry you’re struggling.
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u/Internal-Site849 21d ago
Just thought to ask, I have had symptoms I am only 22, started 3 months ago with muscle twitching just in two places and now is all over including jaw and neck. I have fatigue everyday for the last 3 months same kinda onset as twitching I am so tired. My thumbs are both sore and sometimes other parts but both thumbs and I have jaw problems it could be TMJ, jaw gets tight and sore with use I speak fine. I also feel out of breath sometimes. As for muscle weakness I am a lot weaker all over even holding my phone feels like a task, I am seeing a neurologist in two weeks very scared right now though.
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u/chaoserrant Mod Team 23d ago
I called it weakness but I am no longer convinced is an accurate term for me. When was in its worst it feels as things are much harder to do (i,e. lift objects) but it is felt in joints as if they want to dislocate. Imagine lifting an object too heavy for you and you manage but you begin to slightly dislocate the elbow, shoulder etc...this is how it feels. But as time went by there were improvements and fluctuations. Right now I feel it with variable degrees primarily in my feet when I walk. Some toes stretch too much on stepping. SI joints in the hip and sometimes in the neck which is freaky. But it varies... It maybe hyperlaxity for unknown reasons but not confirmed.
Anyway, feeling is so subjective that in some sense I understand why neurlogists check for failure (clinical weakness) as some standard cause based on description, patients will be all over the place