Changes in energy through a day

[jethro]

this was one of the first als symptoms. in the beginning i was inoperabile for a few minutes. today it is 2 hours.
it continued through a day while i took short afternoon nap (weakness in deltoids/shoulders).
today, when i wake up early in the morning (i feel weakness from elbow to shoulder) i can not function for at least 2 hours.
i got much energy through the day, so i can not sleep before 1 am.
is it standard hallmark?

 

[Doglady]

Hi Jethro-
That’s interesting but I wouldn’t say I get more energy at night. I’ve always been a “morning person”. I Wake up early and go to sleep early too. I get tired throughout the day due to any minor activity causing shortness of breath. Do you have shortness of breath? Are you a “night person “?
Mary

 

[jethro]

mary, thanks for reply. as i wrote, my FVC improved from 84% (at that time, 12/2019, i had shortness of breath, but i could tolerate it) to app 102% and it is steady. until when, god knows. i told that to my neuro and he didnt want to hear it saying "in als there is no improvement. if improved, it is not als. i have definite als (el escorial) as he says.
yes, i am a night person.
i have phases in getting tired, but nothing connected with my breath.
recently i noted that i start to shiver when temp. is low., at night, but my shiver is not connected to temperature at all. it comes only in the evening. when i realize that, i dont shiver anymore. right now i am in underpants (only) on a balcony (app 11 celzius now). really, i have noone to talk.
slurred speech, but i can swallow, so i use it to gain some weight. already gain 2 kg.
regards

 

[Doglady]

Yeah. Nothing is easy about this disease. It seems like you are trying to understand everything that is going on which is admirable. I’m not delving into the “why and how” so much. For me dealing with. “what“ happens is about all I think about. I’m just riding out the storm as well as I can.
Best wishes to you- Mary

 

[KimT]

I think everyone is different. It seems like I get exhausted but some days I have a lot more energy than other days and it doesn't coincide with what I've done. Maybe some of it is nervous energy.

 

[jethro]

@kim sure, agree about energy. i.e. after 5min of rowing, i dont feel exhausted like i am when i think about something completelly different. there are many things i dont dare to claim. i am my personal mouse. as mary says: " like you are trying to understand everything that is going on which is admirable."