feeling terrible with no cause- advice?

[Gracious99]

Hey everyone,
I've been a member here for sometime, just reading your posts and getting advice quietly, but I haven't seen any posts on what my husband seems to be going through right now. He says that it's not in pain really, but that he just feels terrible all over. He sits with his eyes closed, won't talk really, won't move, just sits for hours on end. Sometimes he will doze off, but when he wakes up, he feels just as bad. I've tried to get a decent description, but he says it's not like the flu (body aches etc) not area specific, just an overwhelming terribleness that won't go away.

Sometimes these "episodes" last for a day, sometimes two, this one is on day four. He is still eating, uses a bipap at night, and has some mobility (walker and wheelchair as needed), but he just says he feels so bad he wishes it would just be over all ready.

There doesn't seem to be anything I can do to make him more comfortable. Any suggestions?

 

[Green Queen]

Gracious I have no advice whatsoever sorry. I just wanted to reach out... Be assured there are some very knowledgeable PALS and CALS here.
You and your beloved are in my prayers for an answer for this problem.
God bless, Janelle x

 

[Barbie]

Occasionally my husband will go thru periods like this too. can't pinpoint what it is but just bad all over. I think it is just the disease flaring up, as we have always gone thru ups and downs with it...as you said, it can last for a day or two or a week. I encourage him to sleep as much as possible and try to be extra nice and gentle with him. give him extra B12 totry to boost his energy level as well.

 

[Gracious99]

Thank you both, so hard to watch him suffer and not be able to help him at all, just hold his hand, which I know is all he needs from me. Breaks my heart.

 

[gooseberry]

Steve says there are a lot of days he just doesnt feel good. Occasionally he will have a day where he gets up and you can see ghe old sparkle in his eyes....those days are getting more rare. He describes it as a general all over not good feeling. Very hard to describe like his body is weighted down.

 

[MaxEidswick]

>I've tried to get a decent description, but he says it's not like the flu (body aches etc) not area specific, just an overwhelming terribleness that won't go away.

maybe anti anxiety meds?

btw used to live in yucaipa a life time age

 

[Gracious99]

Max, he does take Xanax for anxiety as needed, when he has these episodes he takes quite a few. Funny that you used to live here, I love our little town!
Barbie, I'll put some liquid B vitamins in my list, the ones I take are huge, he wouldn't be able to swallow them, thanks for the advice,
He began to feel better this afternoon. I stayed home from work to hang out with him, that seemed to make a difference for him I have been pestering him to go outside and enjoy the springtime weather, finally today he agreed, and we went for a nice long neighborhood walk. I even got to hear him laugh, it was so nice, he thought it was funny to watch me try to keep up with his speedy power Wheelchair!
I am so greatful that you all responded, thank you!

 

[Loverly]

i second the b vitamins. we all take liquid b12 methylcobalamin, which is supposed to be easier for the body to metabolize. Even a blueberry smoothie helps to improve my mood and energy some days.

my PAL uses cannabis in a number of forms. She reports that it makes her feel less weighed down by her body and mood. It also takes away the twitches and some of the muscle pain.

jen

 

[DreamsEnd]

My pals reports similar symptoms - primarily all over at night but daytime too, in his arms. If you have a good Neuro, call them. Ours is recommending Ambien for sleep. Pot, whatever works!

Sherry

 

[MaxEidswick]

>Ours is recommending Ambien for sleep

me 2 plus klonopin if choking ...

 

[gooseberry]

They took Steve off the klonopin because it depresses breathing and have him on hydroxyzine pamoate. This helps him sleep....guess everyone is different.

 

[affected]

Sadly most of the meds that work well can depress the breathing, so the doctors weigh each individual situation up.

Often small frequent doses don't have a large affect on the breathing and so they are used effectively.

 

[gooseberry]

They were really worried about the klonopin for Steve since his breathing is so impacted. Although they did offer a med that could give him a four hour erection.....he had no sense of humor about that.....I had a good laugh.

 

[Gracious99]

Oh my gosh gooseberry! That's hysterical! Raymond's not taking sleeping medication yet, he naps a lot during the day, but has real trouble sleeping at night, doesn't turn the tv off until past midnight most nights. I, however, need my beauty sleep (lol) so I bought myself a pair of earplugs and told him if he needs me he could hit me with a pillow!
He takes Xanax for anxiety, but refuses to take any anti-depressants, even though he needs them. He's used medical marajuana for a while, but it drys his mouth out too much now, and he doesn't use it anymore. So much medication! And I'm sure there's more to come, sigh.

 

[MaxEidswick]

>Although they did offer a med that could give him a four hour erection

hmmm ...