Husband not feeling right

[Shawnlee]

A few weeks ago, my husband started feeling really weary and tired most of the time.

Let me backtrack. He is taking medication for high blood pressure, diabetes, anti inflamitories, lasix for leg swelling, riloteck, got a steroid shot in his right knee, and is also taking some herbal medicine one in particular is turmeric.

He has a slow progressive ALS diagnosis, he is pretty much paralyzed on his left side. Says he feels weaker everywhere. He cannot seem to stay awake during the day, but cannot sleep comfortably at night (back hurts).

My question is: is this a new direction in his disease or is it something else. He can't do any physical exercise anymore and can't walk or stand for more than 5 minutes.

Would appreciate any help

 

[Atsugi]

I don't think the sleepiness is due directly to ALS, per se. But there is an indirect link. I think the advancing paralysis causes him to over compensate with other muscles, so they hurt, so he gets poor sleep, so he is tired in the day.

Not sure if your doctor would recommend a sleeping pill in this situation. Probably just take some pain killers.

 

[Shawnlee]

Thank you. I believe you may be right.

 

[patoyeah]

I have read other complaining about fatigue and some complain of brain fog with it... breathing issues might cause fatigue also.

Take Care,

pat

 

[Shawnlee]

I guess I didn't mention the brain fog have been monitoring blood pressure and sugar levels, but not o2 levels. Thanks maybe we need to get a monitor for that also

 

[GregK]

The breathing issue would be CO2 retention. The O2 monitor will be less useful than a blood test
A quick venous sample can show CO2, an arterial blood gas will give the whole picture.

 

[bigmark1954]

If he is not sleeping well as you stated, perhaps melatonin would help. It might be worth a try and it has mostly no side affects compared to Ambien, Trazadone and pain killers.

Fatigue in ALS is common, I think all of us have it as a primary symptom.

 

[lgelb]

Some of those drugs can cause fatigue, and as ALS progresses, he might need different doses.

If he's not on BiPAP, this might be a good time to start as he might well sleep more deeply. You feel pain more when you're not sleeping well.

Best,
Laurie

 

[Shawnlee]

Thank you all will consult with next appt. by the way he is currently taking melatonin

 

[KimT]

Pain perception is higher when you don't get enough sleep OR when you are depressed. I've been through both. That said, I have very bad pain because some muscles are working for other muscles as I keep trying to do "normal" things.

If it were me I would get ABG draw and make sure I was using BiPAP at night and in the day, if necessary.

 

[jayswife]

My husband has days where he doesn't feel well but cannot explain what is going on. I notice more and more that he can't stay awake during the day too. He'll seem wide awake and then fall asleep immediately. I think it's the progression of the disease.

 

[GregK]

Jays wife, is he on BiPap?

 

[JimInVA]

Laurie and Greg get it... BIPAP!

 

[gooseberry]

Steve went from a 7 hr a night sleeper before als to a 14 hr a night sleeper after diagnosis....then he took naps on top of it.

Sleepiness could be carbon dioxide, not enough calories or fluids, or poor sleep. I would call your doctor so he can be seen sooner rather than later.