Tiredness, pain and discomfort with MND

Many people living with MND said they tired easily and found trying to do too much in one day could be exhausting. Sometimes the fatigue and the physical effort of keeping going could make people feel quite uncomfortable or achy. Several had had to learn to slow down and reduce the amount of activity they planned for a day, but it could be frustrating for people used to an energetic, busy life. A few said they tried to ignore tiredness and just keep going, but others recommended frequent rests. Trying to work through tiredness may not suit everyone, as it may tire the muscles and lead to feeling worse the next day – it has to be an individual choice.

She tries to plan only one thing a day. She advises people to take their time and to rest between…

Age at interview 58

Gender Female

Age at diagnosis 55

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Well, I don’t know how strong I’m going to be. I do get tired more easily now. And I have to think, if I’m going to go out in the morning I don’t want to do anything in the afternoon. And if I’m doing something in the afternoon I take it easy in the morning. My breathing’s getting a little bit more restricted now. And I think, I can’t type any more very well, so I’m going to have to use voice-recognition software. And again, if your voice is going and your breath is going there’s a limit to how well you can use that. So I’ve just got to see how much I can cope with, really, I think, and pace myself. Because I’ve found all along, if you try and do too much then you can tire yourself out very quickly. And I would say to anybody whos got it, ‘Take your time. Always take your time and don’t rush. And don’t let anybody else rush you. And give yourself a little rest between doing bits of things. And a little rest will let you recharge your batteries and then you can carry on a bit longer. But I hope to continue writing and using the Internet and things like that, just to keep myself looking outwards rather than looking inwards.

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Tiredness is like a veil coming down. She gets so exhausted if she tries to do more than one thing a day that she feels physically uncomfortable.

Age at interview 53

Gender Female

Age at diagnosis 51

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Oh, the fatigue is, you go a level – well, part of it is using muscles that don’t want to do it, do anything, because obviously Ive got, you know, you get that. But part of it I think is some kind of neurological thing. Say I, I go out, a simple thing, you know, a lunch or something with a friend, or something like that, I can do that, and then like a block, a sort of veil comes down, and I cant take any more in, and I cant do anything. I would come back here and Id turn off the telly and Id turn off the radio and I would try and sleep. Because the body wont absorb any more, and that’s why you can only do one thing a day. you’re here today, that will be all thatll happen today, pretty much. And it could mean by tonight that I’m desperately, almost, almost uncomfortable, but still sitting here. Not quite, but nearly at a point of, whew, you know, like – I think even last night I was doing something, I went into town in the day, that’s right, and I was sitting here at one point last night and I thought, Whew, I don’t know. Am I going to just be able to just continue watching the television, or is it just going to just be like a, a thing that’s just too much? And I sit here and I think, Oh please, please just, just let me leave, just let me finish this programme before it feels like I cant take any more. Or I’m frightened that [son] might say something to me and I might – not that I have, because I never do with him – but that I might snap or something. Oh, and I think, Well, thank the Lord [son’s] not a demanding child, because he isnt. And I think, Well, thank God, he’s not four years younger, because, you know, hed be, he, you know, hed be wanting something.

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He thinks it’s important to fight MND and make every day count. But sometimes tiredness hits you…

Age at interview 60

Gender Male

Age at diagnosis 57

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I would say the main message is given by the MND Association, ‘Make every day count. It isn’t a rehearsal. And I suppose the other thing is fight it, don’t give in to it.

Mmm. Do you, you clearly feel quite strongly that you fight – it’s a, it’s quite a…

Yeah.

…determined thing for you.

Yeah.

Yeah. Are there, are there times when you feel you can’t fight it?

Yeah. MND is a weird disease. Most of the time you can fight it. There are times when I would describe it as hitting a brick wall, and you have to rest, sit down. At those times, listen to your body, because it is a brick wall, and unless you’re aware of it you can’t get through it. It maybe lasts throughout a day, but listen to your body. But generally fight it.

Mmm. When you were told it was PLS, did that kind of give you extra fight, or how did it feel being told?

Certainly there was a – I won’t say relief – but it did give me extra strength to fight it, to live life as best as you can, as normally as you can. And I think normal is the word you’ve got to use in every day situations. Be as normal as possible.

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When she’s tired she feels the best way to deal with it is to just ignore it and keep going, but…

Age at interview 54

Gender Female

Age at diagnosis 52

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Because they say that with cancer it’s a positive outlook, don’t they? And, and I’m sure it must, it must affect you. Because sometimes I think, ‘Oh, I’m really tired today. Is my disease progressing?’ And then another day I can go to the gym and do two hours with no problem. So I realise that it’s just how my body feels at the time and whether I’m a bit overworked and overtired. So I just really ignore it. And even if I do get up in the morning and I really struggle to get down the stairs to get out to the car to go to the gym, I just have to ignore it. I just have to bite the bullet and go. Because some days you lie in bed and you think, ‘Oh, wouldn’t it be lovely just to lay here?’ And then you think, ‘Well, you can’t do that every day. And, and people who are fully fit and have to go to work, they can’t do it every day, and I’m sure they’d love to lay in bed and do nothing. But you have to get up and, and live your life. And once you’re up and you’re out and you’re doing things, there are other things you can do. I, I think what I find most frustrating is I can’t do the things I used to be able to do, like the running and cycling and stuff. And I haven’t found a substitute, really.

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She has lost stamina and now gets very tired. After a lot of activity she tends to get muscle pain.

Age at interview 76

Gender Female

Age at diagnosis 75

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The main problems that I would say to anybody who has got MND, I would like to know – but I think everybody is the same – is the appalling fatigue. I have lost, I was a very energetic person, you can see, from climbing mountains and cooking and rushing, and I just lost stamina. I have lost energy and I just feel utterly exhausted, and of course the spin offs from that are that I get very severe muscle pain, because the only way I can get about is with a trolley and I want to go down the garden which is rather rough ground, and so I roar down the garden and back again three times a day, and then I get very bad shoulder pain. So I have got private physio and massage. I am pretty well through the history. And that’s it. One just copes with these things. But I am saying that it is the exhaustion which is even worse.

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MND is generally not a painful condition, but muscle stiffness can be uncomfortable at times. Some people experienced twinges, aches and cramps. (See also ‘First symptoms of MND’). Getting stiff after sitting still for a long time or trying to get comfortable in bed were common difficulties. On the other hand, some people said they had little or no pain.

He thinks it’s important for people to know MND is not painful. All he gets is the odd muscle cramp.

Age at interview 62

Gender Male

Age at diagnosis 53

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And perhaps it’s worth noting, I can’t speak for other people with the disease, I can only speak for myself, apart from the odd, very rare muscle spasm and cramp, I get no pain whatsoever caused from, as a direct result of having motor neurone disease. Don’t believe all you read in the press or what you hear on the television and radio is all hype, and it’s put out by people who know nothing at all about motor neurone disease. I may be proved wrong in the future. At the moment, after I’ve been living with it for nearly nine years, or it living with me for nearly nine years. I can honestly say I do not get any pain, physical pain from the motor neurone.

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He doesn’t get too tired unless it’s a very busy day, but he gets uncomfortable sitting in a…

Age at interview 56

Gender Male

Age at diagnosis 53

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I don’t get tired very easily. I’m rather a bit of a fighter. However, it is a hassle to have to require someone to feed me, wash me, dress me, put me in the wheelchair, and do all the other chores around me and for me. It doesn’t take so long, but with my limb muscles largely paralysed the minute that I’m moved I feel the need to stretch. It is, of course, true to say that obviously after a busy day – for instance I go for a walk and then later I’ve got something else on, and then I go home – I am rather more tired than I would be if I were well and able to get out myself. So tiredness comes into it. Worse, actually, are side effects such as sitting in the wheelchair for long periods, which causes discomfort in the back, the bottom part of the spine and the buttocks. That can be a major irritant and a major source of pain, which is why my nurse or carer spreads ointments on the affected parts to try to ease that situation.

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His wife got very tired but found it difficult to get comfortable in bed. Using different…

Age at interview 67

Gender Male

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So with the OT, the specialist nurse, all this equipment we were getting, the hot summer, if you realise that, you know, you can’t move anything when you’ve got MND so you’re in bed for, probably ten hours maybe, probably ten to twelve hours because Luise used to get tired, she used to go to bed about half past eight at night. And then of course, she’d be up quite early because she wouldn’t get a lot of sleep really and I used to have to get up in the middle of the night, in the latter months this is, and raise her legs up to her buttocks so she, she could be more comfortable. And then it was, so it was like a tent affect and then it would all of a sudden collapse and I’d have to get up and do it again. And, and of course the heatwave of 2006 was a nightmare for her because we, we really couldn’t get the right mattress.

So once again the NHS, their loan equipment department came up with various mattresses, some that you, pumps up with the aid of a, you know, it was, a motor. And you could have different sections of it pumped up and others not, you know, to, to make you more comfortable but none of these seemed to work. But in the end she stuck to the original one that she had, which was quite nice but we thought, the others might make her more comfortable but they didn’t really. And all sorts of different cushions for sitting on, because you know your muscles are wasting away, you’re all skin and bone really and, and things get very, very uncomfortable. But no she, she coped amazingly really. Never moaned, never complained, always joking.

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Pressure on her heels was uncomfortable at night, but a ROHO cushioned insert helped a lot…

Age at interview 34

Gender Female

Age at diagnosis 31

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Sleeping has been quite a crucial thing for me. If I don’t get a good night’s sleep, then everything is so much harder. And what I did start to come across, probably over a year ago now, was I was getting pressure points on my heels from where I was sleeping. The rest of me was fine, just my heels. So we resolved that eventually with my OT in New Zealand, sort of having a ROHO insert on my bed – the same as a little wheelchair cushion, but just an insert for the bed, and just to put that under my heels. And that was fantastic. And I slept brilliantly on that every night. So coming here and starting on a new bed was really hard, because ROHO inserts weren’t readily available through the district nurse. She either had a Memory Foam mattress or an air mattress, one of the electric air mattresses. So I tried the air mattress and just didn’t get on very well with it at all. I found it very noisy. I found it quite weird that air was, it was moving all the time. And also just that it wasn’t comfortable. It wasn’t, ‘Ah, ooh, I’m in bed. It just wasn’t like that. So I did try it for a couple of weeks, but I just wasn’t getting good sleeps on it and would wake up in the middle of the night and just long for my bed back in New Zealand which I knew worked for me. So in the end I said to the district nurse, ‘Look, this isn’t working for me. And she said ‘Well, tell me what did work for you and find it for me on the Internet, and we’ll get one. And sure enough she did, and that’s been brilliant. So I think one thing that I would say is kind of, ‘If you know you’ve got something that works, then fight for it and get it. And specially for sleeping it really does make a difference. And it’s allowed me to cope with things so much better now that my sleeping is back on track. And that there are more options than just the Memory Foam and a, an air mattress, and not necessarily more expensive.

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Getting plenty of good sleep and rest were important to many people. One young woman found it hard to sleep because of painful spasms in her legs, but her parents discovered that doing regular physiotherapy exercises for her helped. (See Interview 46 – Olivia and Peter’s story, and ‘Physical therapy and exercise with MND’ ). It is important to consult a GP, neurologist or palliative care consultant for advice on symptom control. There is medication which can be tried to relieve muscle spasms and cramps, which are common symptoms in MND. Poor sleep due to discomfort may also be remedied by consulting a physiotherapist who can look at positioning in bed for comfort, or an occupational therapist or nurse who can advise on aids to help with sitting up or moving in bed or different mattresses. A profiling bed (with independently movable sections) may be appropriate, and could also help with any breathing problems at night by helping the person to lie more upright. Some people said they preferred to sleep in a reclining chair for similar reasons.

Some people reported that starting on non-invasive ventilation had improved their sleep and made them feel much less tired. (See ‘Feeding tubes (PEGs, RIGs, PIGs) and ventilation’). This is because shallow breathing can lead to disturbed sleep, so people wake up feeling tired and feel sleepy during the day.

A few people found it hard to keep their eyes open because the muscles around their eyes became weak and tired. (This is an uncommon symptom).

It’s hard to open her eyelids when she wakes, and she can no longer keep her eyes open to read.

Age at interview 74

Gender Female

Age at diagnosis 72

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My eyes have deteriorated. My vision last week was less than 20/20. So it is not the vision, it is the muscle. In the morning it takes me a few minutes [inaudible] to open my eyelids. After a few times they open up. It is getting more difficult in terms of tiredness. I read three words very clearly and then it’s too much, so I give up.

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When his wife gets tired she finds it hard to keep her eyelids open and sometimes holds them open…

Age at interview 73

Gender Male

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There are various symptoms that my wife has developed. For instance she has lost control of her eyelids, and the muscles in her eyelids have now started to fail. And that means that she is having great difficulty in keeping her eyelids open. So this is another very serious problem, because obviously she can’t control her eyes. This happens particularly when she’s tired, so obviously we have to make sure that she doesn’t get too tired. And she has to hold her eyelids open with her hands at times so as she can see. So this is a very distressing situation and causes us, or causes her – well, does cause me obviously, but causes her great concern.

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People described other ways in which tiredness affected their daily lives. One woman said she needed a sleep in the afternoon, so she couldn’t easily attend support group meetings which usually happened then. Another noticed more excess saliva when she exerted herself, and felt it was nature’s way of telling her to rest.

Some had to give up work or leisure activities because they found it too tiring to concentrate and kept falling asleep. One man said ‘just sitting in the car can tire me. If we drive for more than three-quarters of an hour we have to stop and just let me have a little rest.’ Another felt the time had come to give up driving.

He gave up driving because he was worried that tiredness would make him lose concentration at the…

Age at interview 55

Gender Male

Age at diagnosis 51

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Are you still driving?

Not any longer. I gave up driving when I was in Toulouse. And, and simply by the fact that I couldn’t any more control my feet and they, they were completely – there was a foot drop. So it’s impossible at that time to drive a car. And because I, I know that with the fatigue it could be dangerous, I gave up this, the driving and so returned my licence [laughs].

Was that hard? For some people giving up driving is very hard.

I think when I was, when I reached this point it was already in my mind. I said – because I’m very thoughtful of others – I say, ‘A car is a vehicle which is a, which is a weapon. Even at 30 miles or 30 kilometres per hour it can kill someone. So what would be my situation if I killed a child because just I was not fast enough to, to brake or to change, or to turn, because my arm went astray etc?’ So knowing this, and because I was knowing better about the condition, I know the trap, the tiredness which just knocks you before you realise it. So I decided at that time that it was off. And when they request me to return my licence, I said, ‘No problem. Have it. So I was not at all affected by it.

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Tiredness and concentration are of course closely linked. Concentration can also be affected by changes to thinking and reasoning, known as cognitive change. This can happen for some people with MND. This is explored further in ‘Forgetfulness and thinking’.

The MND Association has a range of information sheets, including 11D: Managing fatigue.

Thinking and behaviour with MND

In the last few years new research has shown that more people with MND than previously realised experience changes to thinking and behaviour (called cognitive...