MS & Sleep

 People with MS often have trouble sleeping, but the problems may not be due to the disease itself. Stress, spasticity in the arms or legs, or depression that can come along with MS can interfere with a good night’s rest. MS is also associated with a number of sleep disorders; The most common are insomnia, nocturnal leg spasms, narcolepy, and Restless Legs Syndrome (RLS). Studies have also shown that pain, medications, and frequent trips to the bathroom also influenced sleep among MS patients.

MS affects how I sleep in a number of ways. I have extensor spasticity where my legs like to remain straight. Once I get into bed, I experience a number of spasms that straighten my legs, stiff as a board. Adam helps me with stretches that bend my legs. He then helps me onto my side and bends my legs into a relaxed fetal position so I can fall asleep (I have always been a side sleeper and it is more comfortable for my legs to remain bent). I take a couple medications to help me sleep. The first drug I take is called clemastine - my neurologist prescribed it because it has shown, in studies, to help with remyelination - the regeneration of a nerve’s myelin sheath. It is nothing more than an antihistamine however the study uses a larger dose than over-the-counter medications. I take half of what was prescribed in the study because, as you know.  antihistamines can really make you drowsy. I also take a drug to relax my muscles to help me sleep. This combination of drugs helps me to sleep about 3 to 5 hours. Once the drugs wear off, I usually wake up from pain and/or spasticity. I often find that my legs have straightened - my hips and knees remain straight with the legs crossed over at the ankles, I have trouble bending my legs on my own once they have straightened so either I just drift in and out of sleep and deal with the discomfort or I wake Adam and ask him to bend my legs for me. The pain I experience that can also wake me is usually pressure pain in my hip from lying on my side or nerve pain.

Fortunately, I usually get enough sleep for me to be able to function the next day. I know this is not true for all MS patients. Some things that can help you get a better night’s sleep are:

• Get outdoors for some natural sunlight during the daytime. 
• Limit long naps during the day.
• Exercise. Not to the point of exhaustion, but studies have shown that doing some  exercise every day helps you to sleep at night.
• Create a restful atmosphere in the bedroom, free from distractions, noise, extreme  temperatures and light.
• Stretching, yoga, meditation, or a warm bath before bed may help with sleep.

If your sleep problems affect your daily activities, talk to your doctor to have your sleep problems evaluated and explore safe and effective solutions. 

Cognition & MS

Some of the most common but hidden symptoms of MS are the changes people may experience related to cognition. The majority of people with MS experience intermittent cognitive symptoms. However, a person with almost no physical limitations can have significant cognitive impairment, while a person who is quite disabled physically can be unaffected cognitively.

In people with MS, the body's own immune system attacks the tissue surrounding the nerve fibers in the brain, spinal cord, and optic nerves. This covering is made of a fatty substance called myelin. It insulates the nerves and helps them send electrical signals that control movement, speech, and other functions. When myelin is destroyed, scar tissue forms (sclerosis means scarring) and nerve messages are not transmitted properly. Depending on the extent and location of damage in the central nervous system, patients with MS may experience a wide variety of symptoms. MS is different in every person.

My MS mainly affects my mobility without much influence on my cognition – although I do have trouble with verbal fluency (word-finding); when that certain word is on the tip of your tongue. Other people may find it takes longer to solve problems. Some may have mild memory loss or trouble concentrating. Loss of cognitive function can influence one’s ability to work. While I would love to walk again, I am thankful to still think, focus, and work.  I do get a glimpse of these other symptoms when I get overheated or extremely fatigued. Heat and high humidity may temporarily worsen symptoms. My mind and body go “dumb” when I am hot. Weakness increases, my mind seems to shut down, and I have trouble communicating. It is very frustrating. Thankfully, once I cool off, I return to myself.

Some people can’t imagine life in a wheelchair. Well, it sucks, but I can still get around. I can’t imagine a life where I can’t think, speak, or live the life I know. I love to read and watch movies, and even work. If I couldn’t do those things, I’d feel trapped, whereas a wheelchair gets me moving, I don’t see an easy fix for cognitive impairment. Selfishly, since I am stuck with MS, I am happy my MS went the way it did. I am afraid for what the future might bring to me cognitively– just like those who are afraid of life in a wheelchair. MS is a bitch of a disease.

Cognitive impairment substantially impacts the lives of patients with MS and their families. Understanding these issues and showing compassion can help patients with MS deal with these invisible symptoms.

From the NMSS: Mood and Cognition in MS (What You Can Do)