Listen now (15 mins) | One thing that still haunts me is the chronic insomnia I experienced due to the pain and discomfort of not being able to roll over in bed.
Some more lived experience for you here... there is something worse than a bad sleep (for me, at least). When you wake up feeling well rested, and you get yourself full of hope for one of those rare good days. But then you crash into a wall of leg-crumbling fatigue 30 minutes later and you know your day is already finished. This is hard to cope with, mentally. Especially over a timescale of years. Sometimes I prefer waking up tired and knowing it's just going to be a normal day and I have to carefully manage my efforts.
Great sleep flows from peace of mind. Someone with a chronic progressive neurological disease is unlikely to have peace of mind (anxiety about employment, relationships, future disability…) so regular good sleep is unlikely. Healthy living (exercise, outdoor activities), where possible, can help. Treatments to address smouldering MS / worsening disability will relieve much of this anxiety and dramatically improve sleep.
I’ve tried everything and I wonder if, in addition to pain, spasms and urinary urgency issues, there might not be a circadian aspect. I’ve been a night owl my entire life. My energy ramps up as the day progresses and I’m chipper at 8 PM. So I sometimes flip the day and get things done at night and sleep during the day. I dread the feeling when I know nothing is going to work for sleep. I’ll wake after 2 hours and that’s it. I’m awake! Whatever meds I’ve taken have made me groggy. So I listen to a tape and I may eventually fall back to sleep at around 5 AM. This does not make for a productive day. I use no coffee, stimulants or alcohol btw. I can sleep a full night with THC, but my cerebellum hates it. I can’t move and I’m hungover. I wish CBD worked, but maybe the doses are too low. ? Oh to get regular sleep!
I struggle with insomnia and have tried different techniques over the years without much success for me: I have still not figured out deep meditation (or any form of meditation really) nor information dumping exercises to clear my mind.
But one thing that works is being exhausted from physical activity if one is able to do that. A demanding effort ideally earlier in the day and not before bed time. I do it in a fasted state as well...
I have just recently started taking good quality full spectrum CBD Gummies (3000mg) at night. My quality of sleep seems to be much better. It is hard to describe in words but my sleep has definitely improved. A decent quality CBD product can be expensive but it is possible to find deals. You can buy oil but I personally disliked the taste. My husband has a spinal injury and he has found them to be helpful too - he says he sleeps ‘differently’ Less dreaming too.
I always listen to an audio book and fall asleep within 15 minutes. However I wake up quite a few times due to leg spasms every time I roll over and needing the toilet. Fortunately I fall asleep again immediately every time. By 5am though I get a few cramps etc..I get up move a bit and ho back to sleep. However, if I have a cannabis cookie just before bed , my sleep is deep and undisturbed for at least 5 hours . If I have to get up to go to the toilet. I have no pain despite some stiffness....I'm on Sativex but while it helps hugely wiyh nerve pain during the day, it does not make me drowsy. After talking to a beuro rehabilitation doctor who was involved with the developmentofSativex, I am going to investigate a private medical cannabis prescription. I wish it was available on nhs.
Brilliant list to help improve sleep. Once I started taking baclofen before bed my restless legs settled down and I slept much better!
I have a bedtime alarm on my watch that helps me at least start heading to bed. It's useful when I'm watching something engrossing or working on a project where I might otherwise really lose track of time.
Well, if you’ve got kidney cysts (not inherited), they say to drink plenty of water. If you have MS you may also have over-active bladder. If you had enlarged prostrate, you may have taken med to shrink it, but you may still have the prostrate pressing on your bladder (distended). With all this and especially the MS, you may have a bladder that does not empty all they way, so they may ask you to think about intermittent catherization (that’s all I did was think about it). And one must stay hydrated, you know. And whenever my leg starts spasming at night, concurrently my bladder is activated to empty. I get 2-3 hours sleep off the bat, with nothing. I get up and pee and maybe I can get back to sleep, but 20 mg baclofen will get me an extra 2 hrs. Clonazepam worked great for me early on 30 years ago with neck and hand tremor, and it works really well now to put the whole mess at rest (“de-amplify" the symptoms) for a bit, .5 mg or ½ that tab. But I only do that when I’m counting on a better night’s sleep for what I have to do the next day. I can come back later and often pick up an hour nap, but they say that’s not good. And naps do decrease the sleep at night. More exercise during the day? Not that easy with a leg that remembers later on (via pain or spasms or spasticity or clonus) every move you make, due to mechanical issues brought on, in part, from MS spasticity. I might see if Brian Guppy’s (above) Ambien might be helpful on "as needed basis". I’d like to drink more water but am afraid that only means more wake ups at night. At least I’m still aware enough to be woken out of my sleep with an urge to hit the toilet.. Versus numb or something from the waist down and having to rely on a diaper, which if I could sleep through the process well anyway, might not be a bad thing. This is not the complete, well written version.
Insomnia was one of the first prodromal MS symptoms for me. After 35 years of reliably falling deeply asleep for 8 hours within 10 minutes of my head hitting the pillow, I suddenly started waking up nearly every night in the middle of the night and then just lying there awake for 3 or 4 hours.
For me, this is not secondary to any pain, anxiety, spasms, etc. - it seems to be a direct consequence of something MS is doing in my brain.
I spent a decade trying blue light filters, avoiding caffeine / alcohol / food / exercise / screen time after certain hours, blackout curtains, meditation, turning down the thermostat, melatonin, magnesium, benadryl, restricted sleep schedules, etc., etc., etc. It all did absolutely nothing whatsoever for my insomnia.
I might take some flak for saying this, but the only thing that has ever helped me is Ambien. If I've been awake for a while and it's clear that I'm not going back to sleep anytime soon, I take half a pill and I'm out within 20 minutes. As long as I only take half a pill, I don't feel groggy or drugged at all when I wake up. I can take it as late as 2 hours before my alarm and still have no trouble getting up.
It helps me even on the nights I don't take it, which I'd guess is about half the time. This is because knowing with absolute certainty that I'm not going to spend hours lying awake tonight actually helps me get to sleep.
Sleeping pills should be seen as a last resort, but if you've tried everything else, don't be afraid to give them a shot. As long as you don't abuse them, they probably are not going to hurt you. I wish I had done it a lot sooner.
I recently completed a short CBTi (cognitive behaviour therapy for insomnia) course, through my local NHS talking therapies service. It was hugely helpful, and has had a really substantial impact on my quality of sleep.
If anxiety or depression make up any part of your day to day experience and you struggle with poor sleep, it’s possible that a similar program might be helpful.
In my area, the talking therapies are self-referred, but I expect that’s not universal.
I am currently in spasticity pain/night waking/day sleeping nightmare. Working way through amitryptaline/gabapentine/baclofen/Sativex/ nothing working. On diazepam to get me through this weekend til can speak to MS nurse. Appointment with neuro physio 19 dec (4 week wait) had pain for 4 months now. Trying to move/stretch.
Brilliant list Prof G, thank you. My teen (without MS), has struggled for many years with sleep issues due to adhd/autism anxiety, we tried absolutely everything with sleep hygiene and mindfulness and it had no real impact for him. However, a Melatonin script has been absolutely amazing for him (obvs continue with the sleep hygiene too!). Another friend (Canadian without MS) uses Cannabis for anxiety and sleep and no longer has any desire to drink any alcohol, as so effective for her mood and sleep. So just popping these here in case this is useful to others.
I developed RLS probably 10 years before my MS diagnosis. I use magnesium lotion called Restful Legs from my low back to my feet after I shower before going to bed, and it works wonders. I also have a supplement called Calm Legs that I use as well. It has magnesium and valerian to promote sleep. I shower before bed, try to avoid liquids for 2 hours prior to bed, have ear plugs and a sleep mask if the moon's too bright. I use CBD and THC gummies occasionally(I live where it's legal).
Thank you for sharing your experiences. I take daily magnesium which helps with migraine but also with sleep.
A small thing that has helped me but may not be relevant to others. I have swapped to an all wool bed, which helps with temperature control, and so aids sleep. I have a wool duvet, pillows, mattress protector and finally a wool mattress. These all have pure cotton protectors/outer coverings. So many pillows/duvets/mattresses etc... are synthetic material and don't allow the body to breathe. My MS along with menopause has led to poor temperature control and by swapping to natural materials my body appears to be able to adjust to temperature changes more easily, so getting a better sleep. Wool is warm in the winter and cool in the summer for bed coverings. My friends have silk duvets, which I personally find too heavy, however work for them. I really think that natural materials that breathe with you really help sleep if temperature control is an issue with your MS and/or menopause ( if that applies to you). the down side is they are not cheap