Feeling lousy

[getstevewell]

My husband was diagnosed a little over a year ago with Bulbar onset ALS. The last week or so, he has been really tired, feels lousy, has no energy and feels like a truck ran him over. No other symptoms. Is this a normal feeling with ALS? Could it be an issue with his breathing? Has a cough assist he doesn't use and a NIV is our next step. Any comments would be helpful.

 

[Nikki J]

Fatigue can certainly happen and breathing could be a cause. Especially if he is retaining co2. However ,especially with a sudden change, you need to consider other things. He could well be sick. Can you get him to a doctor?

 

[rmt]

I would get him a covid test. That is similar to how my parents (who do not have ALS) felt when they got covid.

 

[GXTrex]

I agree. We tend to forget that PALS can have other issues besides ALS. My dad got significantly worse over a few days last year. Luckily we brought him to the hospital and he had a UTI and pneumonia. These acute issues were treatable and he went to rehab.

 

[getstevewell]

He already had covid. I suppose he could get it again, but doesn't seem to have any other symptoms. Starting to get winded after walking now too.

 

[affected]

Whether it is breathing issues or something else, please do get him checked as soon as you can.
Build of CO2 is horrible and can be addressed with bipap. Leaving it longer could see his breathing decline faster, or give him higher risk of falling and injuries with ALS are game changers.
If it is something else, it could be best addressed early too.