ALS Fatigue

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My husband has just suddenly in like two weeks become extremely exhausted 24/7 - not as though he needs to sleep but where he feels he has to lay down alot and would like to be able to sleep... this is new... it is common? It is an indicator of rapid decline? :(
 
There are many here far more experienced than I, but my first thought is... Is he getting enough oxygen? Have you talked to his doctor? This sounds like something you need to get some feedback on.
 
He was fitted for a bi pap but he struggles with it.. feels like he can't breathe and yawns continuously with it.. We do have an appt with a pulmonologist....

Just worrying...
 
The appointment with the pulmonologist is definitely a good idea and should shed some light. No, it is not a sign of rapid decline. If he is struggling with the bipap tell him to persevere, things will get better.
 
Thank you... he/we are pretty tenacious... just on occasion get overwhelmed... as we all know this kinda sort sucks!
 
On his fundraiser page for the ALSA bike ride, my 24 year old states in no uncertain terms that this "ROYALLY SUCKS" We may need t-shirts.
 
Two other possible causes could be dehydration or depression. Does he have good fluid intake? Depression starts in the mind but has many physical symptoms as well.
 
Hi Lorie,

How are you ? Wanda and I were thinking of you this morning , wondering if you are ok.

Hi SJPowers,

Fatigue in ALS is like a gas tank on the car , when you have no more energy , you must refuel. No more "keeping going" when you are tired.

Glen
 
Doctor put my husband on Provigil - it is used for sleep disorders but is also used for other purposes. It "masks" his exhaustion symptoms so is working well for him. Because of it, he is also awake all day so he sleeps better at nite.
 
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