There are about 80 different types of sleep disorders, and about 25% of people (that’s 70 million Americans) suffer from them.  The inability to fall asleep or to stay asleep, called insomnia, is the most common. Multiple Sclerosis (MS) is well represented in the Sleep Disorders department.

On her “good” nights, she awoke as frequently as every hour; on the worst ones she lay awake until breakfast.

Sleep problems are common in MS, but are somewhat under recognised. In a study from the UK, as many as half of the patients with MS (of varying severity) studied had some sleep-related problem. The commonest was insomnia, usually related to spasm, pain, immobility, bladder problems, or medication.  It has also been felt that periodic leg movements may be more common in MS. Besides these relatively common problems, there are more than a few case reports of some unusual or rare sleep disorders in MS.

MS patients have pain, depression and anxiety all of which can cause insomnia However, most Insomnia is Psychophysiological- that is related to a pattern of sleep difficulties that is not specifically due to a physical trigger or a recurrent identifiable cause. This is true in MS too.

Sleep disorders are twice as prevalent among MSers than non-MSers. These disorders can be sleep-related movement disorder, nocturia (frequent visits to the bathroom), tinnitus (ringing in the ears), obstructive sleep apnea or OSA (tissues of the throat interfere with breathing), central sleep apnea or CSA (brain slows down regulation of breathing), REM sleep behavioural disorder (person acts out dreams during sleep), and narcolepsy (falling asleep unexpectedly and at inappropriate time). Throw in the usual MS symptoms, such as numbness, tingling, spasms, pain, and it’s no wonder that sleep becomes an issue for many of us.

Sometimes, unco-ordination in breathing, which is more common in MS than in those without it, can worsen the upper airway obstruction which is the major cause of OSA. In MS, the central control of breathing can be impaired due to plaques in the brain stem. This can cause Central Sleep Apnea. MS patients, like many others can have combinations of OSA and CSA when tested in an overnight Polysomnogram (PSG).

All of these can be operative in Multiple Sclerosis, the most common being OSA which is the leading cause of Excessive Daytime Sleepiness in the vast majority of people with or without a concurrent disease.

Improving your sleep

Is there anything we can do to make these sleep problems better? Try some of the following tips.

• Do not nap during the day.
• Do not consume caffeine within 4-6 hours of bedtime
• Do not smoke or use nicotine products close to bedtime or during the night.
• Do not drink alcoholic beverages within 4-6 hours of bedtime.
• If the need to use the bathroom is keeping you up at night, reduce fluid intake in the evening. It is still important to drink the recommended amount of fluids during the day. Also go to the bathroom immediately before you go to bed.
• Do not go to bed hungry or soon after a heavy meal. If you are hungry, eat a light snack or drink a glass of warm milk.
• Exercise regularly, preferably during the day. Avoid vigorous exercise 3 hours before bedtime.
• Set your alarm to wake up at the same time every day, even on days when you’re off work and on the weekends.
• If you have sleepless nights and lie in bed until it seems like the sun is coming up get back up if you have not fallen asleep after 10 to 15 minutes. Find something to do that is relaxing to you, such as putting together a puzzle, reading, or writing a letter to a friend.
• Rather than watching TV, which is a passive activity, do something active so that natural tiredness can build up–although you should avoid physical activity when trying to become sleepy.
• I’ve been told “Remember that your bed is only for sleeping. Any of the above activities should be done in another room, not your bedroom. Return to the bedroom only when you feel tired.” But personally I much prefer to stay warm in bed as I try things to tire me out.

Finally these relaxation techniques can help you fall asleep or improve your sleeping patterns:

• Repetitive mental exercises. Close your eyes, and silently repeat a word or short phrase. Let your breathing become slow and steady. Repeat the phrase for 10 minutes until you feel more relaxed.
• Visualization. Imagine that you are in a peaceful environment, such as lying on a beautiful beach, relaxing and taking in the rays.
• Progressive muscle relaxation. You can mentally put each part of your body to sleep by tensing and relaxing your muscles. People with spasticity should be careful because this exercise could trigger muscle spasms.

Here’s hoping there’s a way to make things better. If you have your own technique please leave a comment and share it with others.

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Immunomodulatory Treatment Improves Cognitive Function in MS Patients

Patients with relapsing-remitting multiple sclerosis (RRMS) who receive glatiramer acetate (GA) or interferon (IFN) beta show a reduction in cognitive impairment and relative stability of cognitive and affective variables at 2 years, according to the results of an observational study presented here at the 19th Meeting of the European Neurological Society (ENS).

The aim of the observational study was to evaluate the long-term effects of first-line disease-modifying therapies with GA or IFN beta on cognitive functions, affective status, fatigue and quality of life in patients with RRMS (ITACA study).

“A total of 752 patients with RRMS and a

mean age of 36 years were enrolled in

79 Italian centres,” explained principal investigator Monica Falautano, PhD, Functional Unit of Psychology, IRCCS H. San Raffaele Milano, Milan, Italy, on June 24.

Study patients were treated with either GA or IFN beta.

At baseline and 6, 12, 18, and 24 months, a fatigue and physical disability evaluation was performed.

Cognitive and affective assessments were performed at baseline and 12 and 24 months.

A significant reduction [P < .0001] in cognitive impairment was observed at the 24-month follow-up, Dr. Falautano noted. At baseline, 40% of all patients showed mild cognitive impairment, and 16% showed severe cognitive impairment, which the researchers said was reduced to 30% and 11%, respectively, at 2 years.

A higher proportion of GA than IFN patients had been affected by severe cognitive impairment (20% vs 12%). At the 24-month follow-up, the percentage of severe impairment was reduced to similar amounts in both treatment groups (12% and 10%, respectively).

According to the mean Montgomery-Asberg Depression Rating Scale score, significant depressive symptoms were missing both at baseline and at the 24-month follow-up.

Physical and mental health assessed with the Multiple Sclerosis Quality of Life 54 questionnaire correlated highly significantly at baseline and at the 24-month follow-up (P < .001).

Patients did not report any changes in perception of their quality of life after 2 years of treatment. No changes were observed in Kurtzke’s Functional Systems Scores.

“The immunomodulatory treatment may have an impact on cognitive function,” Dr. Falautano summarised the primary result of the study. “Nevertheless, a longer follow-up is advisable to confirm our results.”

Funding for this study was provided by Sanofi-Aventis.

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Jon Wegner

The second noticeable symptom with my multiple sclerosis that I experienced in 1991 was fatigue or tiredness. But again if I search my memory banks I can go back to at least 1980 with the fatigue and tiredness problem. But when you’re 20 years old you don’t think of major health problems. I would always make excuses to myself as to why I was tired but it was probably the early stages of my MS. But I still remember saying to myself quite a bit, why am I so tired? One day a couple of years ago I was thinking about my college days. Two thoughts came to mind that I’ve never been fully able to explain until now. The first is that in college I used to lie on my bed to study. I lived in an efficiency apartment. I usually went to the library to study but if I was home my bed was the place of choice to crack open the books. Actually, in an efficiency it was the only place. This would have been in 1979-1981. It never failed but every time I did this I would fall asleep. I would just take a catnap for 10-15 minutes but it always screwed up my studying. When I woke up I was refreshed and I would continue to study for about 30 minutes but invariably I would doze off again. That makes it kind of hard to get anything accomplished.

The other thing I remember is studying at the library in a study carol. Unless I really had something interesting to occupy my mind I would doze off there, too! I’d fold my arms and lay my head down and I would doze off for 5 to 10 minutes. It seemed to me that I could sleep anywhere. lol In my defense this all made sense. At the time I was carrying a full load of classes, I worked 20 per week at a local grocery store and my girlfriend and I used to meet every weekend in my hometown of Rochester , Minnesota . The trip from La Crosse, WI to Rochester, MN is 90 miles one way. It’s all interstate highway so the roads were always good. It was also a good time to unwind from a week of school and work. But it was 180 miles round trip that I probably didn’t need considering the rest of my schedule. Looking back who wouldn’t be tired? At least that’s how I justified my dozing off alot. I did that for three years. I think of that now and I get exhausted just thinking about it! I must have been crazy! But it was puppy love and my first so I just sucked it up and did it.

Fatigue is still a major problem for me today. I think it’s one of the most interesting symptoms that a person with multiple sclerosis can have. Fatigue is an indescribable feeling unless you have it. When you see another person with MS and you’re talking about symptoms all you have to do is mention fatigue. The other person will start nodding their head and simply say, “yea, I got it”! For me it’s a feeling like my head is overloaded or jam packed with information and I cannot take anymore. I just feel exhausted and I want to lie down. This is sometimes called “brain fog”. Sometimes I get an upset stomach, too. When I’m like this I don’t think or hear clearly and it’s not a good time to be making major decisions or driving my van. I usually try to work through it but if it’s really bad I take a nap for an hour or so. I can get fatigued sitting on my butt talking on the phone, laughing real hard with a friend or typing on my computer. I don’t remember things very well when I’m fatigued. I’ve actually dozed off while typing or reading on my computer.

I remember working plenty of days in my 20’s where I would work a 12 hour day. For the average person 6-8 hours of sleep would refresh them for the next day. Now I can’t do that and a long day like that would take at least 10 hours of sleep. Another problem is that I can’t sleep 10 hours. Nowadays, I take two night time Tylenol and at least I sleep 5 good hours straight through. When my ex wife and I would drive to North Dakota to visit relatives we would leave at 5 pm on Friday night. It was a four hour drive. Then we would leave to come back home about 3pm on Sunday! So in about 48 hours we would drive eight hours and about 500 miles. This was all interstate highway but it still wears a person out who is troubled with fatigue like me. That was just too much for that short of time. It used to take me 2 days to recover. Below is the definition of fatigue that I got from the Wikipedia dictionary on the internet.

The word fatigue is used in everyday living to describe a range of afflictions, varying from a general state of lethargy to a specific work-induced burning sensation within one’s muscles. It can be both physical and mental. Physical fatigue is the inability to continue functioning at the level of one’s normal abilities. It is ubiquitous in everyday life, but usually becomes particularly noticeable during heavy exercise. Mental fatigue on the other hand results in sleepiness. There are two types of fatigue. There is physical fatigue and mental fatigue.

Physical fatigue –

This muscle weakness or lack of strength is a direct term for the inability to exert force with ones muscles to the degree that would be expected given the individual’s general physical fitness. A test of strength is often used during a diagnosis of a muscular disorder before the etiology can be identified. Such etiology depends on the type of muscle weakness, which can be true or perceived as well as central or peripheral. True weakness is substantial, while perceived is rather a sensation of having to put more effort to do the same task. On the other hand, central muscle weakness is an overall exhaustion of the whole body, while peripheral weakness is an exhaustion of individual muscles.

Mental fatigue – In addition to physical fatigue there can also be mental fatigue, not necessarily including any muscle fatigue. Such a mental state in turn can manifest itself both as decreased wakefulness or just as a general decrease of attention, not necessarily including sleepiness. In any case, this can be dangerous when performing tasks that require constant concentration, such as driving a vehicle. For instance, when a person is sufficiently sleepy he or she may experience microsleeps. However, objective cognitive testing should be done to differentiate the neurocognitive deficits of brain disease from those attributable tiredness.

Causes – Fatigue is typically the result of working, mental stress, jet lag or active recreation. It can also be from boredom, disease and lack of sleep. It may also have chemical causes such as poisoning or mineral or vitamin deficiencies. The sense of fatigue is believed to originate in the lower brain. All I know is that my fatigue is now the major problem with my MS. I can sleep a full night and wake up tired. It just never goes away. I can’t walk very well and I ride my scooter 95% of the time but in my opinion my fatigue is more crippling than my legs are! At least with my legs I can ride my scooter and get where I have to go. I take one Provigil pill per day which keeps me awake but I’ve been taking it almost eight years and I think my body has become used to the drug. One Provigil used to wire me for a whole day. I probably looked like I was on something illegal but now it only works until around 10 am.

Jon Wegner is 49 years old and has multiple sclerosis. He’s a resident of a small town close to Fargo, ND. He’s lived there for four years after being a lifelong Minnesotan. Jon now rides a three wheel electric scooter to get around. He can be seen scooting all over his little town everyday. Jon’s website, e-book, FREE newsletter and articles can be found at www.mymsbookandnewsletter.com Sign up for his monthly newsletter and receive a FREE copy of his e-book, “I’ll Run Again In Heaven”. It normally sells for $14. Jon’s articles can also be purchased at his website. Jon’s best affiliate is Hometown Quotes at www.jonwegner.com

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When We Say We Can’t do Something Because We don’t Feel Well, Put yourself in Our Shoes By Using The Examples of our Symptoms Below…

- Painful Heavy Legs: Apply Tightly 20 LB ankle weights and 15 LB thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down – how ya’ feeling now?

- Painful Feet: Put equal or unequal amounts of small pebbles in each shoe then take a walk, if we are mad at you we would prefer needles to pebbles.

- Loss of Feeling in Hands and/or Arms: Put on extra thick gloves and a heavy coat then try and pick up a pencil, if successful stab yourself in the arm.

- Loss of Feeling in Feet and/or Legs: Ask a doc for a shot of novocaine in both of your legs and then try and stand up and walk without looking like the town drunk. Hopefully you won’t fall down.

- TN (Trigeminal Neuralgia): Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw preferably daily.

- Uncontrollable Itching: Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments wear them for an entire day.

- Tingling: Stick your finger in an electrical socket – preferably wet.

- Tight Banded Feeling: Put 12 inch wide belt around you and make is as tight as you can and leave it there for the entire day. How ya’ breathing?

- Shots: Fill one of our spare needles with saline solution, saline won’t hurt you, we would love something worse but don’t want to end up in jail. Give yourself a shot everytime we do our shot.

- Side Effects From the Shot: Bang you head against a wall, wrap yourself in a heating pad, wrap your entire body with an ace bandage tightly then finally treat yourself to some spoiled food or drink.

- Trouble Lifting Arms: Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house.

- Spasticity: Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves then go dancing.

-Poor Hearing/Buzzing in Ears: Put a bee in each ear and then put a plug in each one…Bzzzzzzzz

- Balance and Walking Problems: Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now get up and see what happens.

Urgently Needing to Pee: We put a .5 liter remote controlled water bag and drip tube in your pants, we point out 2 restrooms in a crowded mall, then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a restroom. Just for spite we may make that 20 seconds without telling you.

- Bizarre and Inexplicable Sensations: Place tiny spiders on your legs or arms and allow them to periodically crawl around throughout the day, heck all day would be good too.

- Pins and Needles: Stab yourself repeatedly with needles all over your body or better yet….Get a very large tattoo in your most sensative area.

- Dizziness (Vertigo): Get on a gently rocking boat all day and all night and take several walks around the deck with your eyes closed.

- Fatigue: Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel. Please do not compare MS fatigue to you being tired from only a few hours of sleep – it’s not the same at all.

- Cognitive Function (Brain Fog): Take a liberal dose of sleeping pills but stay awake. Try and function properly and think clearly. To make it even more real without killing yourself of course, take the sleeping pills with a small sip of wine.

- Bowel Problems: Take a 4 day dose of an anti-diarrhea medicine followed directly by a 3 day dose of stool softeners for a minimum of 3 weeks, at the end of 3 weeks sit down on a hard uncushioned chair and stay there til tears appeared.

- Burning Feeling: Make a full pot of boiling water and then have someone fill a squirt gun with the boiling water and shoot it at yourself all day long. However, you can give us the pleasure of shooting you instead…optional of course.

- Intention Tremor: Hook your body to some type of vibrating machine try and move your legs and arms…..hmmm are you feeling a little shaky? You are not allowed to use anything fun for this lesson.

- Buzzing Feeling When Bending Our Heads to Our Chest (L’Hermitte’ s): Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in.

- Vision Problems (Optic Neuritis): Smear vaseline on glasses and then wear them to read the newspaper.

- Memory Issues: Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn’t get them. When you come back from shopping again they take the list and erase three things and ask why you bought those things.

- Foot Drop: Wear one swim fin and take about a 1/2 mile walk, nothing else needs to be said for this one, you’ll get it.

- Depression: Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one or more of the animals and when you come back the next day you come in while they are putting her/him asleep.

- Fear: Dream that you have lost complete feeling in your feet and when you wake up wiggle your feet, just so happens they don’t move. Think about this every night wondering whether something on your body won’t work the next day when you wake up.

- Swallowing: Try swallowing the hottest chili pepper you can find.

- Heat Intolerance or Feeling Hot When it’s Really Not: You are on a nice vacation to Alaska. It’s 35° outside and 65° inside. Light a fire for the fireplace and then get into it. Once you have reached about 110° tell me how you feel, even a person without MS would feel bad, now add all of the above symptoms

Welcome to our world.

Then Finally…

After subjecting yourself to the items above, let everyone tell you that you are just under a lot of stress, it’s all in your head and that some exercise and counseling is the answer.

Cheree’s Added Note: This may sound harsh or exaggerated, but trust me when I say that it’s all true. MS is most times considered the ‘invisible’ disease because alot of us with MS can walk around looking like we’re ok! What you don’t see are the rough times spent at home, alone, at night, when MS causes us the most pain. The next time you see someone with a chronic illness and see them smiling, just remember that they’re probably dealing with a whole lot more than the eye can see…and let them know that you care!

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