Sleep Problems and Tips from People with MS

Take a look at how other people with MS deal with their sleep problems.

Pills on a night table and senior woman sleeping
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I have always been curious about sleep patterns of other people with MS, since I have such a hard time figuring out my sleep problems. I think that, given what our usual daytime complaints and malfunctions are, many of us forget to mention problems with our sleep to our neurologists, who may not be equipped to do much to help us, anyway.

Some nights I sleep great, going to sleep right away and sleeping all the way through until morning.

Then I get out of bed and feel groggy and wish I still had a couple more hours before the start of my day.

Other days I am so tired that I dream about my bed. When I make my bed, I long to climb in it. I swear I find myself daydreaming about my bed on days like this. Then nighttime comes, I get in the bed and can't fall asleep until it is almost morning.

Then there are the nights that I jump in bed and fall asleep, just to wake up to see the clock inevitably read 2:32 am. These are probably the most common for me.

Some nights I can pinpoint the problem. I might have an injection site that is itchy or painful that keeps me awake. I can be disturbed by hot feet or really cold feet. Other nights, I need to get out of bed several times with nocturia (nighttime urination) that is so common in people with MS. Other nights I just have normal non-MS thoughts and worries, like 97% of the population, MS or not.

"One of my usual wake times is 3:03! Laying there wide awake. So I pray. I fall back to sleep praying. Not a bad sleeping pill and it helps get my mindset right for the next day!"

"I don’t sleep well, and it’s probably my biggest complaint, so I should be grateful. I have a hard time going to sleep. I was on Ambien for three years, but got myself off that about 10 months ago. After a white, it doesn’t really work anyway, and I don’t like taking pills. I exercise a lot, not in the evening, to try to wear myself out, and it may help. I don’t wake up in the night, but I have a hard time going to sleep; sometimes it’s 1 or 2 or later. The quality of my sleep isn’t good, I think. Five or six hours of sleep a night? I wake up early stiff, painful, esp. in my extremities. I feel tired nearly all of the time. I feel like I’ve slept moderately well about once a quarter."

"For years I’ve had sleep issues exactly as you’ve described. This last year I could not fall asleep till around 2 a.m. and did everything right like no TV in our room, etc. I also wake at around 3 and can’t return to sleep. I researched and talked to my GP and I take a Melatonin capsule before bed and usually get to sleep and often still waken in the night to use the bathroom (1-4 times), have the hot feet and calves and sometimes spasm aches and take another Baclofen."

"Like everyone else I had sleep issues for years. I’d go to sleep for about 2 hours, and then I was awake and asleep alternately for the remainder of the night. I woke up frequently to run (OK, stagger) to the bathroom. I finally was tested for sleep apnea. Yes, I had a breathing problem at night! I don’t know how much of this problem relates to MS (I do occasionally get the “hug”), but my sleep is much better now."

"Sometimes a glass of warm milk with a teaspoon of sugar works."

"I had a lot of trouble sleeping, and then I tried with different techniques for falling asleep. I found that focusing in the breath for a falling asleep routine really calms my mind, and leaves the body in some relaxed CNS mode. This is very similar to samatha meditation in the buddhist world, but letting your mind to fall asleep instead of preserving deep focus. I found that my sleeping patterns are much better also if I have some excercise during the day, having a strict sleeping schedule for long period of time, and having a light meal at dinner."

"I take Trazadone so help me stay asleep. Lavender on my pillow and empty my bladder before bed. Trazadone doesn't help me go to sleep which I don't have a problem with but helps me get at least 6 hours straight without waking up."

"I have my best sleeping hours during the day time. I get sleepy around 5 am and since I don’t work any more I just sack out. I just sleep when I am sleepy and am glad that I adore the quiet peacefulness of the night. We have good floodlights outside. Sometimes I garden then at 2 am or clean house. I use the awake time productively anyway and don’t worry about sleep schedules in general. I love having alone time and quiet. I used to take my big dog out for 2 am walks sometimes."

"I was diagnosed about 8 years ago but doc thinks I had a milder form of MS for 30 years before that. I used to be an early riser and felt that that was my “normal” cycle, but for the last couple of years my internal clock seems to have changed. i can’t go to sleep before 1 or 2 and then I have a terrible time getting up in the morning. I’m retired and don’t have to be anywhere but I hate not waking up until 10 or 11 in the morning. It feels like my whole day is wasted. I’m trying to change this, but it seems that willpower is not enough. I’ve had problems with fatigue for years. I’m now taking 30 mg of Vyvanse, which I think helps with the fatigue a little bit, but I still can’t seem to change the pattern. Recently I’ve had a couple of nights when I didn’t sleep at all. The next night I went to sleep on the couch at 7 pm got up at 10 and went to bed, but I still couldn’t get up in the morning!"

"My nurse practitioner found out about and now prescribes a compounded topical pain medication. It is expensive–but I use a very small amount to take care of bothersome nighttime events–pain in my legs, cold feet, neuropathy. She got the formula from a neurologist who was treating her for pain in her neck."

"I can’t sleep because my feet feel cold, so I put on slipper socks and an extra blanket and that seems to help."

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