In last week’s BMJ there was a short piece on ‘How to write your own wellbeing prescription’ and the top piece of advice was 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 summaries the results from a survey we did many years ago of our blog readers. I doubt much has changed.
You know what it is 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, legs jerking, getting-up to go to the toilet several times, with a hangover from too much alcohol the night before, etc. you find it challenging to get through the day; you are irritable and your mood is low.
The study below in people with MS shows that restless legs syndrome, which is commoner in pwMS, not only affects sleep quality but is associated with poor cognition. So if you have RLS bring it to the attention of your HCP so that you can get it treated.
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. And if you have pain, nocturia, restless legs, sleep apnoea, etc. get these adequately managed via your HCP.
Please let us know what strategies work for you to improve your sleep. An important role of this blog is to share best practice and alternative practices as well. We like it when our patients hack their own physiology to come up with solutions that work. Don’t forget our treatment aim is to maximise your brain health and part of this philosophy is the holistic management of MS including sleep.
Cederberg et al. Restless Legs Syndrome, Sleep Quality, and Perceived Cognitive Impairment in Adults With Multiple Sclerosis. Mult Scler Relat Disord. 2020 May 18;43:102176. doi: 10.1016/j.msard.2020.102176.
Background: Restless Legs Syndrome (RLS) is a prominent sleep disorder that often worsens sleep quality and perhaps cognitive function in adults with multiple sclerosis (MS). The present study examined the relationships among RLS prevalence and severity, sleep quality, and perceived cognitive impairment in adults with MS.
Methods: Participants (N=275) completed the Cambridge-Hopkins Restless Legs Syndrome Questionnaire, the International Restless Legs Syndrome Study Group (IRLS) Scale, the Multiple Sclerosis Neuropsychological Screening Questionnaire (MSNQ), the Pittsburgh Sleep Quality Index (PSQI), the Patient Determined Disease Steps (PDDS), and a demographic and clinical characteristics questionnaire.
Results: Persons with MS who had RLS (i.e., MS+RLS; n=74) reported significantly worse perceived cognitive impairment compared with those who did not have RLS (n=201; p=0.015). Bivariate correlation analyses within the MS+RLS group indicated that greater RLS severity was significantly associated with more severe perceived cognitive impairment (r=0.274) and sleep quality (r=0.380), and worse perceived cognitive impairment was significantly associated with worse sleep quality (r=0.438). Linear, step-wise regression analyses indicated that RLS severity significantly predicted perceived cognitive impairment (β=0.274), but the inclusion of sleep quality (β=0.391) accounted for the relationship between RLS severity and perceived cognitive impairment (β=0.126).
Conclusions: Our results suggest that sleep impairment may be an intermediary factor in the association between RLS severity and cognitive impairment in persons with MS who present with RLS. The diagnosis and treatment of RLS symptoms and other effectors of sleep quality could improve neuropsychological consequences of MS.
CoI: multiple
This works for me (may not suit everyone). 57 year old male, DX 18 years ago, IRT 15 years ago (no treatment since 2nd infusion 14 years ago). Neuro stays my MS is “inactive”.
Walk (slowish) the dog every morning about 6.30am
2 x 25 cycle rides a day (one morning and one early evening)
Pottering around type jobs through day – gardening etc
low carb diet
30 min sitting in the sun (when sun is out)
Most important:
– never drink anything after 8.30pm
– don’t watch things (in my case the news) which gets you het up
– go to bed around 10.30pm
– never read in bed
– try not to have any chat with other half in bed
– dark room
– one ibuprofen before bed (to address any aches / pains)
My wife comes to bed 5 mins after me and I am always asleep. I have 7 hours sleep which is usually 3 hours deep sleep and 4 hours light sleep (according to my fitness watch).
Sleep is increasingly a problem for me, as I wake up with numb hands and arms, then with leg pain around 5am, most days. Pregabalin helps but I’ve reduced my dose because of weight gain. I have recently upped my exercise regime with 2 mile walks every other day and 30 minute sessions on the exercise bike most days. For context, I’m 1 year post- round 2 Lemtrada, but the leg symptoms have developed since round 2 (though NEDA). I do read in bed but usually no screens. I have adapted to less sleep but I’m exhausted by 7pm, especially if I’ve used my arms (gardening and painting lockdown jobs taking their toll!)
Could your numb hands and arms when waking up from sleep, due to your sleeping position? As in an issue of circulation.
From Web MD ‘The most common reason for getting a numb hand or arm is sitting or sleeping in the same position for a long time. That can put pressure on your nerves and cut off blood flow, which brings on short-term numbness.’
Anonymous, perhaps a factor, but I never sleep deeply for long periods. I have alot of nerve damage in my arms as a result of a large relapse and an impressive cervical spine lesion.
I get this too. My hand & arm goes numb in my sleep a lot (the same side that went numb in a relapse from c-spine lesion) – never had it before I had that relapse. It’s weird. Happens even when I’m sleeping on my back. The feeling always comes back to life though :/ but I wonder why this happens?
Nice
The above tips and routines generally work for me, but they did nothing in the first weeks of lockdown, where anxiety was at a level outside my control. I woke up in the middle of the night, every night, with a churning stomach and feelings of dread. I dealt with it firstly by giving in to it – getting up, watching a film, cups of tea then going back to bed at dawn. But then discovered the answer – by cutting exposure to news coverage to ten minutes a day, sleep patterns gradually normalised. And as I’ve got better at filling the day with immersive activities, life has become surprisingly fulfilling. Keeping myself in ignorance of the world around goes totally against everything I believe in, but here and now it feels right. I am in control of my own environment and that will have to do.
Hi,
Anyone to answer to my former questions?
I find your topics have been discussed 20-40 years ago. (Sigh!)
Bye …
You havent mentioned Sleep apnoea which research show is over represented in PwMS and relatively common in PwMS regardless of body mass and other risk factors for this disorder…in other words it seems likely that it is “caused” by MS
Yep, you right but it is difficult to self-diagnose or self-manage. The sleep apps are very poor at diagnosing it.
I have Sleep apnoea which was diagnosed last year. I have had it since childhood according to my mother who says I have always had ‘pauses’ in my breathing and was initially due to enlarged tonsils and adenoids (removed). I must admit I do have a Raised BMI. The problem identifying it as an adult was that I don’t have the usual tell tale sign of Snoring, I don’t snore, I sound like I’m choking. Put my ‘daytime sleepiness’ entirely down to MS. It was only after strange episodes during the day that I was aware there was a problem. A feeling of exhaustion would be followed by suddenly realising that I had stopped breathing. I would need take a forced, exaggerated breath in to restart (hoping nobody saw it at lunchtime at work!)
Now I am using CPAP this no longer occurs. I can differentiate between ‘daytime sleepiness’ caused by MS fatigue and apnoea events.
I was referred to the sleep clinic by a neuro who recommended I was given a CPAP. I find myself stopping breathing during waking hours and during sleep. I did an overnight sleep test at home with a gadget from the hospital. Unfortunately I had a cold virus at the time and had a wakeful night sitting upright. The test was negative for sleep apnoea but I don’t think it was a good assessment as I was propped up. I made a note of that on the form that went back to the hospital with the gadget but I don’t know if it was considered.
My problem has been lack of discipline, too much pottering in the evening etc. Now my golden rule is to pay attention to my circadian rhythm. In bed by 11pm, and I wake naturally ~0630. Everything is so much better – my mood, my energy, my tremor… Am expecting the benefits to snowball too. Sometimes the dullest, most obvious, simple things make the biggest difference.
Is melatonin suitable for PWMS to help with sleep problems?
It does not do much of anything for me (more vivid dreams perhaps) but that’s fairly common for most people from all I gather. Then again a few people swear on it.
I never found any reports of confirmed bad downsides either (lots of MDs dislike it but evidence appears really scant either way) so maybe it is one of these things to try.
I walk my dog twice a day, 10 mins late morning, 20 mins 9pm! Struggle to stop myself falling asleep watching TV during the evening after meal! Although I make myself go to bed by 10.45 I struggle to get to sleep until after midnight. Can be woken by pain and numbness around 4am. Usually wake about 8am feeling unfreshed. The best thing I use is a noise-maker app which helps relax me and blocks out other noisss which would wake me.
25 years since do, now SPMS. 2 mg of a benzo and gabapentin before bed helps to relax spastic legs. Still it is difficult to find a comfortable position which is essential for quality sleep. A good night would be one trip to the bathroom.
Sleep hygiene routines are good BUT they don’t make a substantive difference to those of us with severe RLS. What would help is more research in the UK & more education of neurologists and GPs. It’s unacceptable that most are still unaware of Augmentation and DAWS and still prescribing dopamine agonists as first line treatment. Methadone and Buprenorphine at low dose are not available in the UK despite research evidence from the USA showing they are safe (& cheap) if prescribed at low dose for refractory severe RLS. RLS is worse at night as dopamine levels naturally drop. No amount of sleep hygiene will help unless the RLS is treated effectively. Let’s educate the GPs and neurologists first. RLS is the most common neurological disease in the world and has the greatest economic impact. It also has the highest suicide risk of all neurological disorders. ( I haven’t included the research links but can if required).
More research please! I have to take medical textbooks on RLS ( ‘Clinical Management of RLS by Drs Buchfuhrer, Allen, Lee & Hening) with me to all doctors’ appointments. The RLS UK help forum is full of appalling stories of medical negligence & mistreatment. Doctors and neurologists telling RLS sufferers that their condition is psychological, GPs prescribing 20 times the maximum dose of dopamine agonists and then refusing to help suicidal patients experiencing traumatic augmentation and DAWS.
If I sound angry about this it’s because I am. I’m so sick of the ignorance and lack of research on RLS & inadequate treatment of RLS in the UK.
No amount of sleep hygiene will help inadequately treated RLS. That requires more education of neurologists and GPs in the UK. RLS has the greatest economic impact of all neurological diseases and the highest suicide risk, yet there is currently no research being carried out in the UK on causes or treatment.
The RLS UK help forum has cases of medical negligence on a daily basis and the stories are harrowing. Sufferers getting no more than 2 hour’s sleep because their neurologists have increased their dose of dopamine agonists to 10 or 20 times the maximum and when the patients complain of all over body twitching and lack of sleep, their GPs say it is psychological . No- it is severe augmentation brought about by medical ignorance and negligence.
The top RLS experts are in the USA and they no longer prescribe dopamine agonists as first line treatment.
Most GPs are unaware that anti depressants and anti histamines cause RLS. They are also unaware that 50% of cases can be resolved by Injectafer iron infusion.
Educate the UK medical profession first, then treat RLS adequately, then our sleep quality might improve.
If I sound angry it’s because I am.
What afect your sleep?
Cell phone
🙁
Thank you Prof G for hilighting the sleep apnoea possibility regarding MS fatigue. For about 5 years I’ve had episodes of night choking. It waxes and wanes. Then I started waking in the night with headaches, this is nightly now. Getting desperate, I started researching and reading on what may cause this. As my father was a terrible snorer and would stop breathing I decided to investigate, he has mixed dementia and I think there may be a possible link. So after reading your info on MS and sleep apnoea I asked for a referral to the sleep clinic. Results are mild on the chart but as I have the waking headaches and never wake refreshed they are going to offer me treatment. Hallelujah I might get a good night sleep. I’m not overweight, never have been and exercise as best as I can. My MS is old, probably SPMS but who knows. Anyway thanks again you may well be helping me to get a good night sleep and reduce my dementia risk. 🤞😁