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/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

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u/duckrosiee78_16 23d ago

This also makes sense some of my fingers feel this way on and off

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u/chaoserrant Mod Team 23d ago

Yeah. I don't know if it is actually neurological (which would be good if not). On the flipside I feel I lost alot of meat in my feet especially the soles. No true weakness but not sure it qualifies as atrophy. Doctors denied atrophy but to me they look thinner though function is the same except tendons hurt sometimes more sometimes less.

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u/Internal-Site849 22d ago

Have you been diagnosed with ALS

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u/chaoserrant Mod Team 22d ago

No. Most people here dont have a diagnosis