It’s thought that sleep disturbances are experienced by around half of people with MS, yet sleep disorders are still under-recognised and under-diagnosed among this group of people.
We spoke to consultant neurologist, Dr Kirstie Anderson who has a special interest in sleep problems to find out more. Here she talks about which sleep disorders are more common in MS and shares her tips for getting a better night’s sleep.
The importance of sleep
There are no shortcuts, absolutely everybody and everything sleeps. It’s non-negotiable. Every night sleep is doing is a whole host of things.
I tend to teach it as the three Ms: sleep is really important to regulate mood, memory and metabolism. To have normal mood and normal levels of happiness, we need a normal amount of sleep.
One of the other really important things that sleep does for your brain is to essentially take you offline and reprocess and repackage everything you’ve learnt during the day. If you sleep badly for any reason it has a big impact on memory.
The other thing is normal metabolism. Your glucose and insulin are regulated overnight during sleep so if you sleep badly it impacts on metabolism and you’re a little more likely to be overweight.
The ‘right’ amount of sleep
There’s no such thing as a single number that’s right for everyone – it’s personal to you.
Sleep changes over the course of your lifetime. If any of us have had young children we know that they spend 16–18 hours a day sleeping when they’re new born. Teenagers need somewhere between 9–10 hours. By the time you get to your mid 20s, you’re probably set to where you’re going to be for the next few years. For example, if you prefer waking up early or going to bed a bit later that’s where you’ll be set from your 20s.
For most people, population studies say that we sleep about 7.5 hours. That tends to decrease a bit over time. By the time you are 60 or 65, when we measure healthy volunteers in our research, they sleep about 6.5 hours.
The key question I ask everybody is, “when you wake up do you feel refreshed?” If the answer’s “yes,” you’re probably sleeping enough for you. If you don’t fall asleep during the day and you wake refreshed, then whatever number of hours you’re having asleep at night is right for you. Don’t be put off by other people saying you need 8 or 9 hours or any other number. It’s really individual to you.
There’s no such thing as a single number that’s right for everyone – it’s personal to you. The key question I ask everybody is, “when you wake up do you feel refreshed?” If the answer’s “yes,” you’re probably sleeping enough for you.
Sleep disorders in MS – are they more common?
Research suggests sleep disorders are more common in people with MS.
Obstructive sleep apnoea (OSA)
If we take people in the general population who are over the age of 40, then one of the most common conditions we see is obstructive sleep apnoea (OSA). This is where your breathing stops and starts while you sleep. In the North East of England, about 10% of men and 5% of women over the age of 40 have OSA – so it’s pretty common.
When you look at people with MS in this age range, it increases to about 30%. One of the reasons for this might be weight gain – this has been linked to sleep apnoea. If MS has affected your ability to exercise, you might not be as active as you were previously and this may have resulted in a little weight gain. As well as this, some of the drugs for MS symptoms, such as nerve pain, can cause weight gain and can make you a little sleepier so you don’t feel like exercising.
If you’re worried you might have OSA, think about the following questions. Do you snore loudly? Do you wake with a sore dry throat? Do you not get through the day without napping, dozing or sleeping? If you’re answering “yes” to those three questions, you may want to talk to your GP. There really good treatments for sleep apnoea which can make an enormous difference to quality of life and quality of sleep.
Restless legs syndrome (RLS)
The other one we see in people with MS is restless legs. RLS runs in families and it’s linked to any condition that decreases movement. People with MS who are less mobile have a greater frequency of RLS.
People describe this as having a horrible, crawling need to move and stretch their legs in the evening or at night. You might find it difficult to keep your legs still. Simple lifestyle changes can help (e.g. avoiding caffeine in the evening and doing daily exercise) but medication can make an enormous difference if it’s severe.
There can be a temptation to label restless legs as MS nerve pain. However if you’ve got an absolute desire to move, moving makes the pain better and it’s much worse in the evening or the first half of the night, it could actually be restless legs.
Insomnia is one of the commonest sleep problems that GPs come across. By that I mean trouble falling asleep, trouble staying asleep and it impacting on the next day.
Insomnia isn’t directly caused by MS but it can be triggered by an initial physical or psychological incident. This includes things that would make us all sleep badly but with insomnia it doesn’t settle, poor sleep becomes more persistent and it’s difficult to break the pattern.
In MS, the trigger for insomnia could be the initial stress of an MS diagnosis or the physical discomfort of an MS relapse. This can be treated with a specific form of cognitive behavioural therapy for insomnia (CBTI) which can be accessed online and through self-help books with the support of a health professional.
Tips for getting a better night’s sleep
1. The night follows the day
Nobody thinks about what they do during the day having a big impact on sleep. Studies show that daily exercise (20–30 minutes of anything that gets you too out of breath to finish a full sentence) and experiencing some natural light during the day has a really positive impact on getting to sleep at night.
2. Anchor point in the morning
The key thing to do: get up at the same time every day. Lying in, wide awake in bed reinforces the pattern of being awake in bed and therefore bed becomes somewhere you don’t sleep. You can see that vicious circle. If you’re struggling to sleep, if there are long gaps in the night, the temptation is often to lay in bed waiting for sleep but actually that’s the worst thing to do.
3. Coffee, count the cups!
Everybody does the wrong thing with this. Everybody tells me in clinic, “my last cup of coffee was…” and they tell me the time. Stand back a bit and count the cups. If you’re up at 4–6 cups a day, you essentially have steady state caffeine in the system because your body takes a long time to break down caffeine. It can take 4–6 hours for some people, for others a little longer. If you are sleeping badly, count the cups, don’t think about the time. Then, have a go at reducing the number of cups you’re drinking each day.
Normal sleep is taken in chunks. Absolutely nobody – the best sleeper or the worst sleeper in the world – sleeps through uninterrupted for 7 or 8 hours.
What to do if you wake during the night
One of the most useful things my insomnia patients hear is that everybody wakes and nobody sleeps through; normal sleep is taken in chunks. Absolutely nobody – the best sleeper or the worst sleeper in the world – sleeps through uninterrupted for 7 or 8 hours.
When we bring people into the lab, we see that about every 90 minutes or so they wake. They may wake for a short time or they may wake long enough to remember it, but they all wake.
What we’re really dealing with in insomnia is not the awakenings but becoming cross and bothered by them, which is a different thing. We then ask people, “what are you doing when you wake up and how can we get you to return to sleep quicker?”
Keeping a diary can help. Is there a physical cause of wakening? You might gasp or snore or have a problem that relates to breathing. Are restless legs driving you crazy? Do you have a problem with your bladder? Are you waking up to pass urine six times each night? These are problems that can be treated.
If there is no particular reason for waking, but when you wake up you are really cross and your mind is racing, then we would look at behavioural techniques. If you’re wide awake, slinging the duvet around, you need to take that agitation out of the bedroom so you don’t lay there stewing. Leave the room, read a book, listen to music or do a word search until you start feeling sleepy and relaxed again, then go back to bed.
Medication can affect sleep
Most of the disease modifying drugs used to treat MS don’t have a big impact on sleep.
In terms of the medication used to treat MS symptoms (e.g. for pain), lots of these drugs tend to make people a little sleepier and therefore tend to improve rather than worsen sleep. It would be unusual for drugs to worsen sleep, other than steroids which can aggravate insomnia. If you are having a course of steroids it can be useful to take them in the morning, otherwise you might expect difficulty sleeping on the night you’ve taken them.
Drugs like pregabalin and gabapentin do cause sleepiness and that can be a really good thing at night but they can cause daytime sleepiness too. They’re good drugs for anxiety and also for nerve pain so you might sleep better at night if they help to reduce your pain.
Amitriptyline can worsen restless legs a little and it stays in the system a long time. A lot of people feel groggy when they first wake up in the morning and they have dry mouth, but it does help sleep for some. It’s about finding the right dose for you.
Baclofen is useful for spasticity and pain, and can help with deep sleep but can cause daytime sleepiness. You need to work out the balance between not feeling too tired and sleepy and how much it’s doing to improve the spasticity. Sometimes having more of the drug at night so the legs aren’t juddering and shaking on you can help you get a better night’s sleep.
MS fatigue or sleepiness?
While I understand why health professionals use the word fatigue, unfortunately it’s become a really overused word. What people need to remember is: fatigue is a symptom not a diagnosis. That’s really important. The starting point of someone saying “I feel really fatigued” is to stand back and say, okay let’s actually break that down. Do you mean sleepiness? Do you mean a physical fatigue? Is it more of a mental fatigue?
A very simple checklist of lights out time and lights on time, and whether you get through the day without napping usually helps us work out what the cause of the fatigue is and whether it’s related to your MS or is in fact being caused by a sleep disorder.
Dr Kirstie Anderson is a consultant neurologist who has a special interest in sleep medicine. She works in the Regional Sleep Service, Newcastle upon Tyne Hospitals NHS Foundation Trust.
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