So so tired

[Guest]

How do you all cope with fatigue. I'm constantly tired. Everything is an effort. There is a lot going on at the moment due the the adaptions we're having done to our home. So partly stress I think with the all the builders coming and going.
I take magnesium, vitamin c, b12, and just started taking guarana. Anyone got any tips!!??

[Ellie]

Hi Pink,

Yes, you're right in saying stress isn't good for you (I was going to say the builders are STILL there!!! but don't want you typing a stressful reply)

Do you wake up feeling refreshed? It might be an idea to do an overnight pulse oximetery test (at home) to check your oxygen saturation levels. The MND/Respiratory Clinic or MND Nurse usually organise this. The BiPAP settings might need to be tweaked to give you optimal benefit.

You could use the BiPAP for a hour or so during the day to see if it gives you a boost of energy - maybe after lunch when digestion can zap your energy reserves.

I don't know if you've seen a Dietitian to know how many calories you should be taking and from which sources, often we need more calories just to stand still!

You're probably doing too much too time to be selfish and conserve every bit of your precious energy - accept any help on offer.

Take care,
Love Ellie.

[AndyB]

Hi Pink
You're not alone, I feel shattered all of the time.
I have a CPAP machine which helps me to sleep well, but I still wake up feeling like I should be going to bed not getting out of it.
I've been like this for a few years now, since before my diagnosis .

Love Andy

[Ellie]

Hi Andy,

I hope CPAP is a typo and you're actually using a BiPAP

Ellie x.

[AndyB]

No typo Ellie.
My breathing is currently unaffected by MND. When I went for a breathing assessment following my MND diagnosis, my wife mentioned to the consultant that I snore and wake myself up. Monitors showed that I was just short of actually having sleep apnea, so since I had MND and my breathing will probably deteriorate over time they suggested the CPAP would help, and it does. My wife now complains about the noise of the CPAP machine!!! I can't win ��

Andy X

[Guest]

Hi everyone. Im unable to use my nippy at night as it wakes me up. I use it when I have a nap in the day though. I try to eat healthy. Just wondered if anything helps.And yes Ellie builders are still here. They started on the wet room on hand 2nd. Also had kitchen fitters and driveway done in last few weeks. X

[Ellie]

Hi Andy,

You seem to have a slow (or slower than normal) progressive form of MND?? If your pulmonary function is normal and your breathing muscles are not affected, using a CPAP is fine.

However, if your breathing muscles are anyway weak, a BiPAP is recommended because different levels of pressure are used for breathing in (higher) as breathing out (lower). This bi-level pressure is very important in people with ALS/MND. The CPAP delivers a continual pressure only, which makes it harder to breathe out (against high pressure) thus its use is contraindicated in ALS/MND.

A BiPAP can be used for central sleep apnea too, so that's something to bear in mind for the future if your breathing muscles weaken.

Love Ellie.

[Guest]

mindfulness !!! for some that's prayer (type that word into a search engine and see what interests you) I do different things at different times , I tried colouring books, for some reason looking at flowers appears to work better !I don't know why !!!!and watching small birds move!!!
I wish I had the nerve to ask my GP if my level of potassium is correct! but I know I'll get the reaction that I do from most people .
hope this helps

[Guest]

Hi streetwise visit did a mindfulness course just before I left work last year. Found it very helpful.

[Ellie]

Oh Pink, it's such a shame you can't use the Nippy at night and boost your batteries for the day. I'm sorry, I'm sure you've tried everything.

It sounds like you'll have a great house for your needs soon - well worth the hassle!

Love El x

[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.

[Guest]

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!

[Guest]

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