Sleep Problems in People with Multiple Sclerosis

People with MS share what keeps them from getting a good night's sleep...

Pills on a night table and senior woman sleeping
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I would love to get a good night’s sleep. Just once. My MS-related fatigue is so terrible some days that I will fall into bed, exhausted and grateful that the day is over. Then I will lay awake and worry that I am not sleeping. The other option is to fall asleep immediately and wake up at 2 a.m., only to feel sleepy again around the time I want to get up. I have found that exercise helps with this cycle, so am resolving to try that again (although it is hard to get enthusiastic about it when I am tired).

I asked people with MS to share stories about their "sleep thieves" and share any tips for getting enough rest:

  • Just diagnosed with multiple sclerosis after an emergency MRI. Instead of restless legs syndrome (RLS), I would have to say I have RAS (Restless Arm Syndrome) because I haven't had it in my legs in years, but the twitchy restless feeling and insomnia I suffer drives me nuts. Glad to hear exercise helps many of you and I will have to get back on track with that.
  • I have been using a product called a Chillow at night. I leave it at the foot of the bed under the covers and when I get too hot, I just lay my feet on it and it cools me down. The Chillow is filled with water and seems to absorb a lot of heat. You can buy on the internet. I also have a couple of other thinner cooling mats that I got at Walgreens. I keep them under my pillow and pull them out when I get hot and lay them under my torso. I rotate them if I wake up and I am still too hot. I have been sleeping much better lately.
  • I've had my first 5 injections of Copaxone and I'm suddenly waking up an hour and a half earlier than usual. I took my first shot in the morning because the nurse came to teach me but then we decided to take them at night and now I wake up early.
  • I've been dx'd for 7 years and from the word go, I had insomnia. I was on temazepam for ages, but a new Dr. freaked out saying it was awful for me so I'm now on: Ambien, trazodone, valium, tizanidine, Flexeril, pain meds and an NSAID to help me sleep (and the muscle relaxants and pain meds through the day) sometimes I can LITERALLY sleep for 2 days straight through the day and night and sometimes I'm up for 4-5 days straight until I hallucinate and start vomiting (I know that sounds crazy, but you have no idea what prolonged sleep dep. does to your body!) nothing really helps consistently. I do have to say, though, for those of you with RLS (restless legs) ...this will sound batpoop crazy, but if you're still flexible enough to do it, get on your hands and knees in bed for a while, stretch your muscles as much as you possibly can until they feel like jelly.. you might, like me, find they're then much calmer! too tired to protest, I guess! Happy sleep, ya'll! 
  • Of late I seem to always have bad dreams involving former work issues (real or imagined) assignments to do, goals not done, etc. Always dark. Caused by MS or Copaxone at night?
  • I have had MS since 1992 and I have yet to find anything that helps, including medications like Ambien. I wake up at least six to seven times per night and when I do sleep any sound or movement in the house wakes me. So far the only thing that works is to live with it and try not to go to sleep while driving or near dangerous places!
  • On the issues you raised about sleep: • I do dream and feel that when I’ve dreamt I’ve had a better sleep. I used to keep a pen and paper next to my bed and write details down. All pretty bizarre. • RSL is a nightmare which gets worse when the weather gets colder or when I need to take more calcium/magnesium supplements. • I get night sweats and have done for many years. I thought I was going through menopause in my mid-30’s. I’m now 47 and living in a warmer climate. I have to sleep with air con in the summer. Then I’m ok and I don’t sweat. • When I have my bladder under control with botox I don’t have to get up for regular loo visits. • After years of insomnia, I do all the sleep hygiene things you mention including wearing socks to bed! Even if I wear nothing else.
  • RLS keeps me from falling asleep and staying asleep. When it starts, I immediately walk to the kitchen, drink 1/3 glass of milk and eat half a graham cracker. Most of the time it works. Otherwise, I take half a 2 mg tablet Valium. That way I have very little hangover.
  • I used to have insomnia pretty bad, but it has been better lately, I think due to me getting more exercise (yoga is the best for me). However, I am a light sleeper and it drives me crazy. I wake up at the slightest sound, such as the sound of my husband's slippers on the carpet. Yes, it is so annoying. I wake up a lot, and thankfully I usually fall back asleep but I would just like to not be so sensitive. My husband had to move to another room because he not only snores but also gets up several times a night (just his regular routine). I even hear the nocturnal animals walking on the ground outside my window (if only my hearing was that good during the day - geez, I have trouble hearing during the day but at night suddenly I have extra-sensitive radar ears). I know it's not as bad as some people, but it gets old night after night after night.
  • I have had MS for 5 years. I have problems with legs jerking, tingling and just plain out uncomfortable. Also waking up all hours of the night barely getting 3 hours at a time. But a friend told me about 'soap" and her leg cramps. I thought she was out of her mind and need psychotherapy and shock treatment! She told me to take an ordinary bar of soap and shred or grate it into small pieces and place between my mattress and fitted sheet. Spread it all over in the lower portion of my bed where my legs are. Well, just to prove to her she is crazy...I did it! And I have to say I haven't had a better nights sleep in years! My legs don't cramp and if they do it is very minimal!!! I don't know how, why or what the soap does...but for $2.00 every 3 months for a bar of soap, 10 minutes of time grating effect it has on my sleep is PRICELESS! Not sure if will help everyone but it couldn't hurt. Good luck to all of you and I wish you the best.
  • I had the worst night sleep ever because I took my Provigil (for energy) too late along with coffee. It was absolutely a miserable night. Today is not too good either!
  • I often get an edgy, jump-out-of-my-skin feeling when I get to bed. I drink very little coffee and never after 2 or 3 pm. (I've cut down on preservatives. additives and artificial sweeteners and think this helps with the jumpy, edginess a bit.) I generally don't sleep through solidly, waking up several times a night. Sometimes I get up from bed and go out on the couch and can sleep there. This may be partially to being alone with no disruptions and also due to a different sleep position. Sounds at night greatly disturb me and cause a startled reaction, which causes my adrenaline to kick in. I reduce this greatly by always wearing earplugs, which do help to keep out jarring noises. I can still hear the alarm and a muffled version of our dogs' alerting barks, so I feel comfortable using the plugs. Although Lunesta helps me sleep, I try not to take it too often because it does contribute to brain fog in the morning.
  • A sleep study was ordered because I was so tired all day. It took 3 studies to find I stopped breathing an average of 120 times an hour, sometimes up to two minutes not breathing. Half of that was due to sleep apnea and the other half to "unknown causes" then my MS doc said that was probably due to the MS. Do we know how many brain cells die when we don't breathe? No wonder I have lacks of cognition. I still am not used to the machine that breathes in and out and for me if I forget to breathe, and has warm moisture swishing through. I have the thrush and am allergic to the mask itself (I found some cotton covers). Say a prayer for me, please.
  • I have spent nearly 17 years researching posture and neurological conditions. Flat bedrest comes out on top for inducing many symptoms. How many people wake up worse after a "good nights sleep?" If you want answers to your sleep related problems and ms symptoms you should google "Andrew K Fletcher" or "inclined bed therapy" to learn how simply tilting your bed could have a profound positive effect on not only your sleep-related problems but a direct positive influence on your MS symptoms and relapses. Who told you sleeping flat was safe?
  • I don't battle to fall asleep,but wake up to use the loo at about 2-3am, then I can't get back to sleep.I toss & turn, then when I eventually get to sleep,the alarm goes off & I'm exhausted.I take 1 amitriptyline every night at 7pm & 2 hrs later I'm out for the count.
  • I have had MS for nearly 30 years (20 years diagnosed). Restless legs - aaarrrrggghhh. Just when you are about to fall asleep there is a slight kick in a leg and you just know that it is going to get worse and you will be walking the floors - again. Or it just starts, sometimes when lying in bed or when asleep; a mad kicking of legs. By accident, I discovered my cure - DENCORUB! Don't know if it's called the same thing OS. Smells so that my cat goes running out the door. But it works! Slather it on, feels great and no more restless legs immediately. Your partner might hate the smell and that could be a problem but being single it is a godsend.
  • I'm tired of waking up at 2 or 3am every night. seems that this occurs more frequently since my last relapse...why? I just want some deep sleep. When I do wake up, I visualize myself doing things that need to get done only to be fatigued when I actually get up!
  • I have mild-moderate sleep apnea. C-PAP did not help the first time. So I am going to try a different form of oxygen at night. Sleep is also interrupted by nocturia, hot flashes, and severe headache from instability in my neck. PT for the neck helped and am working on that but often have to sleep sitting in a chair. The hot flashes persist since I developed breast cancer and must discontinue the hormones. Nocturia is reduced by intermittent catheterization just prior to bed. I have found that Melatonin helps a bit. I must change my bedtime habits, too.
  • I've been taking Ambien CR for several years, actually. Doctor says that's fine.
  • I have REM Sleep Behavior Disorder. My neuro. usually sees this in men with Parkinson's. I have violent nightmares that leave me exhausted and panicked. I swear and shout and don't wake up. My husband found this entertaining until the night I doubled up my legs and kicked him hard. My neuro has me on clonazepam. He says it helps but doctors don't know why. He just increased the dose and I'm getting a good night's sleep for the first time in years. I never had this prior to my MS diagnosis 13 years ago. We don't think it's a side effect of any of my meds.
  • I take Mirapex 3 x/day for restless leg and always do my weekly injection in the morning. The side effects are bad enough in the morning; if I do them at night, I get no sleep at all.
  • I worked the night shift for years and I sleep best during the day. Premenstrual I will be awake for about 48 hours straight unless I drug myself and that doesn't always do it. I just use the energy and sleep when I am sleepy. It makes daytime appointments hell, though. I tend to rotate forwards by a little bit every day so sometimes I sleep days, sometimes at night.
  • My biggest problem is waking up in the middle of the night and not being able to go back to sleep. If I let my thoughts just go, I'll start thinking about stressful things that I have to do or forgot to do. Instead, I make lists of items - all animals that start with the letter "N" (there are not any, besides "nightingale," that I have come up with), all the spices on my shelves, all of the 50 states. It keeps my brain occupied, but in a calm way, and I guess my body decides that it is better to go to sleep than be this bored.

Bottom line: It doesn't seem fair that people with MS, who are often fatigued during the day, should have to contend with insomnia, but we do. Try some of the tips above or other approaches to improving "sleep hygiene" and see if you can gain even an hour or two of sleep. Every little bit counts.