So so tired

[AndyB]

Hi Ellie,
Yes I think my MND is relatively slow. I was diagnosed May 2016, it's mainly affecting my legs. I can still just about walk with a walking stick or crutches and I've had a few occasions of my hands locking. I also get fasiculations in my abdomen and chest. I feel as though I have rising damp �� as it spreads up my body. They're checking my breathing annually at the moment and I see my MND nurse each month and she always quizzes me as to how things are progressing. My legs have started to become painful when I'm in bed at night.

Like Pink I feel really tired all of the time and have to force myself to do things, this is how I felt before the MND was diagnosed. I just assume it's a symptom of the disease.

Andy X

[Ellie]

Do you know your exact diagnosis Andy? If you're towards the UMN (Upper Motor Neuron) Dominant or PLS end of the spectrum, you're more likely to experience worse spasticity - the leg locking symptom - and it could explain the slow progression and annual breathing tests. Whatever the reason, it's great that, 2 years on, you're still on your feet!!

Do you take any antispasmodic meds eg Baclofen? Gentle exercise (if safe to do so) such as swimming or cycling a stationary bike, can lessen spasticity.

Do you have access to a physiotherapist?

For bed - try putting a pillow under your knees to ease the muscle tone - or you might have to take meds at bedtime. If the pain is from cramps, try magnesium (careful, it has a laxative effect!!) or your GP can prescribe quinine sulphate.

Love Ellie.

[Pinkelle]

Had my appointment with respiratory centre this week and came home without the nippy! I wore some sort of oxygen test device on my finger the night before and they checked my blood for oxygen levels. They said they weren't bad. So they said they'd review me in 3months as its obvious I'm not getting any benefit from the nippy especially as it wakes me up. I just think I've got to put up with fatigue being part and parcel of the disease!

[Pinkelle]

Had my appointment with respiratory centre this week and came home without the nippy. I wore a device on my finger which checked my oxygen levels and they checked my blood. Turns out my oxygen levels aren't too bad so as the machine wakes me up they said they'd review me in 3 months. I'll have to put the fatigue down as part and parcel of the disease.

[AndyB]

Hi Ellie,
Sorry for the delayed response.
I've been told that my MND is the ALS variety. I have seen a physio a couple of times and she has given me exercises to do to stretch the muscles. I'm not taking any meds for the discomfort yet as I'm trying to avoid them as long as possible. I'll give the pillow under the knees a try.

Love Andy

[Ellie]

Hi Andy,

I understand the hesitancy and reluctance not to take meds, but don't be a martyr for too long, especially if your sleep is suffering...

It's all such a balancing act isn't it?? (I'd make a great tightrope walker now if it weren't for this damn ALS )

Love Ellie.

[Ellie]

Hi Pink.

It's a pity they took away the Nippy as you'd been using it during the day.

Our oxygen and carbon dioxide levels during the day can be quite different than overnight levels, but if you weren't using it you'll be no worse off.

Hope you can find something to reduce your fatigue - there's always chocolate !

Love Ellie.

[Pinkelle]

Hmm... Chocolate, now you're talking! And you can get it without prescription!

[Terry]

Or get your dietitian to prescribe Chocolate Fortisp 250ml drinks, they are quite nice and helps fill you up giving you a balanced diet.

I take them out with me just incase I can't get suitable food or we get stuck in a traffic jam.

Love Terry

[Pinkelle]

Dietitian? Don't have one of those. I'm eating OK, but have lost my appetite slightly.