Is there a way to counter the exhaustion?

[IhavePLS]

Mike,

If you've never seen this, here's one possible solution for you:

https://www.youtube.com/watch?v=jn5IBsm49Rk

Mike (the other) ...

 

[Mike in Maine]

Update my doctor is trying to get Provigil via the VA, TRICARE wouldn’t pay for it, should find out in a day or two. Also the VA is working the pump, down in Boston see how that turns out.

Mike
I like the spoon theory, my family is already using it.

Mike (Still tried, but worth it. The 3 yo Grandson is up for a visit and what a blast. Never stops moving)

 

[Clearwater AL]

Its such a balancing act to keep up with. I was told by a neuro (with an end twist), "If you don't use it - you'll lose it... sooner." Ok, how much is "use it?" What is too much "using it" versus compensating for the lack of endurance and strength? I'm trying but each month I notice I'm struggling with something that wasn't a problem before... like lifting a big bag of bird seed into the shopping cart. It caught me by surprise how I was struggling with both hands and arms getting the damned thing up and over into the cart. (I used to "one hand" the sack and toss it in the cart.) Several other things too. I tried to cut back on my Baclofen... nope! The cramps got worse again. I probably didn't answer any question but I think Kosmoskatten has a good approach... keep a diary or use one of those mini pocket tape recorders to better realize a pattern.

Oooops. Showing my age, I mean, "one of those mini digital recorders."

 

[avnl]

This is my first entry to a forum, though I have been a voyeur for the past several years. I am a caretaker, whose husband has ALS. He was originally diagnosed with HSP 8 yrs ago. There was some concern of ALS with one EMG suggesting LMD, but subsequent EMGs have been good, no fasciculations, length of time being symptomatic, and no muscle atrophy, ALS seems most unlikely. Alas we lost the HSP diagnosis with swallowing difficulties, speech problems and upper arm weakness. M has had a baclofen pump for 6 yrs. we have had no complications with it though it has not been the total answer, Michael must use a walker, resists a wheelchair, and has had some falls, the last resulting in a broken hip. I suspect without the pump he would be immobile. M does not regret the pump as before it was put in, he was the village idiot on his oral baclofen, sleeping through the days. With the baclofen not crossing the blood brain barrier, he is much more like himself. For us the pump has functioned without problems, but it is invasive, and I have read people's issues with infection baclofen withdrawal with muscle breakdown, that are quite concerning.
Not sure this was the best place to introduce myself, but ii thought I would bring up the pump as a solution to fatigue

 

[Tokahfang]

Welcome, Anvl!

That's not a bad point, another thing about the fatigue is working on how much of your daily resources it takes just to move. When I was still a hybrid crutch/wheelchair user, I always had much more energy to spare when I was on a wheelchair day.

 

[avnl]

This is my first entry to a forum, though I have been a voyeur for the past several years. I am a caretaker, whose husband has PLS He was originally diagnosed with HSP 8 yrs ago. There was some concern of ALS with one EMG suggesting LMD, but subsequent EMGs have been good, no fasciculations, length of time being symptomatic, and no muscle atrophy, ALS seems most unlikely. Alas we lost the HSP diagnosis with swallowing difficulties, speech problems,choking,and upper arm weakness, and bulbar lability. M has had a baclofen pump for 6 yrs. we have had no complications with it though it has not been the total answer, Michael must use a walker, resists a wheelchair, and has had some falls, the last resulting in a broken hip. I suspect without the pump he would be immobile. M does not regret the pump as before it was put in, he was the village idiot on his oral baclofen, sleeping through the days. With the baclofen not crossing the blood brain barrier, he is much more like himself. For us the pump has functioned without problems, but it is invasive, and I have read people's issues with infection baclofen withdrawal with muscle breakdown, that are quite concerning.
Not sure this was the best place to introduce myself, but ii thought I would bring up the pump as a possible solution to fatigue. Also my initial post it autocorrected the PLS to ALS and I am not sure how to edit. The quotation tab allowed me to edit, but I am not sure what I have done. And how this will be posted.

 

[MaxEidswick]

Welcome! There is a lot of support, help, and friendship here.

>This is my first entry to a forum, though I have been a voyeur for the past several years.

I'm not sure 'voyeur' is quite right, though!

Again, welcome - I look forward to learning from you experiences (most of my stuff is in my blogs).

Kind regards,

Max

 

[Mike in Maine]

Avnl
Welcome and thanks for the input, lookimg forward to the pump, looks like it will be done in Boston. VA is still working when.

Mike

 

[Clearwater AL]

For the guys, here's where PLS really makes life different... intimate moments with your loved one (sweeties). Everything still works but how the fun goes on until the fun is done sure isn't done like it used to get done. I've never thought or felt it was meant to be an Olympic style athletic event but when your torso, shoulders and arms have weakened that kinda takes being "on top" of the fun off the list of possibilities. Weak legs scratches a couple of other ideas off the list too. Then, the possibilities get even less if your sweeties can't be on top of things because of her leg/knee problems. PLS brings unwanted changes but it also brings creativity... in some areas. Remember, if you don't use it - you'll lose it... too. Ok, now let me read about some anxiety patient worried silly over some twitches. I'd bet their twitches surprisingly go away when the moment is right. PLS never goes away for any moment... improvise, adapt and overcome. For now.

PS. With utmost respect, consideration and prayers to those diagnosed with ALS.

 

[wendya432]

Oh my gosh, I sure wish I knew a way! I just went from having a root canal that got infected, to a week of vacation (which isn't really relaxing when you have young kids!), to having some horrible mystery virus that gave me sores all down my throat. On top of the day to day issues already. I feel like my body has just quit. I could probably slept for a week and still be exhausted! The only way I can keep up at all is with a daily nap and spacing out any high energy activities.

Al, I have to say I'm lucky to be the lady. We have days when I say, as long as you don't mind if I lay there like a dead fish! Lol! Ok so its not quite that bad, but I admit, I am not much of an active participant like I used to be. Sure changes things!

 

[Clearwater AL]

Wendy, thank you for commenting on my post. I spent a lot of time reflecting on that post before I hit the "Submit" button. I felt it is something that affects our lives now yet most men would rather not discuss it. I applaud you for commenting how it has changed your life as a woman too. Let's face it... it's real. I tried really hard to word that post so it would not be offensive but still convey the message (that is something few wish to speak of) that it does bring changes to our lives. It's part of it. I'll admit it... this has affected my sex life. But... everything concerning the subject still works. PLS (and ALS) does spare that. At first.

PS. To this day I still struggle with, "Is it affected or effected?" I think it's affected.

 

[Nuts]

"OK, now let me read about some anxiety patient worried silly over some twitches. I'd bet their twitches surprisingly go away when the moment is right. PLS never goes away for any moment... improvise, adapt and overcome. For now."

Al, I've seen this addressed a time or two before, and I think it's important. Thank you. Now it may be the late hour, but I think I may see a new test for DIHALS....

 

[AKmom]

Great topic. Matter of fact, I have recently been going through excessive exhaustion even though I have been doing less than I had been doing last year at this time. I have found myself drifting off into coma like sleeps for 4+ hours in the afternoons. If I try to fight it and push myself to stay up, I start to become very sluggish in my thinking and speech. My med doses have not changed to warrent this behavior. I actually do not feel well, like a knawing feeling that makes one say "I don't feel good", yet no other symptom to indicate viral or other type illness.

What to do about it when you really cannot cut back any further (besides the adding another drug)? I am guessing that its just accepting it. As much as I hate it, I have to accept it. I do all that I can while I still can, and yes, its not as much as I used to do, but I have to accept it as being my reality. It really prioritizes the things that matter for me. I say no to a lot of things, even ones I want to say yes too.

I too am one to just lay there and say go for it when hubby is frisky. However, on the extremely rare occasion that my systems decide to work normally and I get to have pleasure, it is always met with a painful cramp that includes a full body lock. Like what happens when you stretch and you lock up and become stiff all over. (used to happen all the time before I started baclofen).

 

[Bad Balance]

A cup of coffee with each dose of Baclofen .....helps for me