Stamina/energy

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Willow

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Joined
Dec 28, 2006
Messages
102
Reason
DX MND
Diagnosis
04/2012
Country
CA
State
East Coast
City
NA
I don't want to sound like I have no mobility or anything but I have found in recent months although I am mobile, I have less and less stamina to go on in the run of a day and I am not quite sure I understand this. I have had issues all along with stairs and stepping in particular....but this is beyond that.
I know with LMND that the muscles are slowly dieing and I should watch for my balance etc. but I was not aware of the almost complete lack of energy as the day goes on. I have always been an active person. As I noticed this disease happening, I did notice some changes in my activity....but this summer has been far more than I anticipated to say the least.
Am I just in denial? Does your body really just tire beyond what you can make it go in so many ways?
Don't quite know how to describe it all.
 
Oh yes. Fatigue. When I finally got a power wheelchair loaner I went from walking about with a rollator around the house to moving so much more easily. I had no idea that walking was wearing me out. I noticed the fatigue was getting worse every month during last year when I was still working. I was using a cane then and walking between building for a meeting put me into a heavy sweat. Kind of like I had just finished a big workout in the gym. I started driving between buildings then and as I had a handicap permit on the car, I could park in front usually, and get in better. Stair? They kicked my butt!
So the PWC has greatly improved my life. No more walking everywhere. Naps are now a big item for me, partly routine, partly because I become tired in the mornings or early afternoon. Sometimes I just lay down for 30 mins and don't nap. Thats refreshing too.
 
Unfortunately, fatigue is a big part of it. Take breaks,naps and they have my husband on supplements. Sleepless nights can add to the fatigue. Your body will tell you when you need to rest.
 
The fatigue and lack of stamina and energy is so tough. People don't realize.
 
Know how you feel! It was described by someone else on the forum that our remaining muscles are trying to work so much harder to make up for the damaged ones...
 
my legs are extremely stiff...dr says that all my muscles are trying to fire at once. makes me really tired...naps are a good thing
 
Everything we do is labor intensive and it adds up. Naps are good.
Ed
 
My neuro is helping my fatigue with Mestinon (.5 3x daily with food). It is generic and cheap, ad it has made all the difference in my life. Only side effects are GI, as I found out the one tie I took it on n empty stomach. If it's going ot help, you should notice within a week. Worth asking your neuro
 
I find proper rest, and proper nutition is key.

Get it, almost feel normal(fatigue wise)

Don't get it, fee like the grumpy, tinman.

Good luck,
Casey
 
Thanks everyone for the tips and support. I see the neuro again in Oct and will talk with him about it.
I eat a very healthy diet, lots of fruite, veggies, fish, whole grains etc. I also take vitamins daily.
I think I will have to learn to do a bit, rest a bit.... more frequently.
 
Willow

I think perhaps you need to rethink your approach to nutrition; unfortunately the healthy diet you are on is fine for healthy people but probably not for you. Put briefly, the aim is to get as many calories as possible, as easily as possible, into you; all that chewing veggies and whole grains is tiring you out.

I suggest you talk to an ALS aware nutritionist, and in the meantime remember that you probably need not worry that a t-bone steak or two is going to to damage your health...
 
Endeavor to per severe (hang in there). Is the neurologist your only Dr.? You still need to involve a general practitioner and other specialist to regulate your body functions. My Neurologist is teamed up with my Respiratory Dr., Internist, Cardiologist, and GP. Although each of the other doctors openly admit that they are not well-versed in ALS, they each know and specialize in what works for different body requirements. Each of my doctors say that they are learning from each other as well as learning from my progression. As you only mention your neurologist, I question if you are getting a well-rounded medical advice.

The settlement you mentioned may be responsible for much of your fatigue. (Do some research on cause and effect.) Also research the side effects of your other medications. Some may say, "May cause drowsiness" or "do not operate heavy equipment", (it is a PWC considered heavy equipment?) Or any other restrictions.

If there are mentions of these types of side effects, regulate when you take medications. In my case, I have grouped all of the "May cause drowsiness" medications to the evening so that they will aid in my going to sleep, for the evening. Allergy pills, antihistamines, and such contribute to "may cause drowsiness" and as a result you feel fatigued.

What I'm saying is that you need to address all medications and supplements to more than one medical specialist. Try to get them teamed together working on your special needs.
 
Hi again and again....thank you for taking the time to respond and for the support.
While I said I eat healthy....that really doesn't mean I don't eat. It truly means that I have had issues in the past with cholesterol and high blood pressure that I try to deal with in a dietary form. So far it had been working except that now I am noticing a lot of fatigue and weight loss (12-15 lbs in the last year)
I am NOT immobile, I still am able to get up every day and do things...I just find that by noon or so I am starting to tire more. I have actually napped in recent weeks which is a very foreign thing for me to do. That is why I posted this question.
So am I to expect that my days will now be more limited and I should plan more naps? I am only 54, I still should have so much more energy/get up and go. I am embarrassed to speak to people about my lack of energy because to see me everyone would think things are going well. So...I keep letting them think that.
Wow I really am in deInial in so mIany ways.....but I really don't know how to proceed from here.
I should add that we are a smaller community and we do no have an ALS specialist, I do have a neurologist that has taken me/this on. But we don't have people I could talk with about eating etc. unless I run into difficulty with swallowing. Which i have NOT....this is still just LMND. Just looking for help
 
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Good luck to you on your stamina/energy situation. Glad to hear from you.
 
Willow

The high blood pressure and cholesterol levels are relevant to people who have possible heart disease which can be managed by diet. Kudos to you for actually doing that; a close family member who's a medic tells me that very few people carry through on it, hence you are pretty special in your determination to take responsibility for your health. But a healthy diet for someone at risk for heart problems is a long way away from a healthy diet for someone battling ALS.

I don't have ALS; I have severe bronchiectasis in both lungs. The closest analogy to me which you are lkely to have come across is someone with cystic fibrosis. My healthy diet is lots of protein, lots of fat; ie lots of calories, with veggies and whole grains as rare treats because the effort involved in eating them far outweighs the nutritional value to me. People visiting me in hospital have tut-tutted about the way all these people are eating fast food and I have to explain to them that we are not like the rest of the world; it is a healthy diet for us.

I need lots of protein so that's the first priority, and steak marbled with fat is doubly beneficial because of the calories. French fries are pretty good as well since they are vegetables, just vegetables with lots of calories!

That is pretty close to what someone with ALS needs, so it's worth a try, particularly because you don't have specialist expertise to guide you. All I can tell you is that my diet is one approved for people with my own terminal disease; losing weight is something which my team takes very seriously indeed, and the aim is always to reverse it.

Adequate high calorie intake is essential because that is the fuel you need to burn in order to do anything. Resting is good, but you may need to rest less if you can up your fuel intake to give you the energy you need to do things.

And I do understand the problems with the invisible disability; you look ok on the surface so people think you must be ok, and you can carry on with the denial. Last wek I attended a retirement party and people told me how well I look; for the most part I did not explain that I do 8 hours a day of treatment and that if I skip even half of that I'm likely to be in hospital pretty rapidly. So far I'm still out of hospital so I may have got away with it!

The people here are amazing; I have no doubt that if their ALS aware nutritionists say T bone steaks are a no-no they will be onto me like a ton of bricks, and provide better advice. But even though you don't have much back-up in your smaller community you do have it here, and you will keep on getting back-up from the truly amazing people here for all of your journey. I wish you the best of luck on your way, and if there's ever anything you want to know about lung problems feel free to pm me. If all else fails I'll consult the close family member who's a medic so I don't say anything more than usually dumb for me...
 
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