Are you sleep-deprived?
The majority of people with MS have a sleep disorder and are sleep deprived. In this Newsletter Prof G gives some simple advice to improve your sleep.
I am aware that fatigue is one of the most disabling symptoms to affect people with MS (pwMS). Most neurologists' hearts sink when they hear their patients ask ‘is there anything you can do for my fatigue?’. The problem is that MS-related fatigue is complex and has many facets that need to be addressed in a systematic way. I covered this in a recent Newsletter on ‘Why am I so fatigued?’.
One issue I didn’t go into in much detail in the fatigue Newsletter was how to improve your sleep. Sleep is the most important performance-enhancing agent we know so you have to find a way to optimise your sleep. We know poor sleep is the elephant in the room. Most studies on sleep in MS show that over 70% of pwMS have a sleep disorder of some kind.
The following figure summarises the results from a survey I did many years ago of The-MS-Blog readers. I doubt much has changed.
I am sure you all know what it feels like if you wake in the morning and you have had a good night’s sleep; you feel energised, your mood is better and you are prepared to take on the world. In contrast, when you wake from a night of tossing and turning, restless legs, limb jerks, pain, getting up to go to the toilet several times, waking early to ruminate about what your future will be like because of MS, with a hangover from too much alcohol the night before, etc. you find it challenging to get through the day. A poor night’s sleep leaves you irritable, with a low mood and poor concentration and the urge to nod off. Sleep deprivation comes with other risks as well; it increases your chances of having accidents, both road traffic and occupational accidents, and it reduces your brain health.
Several studies show that approximately 40% of pwMS have obstructive sleep apnoea and that it is not necessarily associated with obesity and a large neck. I suspect sleep apnoea in MS is due to brain stem pathology affecting pharyngeal (throat) muscle function. Yes, I think MS causes sleep apnea. Are you a snorer and do you have periods when you stop breathing? Ask your sleep partner and if you don’t have a sleep partner you should download one of the many smartphone sleep apps that can assess whether or not you snore and have periods of apnoea.
Another clue to sleep apnea is excessive daytime sleepiness. Do you nod off frequently during the day? You can assess this by completing the so-called Epworth Sleepiness Scale online. Since knowing about MS and sleep apnea I have diagnosed it in many of my patients with MS, including patients with a normal BMI. When they come back to the clinic after having their sleep apnoea treated often their fatigue has resolved or at least improved.
Clearly, if you have nocturia from MS-related bladder dysfunction, pain, restless legs, spasticity with limb jerks, depression and anxiety with insomnia or early morning waking these are problems that need to be diagnosed and treated. So there is a lot that can be done by your MS team and HCPs to make sure you are ‘sleep ready’ from a neurological and psychiatric perspective. However, there are also things you can do yourself to improve your sleep.
The following is a simple self-help guide to improve your sleep hygiene:
1. Make sure you spend an appropriate amount of time asleep in bed; a minimum of 6 hours. Some people need more than this to feel refreshed.
2. Limit daytime naps to 30 minutes. Please note that napping does not make up for inadequate nighttime sleep.
3. Avoiding stimulants such as caffeine, modafinil and nicotine close to bedtime.
4. Only drink alcohol in moderation. Alcohol is well-known to help you fall asleep faster, but too much disrupts sleep.
5. Exercise helps improve sleep quality. As little as 10 minutes of aerobic exercise per day can improve sleep quality.
6. Don’t eat before going to bed. Heavy foods and fizzy drinks can trigger indigestion or heartburn/reflux that disrupts sleep.
7. Ensure you get adequate exposure to natural light; exposure to sunlight during the day, as well as darkness at night, helps to maintain a normal sleep-wake cycle.
8. Establish a regular relaxing bedtime routine, which helps the body to recognise that it is bedtime. This could include taking a shower or bath or reading. However, avoid reading or watching emotionally upsetting content before attempting to sleep.
9. Making sure that your sleep environment is pleasant. Your mattress and pillows should be comfortable. The bedroom should be cool for optimal sleep (16-20°C). The bright light from lamps, smartphones and television screens can make it difficult to fall asleep, so turn those lights off or adjust them when possible. Use the blue filter mode on your smartphone and other devices that reduces the inhibition of melatonin from light. Consider using blackout curtains, eyeshades, earplugs, white noise machines and other devices that can make the bedroom more relaxing.
10. Finally if you have pain, nocturia, restless legs, spasticity with limb jerks, sleep apnoea, depression, anxiety, etc. get these adequately managed via your HCP.
Please let me know what strategies work for you to improve your sleep. An important role of MS-Selfie is to share best practices and alternative practices as well. I like it when pwMS hack their own physiology to come up with solutions that work.
Don’t forget the aim of MS treatment is to maximise your brain health and part of this philosophy is the holistic management of MS including your sleep.
Subscriptions
I am hoping to raise funds from subscriptions to administer the MS-Selfie Newsletter and microsite. Funds will be used to hire a part-time medical writer and proofreader and an administrator to manage the workflow and to curate and transfer the contents of the Newsletter onto the companion MS-Selfie microsite. So if you find these Newsletters helpful and can afford to subscribe I would urge you to do so; it will help me. Many of the improvements you have suggested and want for MS-Selfie need time. I simply don’t have the time to do all the work myself. Thank you.
General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust. The advice is intended as generic advice and should not be interpreted as being personal clinical advice. If you have problems please tell your own healthcare professional who will be able to help you.
Hi All
I had many years of terrible sleep. I eventually tried only allowing myself the amount of sleep that i used to have before MS. In my case 6/7 hours per night. i use an alarm in the morning, without i will sleep far too long and feel awful all day. I stopped napping in the day, I found that the chronic fatigue that was dragging me down was only made worse by napping. If I feel totally unable to avoid a nap these days I set my phone arm for 15 mins. Ive found not watching too much TV, and finding some kind of activity in the evening that's vaguely constructive and purposeful helps to get me tired in a better way. The sleep rationing and cutting out most naps is hard work, but for me it lifts me out of the lethargy that i used to feel. Its almost as if the chronic fatigue is something that can't be cured with more sleep, I found it only made things worse.
Just my experience but thought I would share.
RV
I try and go to sleep at the same time every night and wake up at the same every morning regardless of weekdays or weekends. This made a massive difference for me. It can be difficult socially when everyone else stays up late on a Saturday night but it works.