Fatigue

[LindaB]

It hit me today just how debilitating fatigue is. A previously simple trip to the GP for a blood test( hopefully pre Rilluzole) I found exhausting. I was already tired & hot & bothered so that didn't help.

I just wonder if anyone has tips for managing such overwhelming tiredness? Apart from regular rest....

I feel I should be doing the Neuro rehab exercises more but it's a vicious circle when so weary.

Sorry I sound a bit whiney...well more than a bit😂

[matthew55]

All I do is sit on my trusty sofa removing clothing and not moving for a while. 😁😘😍🤗xx

[LindaB]

All I do is sit on my trusty sofa removing clothing and not moving for a while. 😁😘😍🤗xx

Sound advice matthew55 😂😂😂 I had a nap it helped 😴👍

[Deb]

Hi Linda,

Sorry youre feeling fatigued... im sorry too that I think its just part of MND. I do have regular blood tests to ensure there is no other cause like a vitamin deficency so its worth checking.

I tend to conserve my energy for things that are important to me for example seeing family. Obviously if I have a hospital appointment thats not possible but if I have a busy day I don't arrange anything before of after.

I try to 💤 😴 well and I feel so much better after a good night but again that's not always possible so I try not to stress about it.

I'm no expert on exercise and MND and im sure it is beneficial for some people. However, I would rather use my energy on things I enjoy .

Take Care and rest up!
Love Debbie x

[LindaB]

Deb thanks Deb I think you're probably right fatigue being part of MND. I will have to learn to plan ahead. I think today the effects of a poor nights sleep got the better of me. After a quick nap I felt better. I've followed other threads too and ordered supplements that might improve my energy levels. We live in hope🤗😘

[Mary C]

Hi LindaB,
initially after diagnosis 12 months ago I didn’t seem fatigued.However as MND progressed in my legs and muscle wasting became more evident in my legs , bottom etc I do get fatigued.I also more recently get swollen feet as mobility is down to a couple of metres with frame and supervision or wheelchair.
I do a few exercises in the morning on the bed with legs and arms really to try and reduce spasticity .
I do lie on bed if possible for an hour reading in afternoon or morning as need to elevate my legs.
I love seeing friends and family so I factor that into my days.
Fatigue can be part of MND so advised to maintain nutrition(poor appetite these days) plus fluids.
OT said to see it like a bank of energy and with each task it takes more effort than those without MND .If having friends in afternoon then I have a quieter morning..it works for me.
Hope you work out what suits you best and hot weather wears me out even though I do very little.
Best wishes
Mary

[denise]

Stephen always complains of fatigue. He rests but there doesn't seem to be any stored energy. I make sure he's fed and watered. He sleeps well. Extra vitamins. It doesn't seem to make a difference. He wants to do things and go places but I know it will be too much for him.

😟

[LindaB]

Thanks Mary C sounds like you've worked out how to plan using your energy carefully. I need to give it some thought and as you rightly say work out what's best for me. Takes some getting use to but I'm learning. 😘

[LindaB]

denise it's a balancing act it seems. 🤗

[EvelynMW]

I certainly get more out of breath when dog walking; however, when ive done it several days in a row, i get better. I must get back to the aerobic sessions i was doing before - youTube supplies walking workouts, Leslie Sansone, is good for beginners. There will also be sitting exercise programs on youtube and FREE. Take a look, keep as much of your movement as you can.

[LindaB]

EvelynMW thank you...yes I do think I need to try to increase fitness even in a limited way. I'll start with the Neuro physio exercises - which I have to admit I've been bad at doing. 👍

[EvelynMW]

LindaB The OT just gave me hand exercises! When i was first diagnosed i was doing 30 to 45 minutes of 'aerobic' exercise a day, so i got told there was nothing else i needed to do - and i havent reported that i am doing far less!

[matthew55]

Don't get carried away with exercise as it can now do more harm than good. Fatigue one of the first symptoms of MND/ASL 😍🤗😘👍xx

[richard]

I feel I should be doing the Neuro rehab exercises.

Can you elaborate what these are or point me in the right direction? Thanks

Richard

[LindaB]

richard my therapist from the Neuro rehab team formulated some simple exercises
1.ankle movements. Basically whilst lying down rotating each foot clockwise x10 then anti clockwise x10
2. Heel raises. Standing holding a chair or kitchen work top. X10
3. Calf stretches. Holding a chair take one foot back to stretch calf..alternate
4. Laying down...tilt pelvis lift bottom slowly x10
5. Laying down knees raised...reach left hand to right knee x5 repeat opposite side
6.Lay on left side right leg straight left leg bent....lift right leg up keeping it straight and back. X10

Also some balance exercises
Stand in one leg aiming for 10 seconds...then swop
Simple squat x10
Place feet together close eyes...balance.

These to be completed little and often.

In all honesty I need to do these and keep saying to myself I will tomorrow. 😏

These are formulated for me and where I'm at mainly right foot weakness...foot drop. General core weakness.
They may not be suited to others although it's nothing too strenuous.
Her advise was also if your doing something else such as going for a walk...no need for the above. Also if feeling fatigued don't complete.
Currently my motivation is zero but I'm working on that🏋⛹️🤸🎯