Written by David Rintell, EdD,
Psychologist, Partners MS Center and Partners
Pediatric MS Center, Boston, Massachusetts
Sleep and MS
There is nothing like a good night’s sleep to restore oneself physically, mentally, and emotionally. Unfortunately, more than half of people with MS experience difficulty sleeping. Inadequate sleep leads to fatigue, the most common and one of the most debilitating symptoms of MS. It also causes daytime drowsiness, lack of mental clarity, and a reduced ability to use one’s resources to solve problems. Many possible causes of sleep problems for people with MS can be identified, including: bladder problems, depression, spasticity and frequent leg movements, difficulty changing position in bed, and poor sleep hygiene.
Causes of Sleep Problems in MS
Frequent Nighttime Urination
The need to urinate during the night, referred to as nocturia, is likely the most common culprit in sleep interruption for people with MS. Bladder problems are common in MS, and many people need to use the bathroom multiple times each night. Most people are able to regain sleep after getting up once, but it becomes increasingly difficult to sleep soundly when sleep is interrupted many times per night due to the need to urinate.
Fortunately, a number of solutions are available for urinary frequency in MS. Consulting with a urologist (a physician who specializes in urinary difficulties) is an important first step. If you are having nocturia and/or the frequent or urgent need to urinate during the day, ask your neurologist to refer you to a urologist experienced with patients who have MS, and who has experience treating the symptoms of a neurogenic bladder.
Strategies to Help: Some people with the frequent and urgent need to urinate restrict their liquid intake, but this is not a healthy practice and can lead to other problems. Drink normally during the day, but have your last drink about three hours before going to bed. Drinks with caffeine stimulate the bladder, so reduce your caffeine intake, or drink caffeinated beverages only in the morning. Alcoholic beverages often cause nighttime urination, so do not drink alcoholic beverages late at night. You will find more information on caffeine and alcohol to follow.
Certain medications may help. Detrol® (tolterodine), Ditropan® (oxybutynin), Enablex® (darifenacin), Flomax® (tamsulosin), and Botox® (botulinum toxin) injections for certain bladder problems. DDAVP® (desmopressin) is a drug that is typically administered as a nasal spray, although an oral formulation is also available.
Depression interferes with one’s ability to sleep. One of the main symptoms of depression is poor sleep. “Early morning awakening” is a common sleep problem in people who are depressed. People with this problem are able to fall asleep, but they wake up in the early morning hours and are unable to get back to sleep. Knowing the other symptoms of depression can help you to determine if depression is interfering with your sleep. Common signs of depression include:
- Feeling low or down
- Poor appetite or overeating
- Low energy
- Low self-esteem
- Difficulty with attention and concentration
- Feeling hopeless
Strategies to Help: The best treatment for depression in MS is the combination of counseling and medication. If you think
you might be depressed, speak with your neurologist or primary-care doctor, or seek treatment from a mental-health provider. Exercise also helps depression, but is not a replacement for professional help.
Common medications for depression in people with MS include the SSRIs (selective serotonin reuptake inhibitors), including Prozac® (fluoxetine), Zoloft® (sertraline), Paxil® (paroxetine), Celexa® (citalopram), and Lexapro® (escitalopram). An NDRI antidepressant (norepinephrine–dopamine reuptake inhibitor), Wellbutrin® (bupropion), is also commonly used to treat depression in MS.
Spasticity is a common symptom of MS, which is characterized by muscles becoming tight and sometimes even rigid. Spasticity can be very uncomfortable or even painful, and limb movements may be associated with spasticity as well. Pain from spasticity can interfere with sleep.
Strategies to Help: Medications for spasticity include baclofen (formerly available as Lioresal®), Flexeril® (cyclobenzaprine), Zanaflex® (tizanidine), and Botox® injections for severe spasticity. Exercise and stretching can help to reduce spasticity, and a consultation with a physical therapist is recommended. If you or your partner notice that you are having a lot of limb movements and/or discomfort at night, consult your neurologist.
The human body was not designed to sleep in one position all night. Our skin and tissue experience a great deal of pressure from the weight of our bodies when we are asleep. We therefore must move and change position multiple times during the night. When we change position, we wake up briefly, but if we are good sleepers we fall right back to sleep and don’t even remember waking up. Some people with mobility problems due to MS have more difficulty moving around in bed at night. The pain and discomfort coming from the skin and tissues that are making contact with the bed can keep a person awake.
Strategies to Help: If turning in bed is difficult, install rails on one side of your bed, so you can use your arms to change position. Sometimes partners arrange to turn the partner who has MS during the night. You should take care not to cause your partner to lose too much sleep with the task of turning you in bed. Speaking to your neurologist or physical therapist about this problem can be very useful.
We mostly think of habits when in the context of “bad habits,” such as smoking or chewing our nails. But habits can be either bad or good habits, and good habits can help us sleep. The term “Sleep Hygiene” relates to our habits in the bedroom, in bed, and in relation to our sleep.
Consider “Susan,” a 34-year-old woman with MS. She is tired when she gets home from work, so she heats up some food, and then gets into bed to eat dinner. She then lays out her bills on the bed to determine which need to be paid, and pays her bills. Then she catches up on some work for her office. Susan has developed habits that make her bed a place of work, dining, and sometimes turmoil (when she doesn’t have the money to pay her bills). Her bed is no longer a place of peace, comfort, and sleep.
“Jerry” is a 55-year-old man with MS who likes to watch TV late at night. Some days he goes to sleep at 1 am, but at other times, he goes to bed at 3 am or even later. He is almost always tired the next day, and as a result, takes a nap. His nap times can vary – sometimes they are for 15 minutes, and other times for an hour. His naps prevent him from feeling tired enough to go to bed by midnight, and he stays up late again.
Strategies to Help: Many sleep problems in MS and in the general population can be solved by changing our habits about sleep, improving our sleep hygiene (or sleep habits). Below is an adaptation of the standard program to improve sleep hygiene:
- Use your bed only for sleep and sex
- Reduce stimulant use (caffeine) later in the day; avoid alcohol use in the evening
- Go to bed at the same time every night
- Stop working, making phone calls, or participating in any stressful activity two hours before bedtime
- Set your alarm clock for eight hours after bedtime
- When you get into bed, think about pleasant memories from the past; try to remember more and more details
- If you haven’t fallen asleep after 20 minutes, get out of bed
- Once out of bed, sit in a comfortable chair in a quiet place and read something that is not stimulating; when you feel like you are ready to fall asleep, get back into bed, but repeat steps 6 and 7, as many times as needed
- Discontinue napping during the day
With regard to alcohol, we know that drinking a small amount of an alcoholic beverage can help a person to fall asleep. What people often do not realize, however, is that alcohol has a “rebound” effect, causing people to wake up during the night. It also causes people to need to urinate more frequently during the night, another cause of lost sleep.
Working with a trained psychologist on your sleep hygiene program is advisable, as a program often needs to be individualized or “tweaked” for each person, and adjusted over time. When people have tried to improve their sleep hygiene and have been unable to improve their sleep, they sometimes use medication to help them sleep.
You will find many advertisements on TV for sleep aids, and they all show a person refreshed in the morning. Most people who use “sleeping pills” do not wake up refreshed; instead, they wake up feeling drowsy.
There are alternatives to sleeping pills.
An older form of antidepressants (tricyclics) is sometimes used because they are sedating. These types of antidepressants are not habit forming and a person can stop at any time. Many people find the supplement melatonin to be helpful. If used occasionally, antihistamines like Benadryl® (diphenhydramine HCI) can be taken for their sedating side-effects. But again, most sleep problems can be solved without medication.
If you are not sleeping well at night, finding solutions to your sleep problems is well worth the effort, so you can get a better quality and increased quantity of sleep. Most of us require 7 1/2 to 9 hours of sleep, and some require more. Without enough sleep, fatigue can become a big problem. But if you examine what is interfering with a good night’s sleep, consult your physician, and take the necessary steps to resolve your sleep issues, you should feel better and experience less fatigue during the day. Sleep well!
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