A Question For People With MS

[Steven Y Park, MD]

Dr. Park here from the sleep-breathing forum. I answered Laura's question about sleep and MS here:

http://www.medhelp.org/posts/show/756264

I'm taking an informal poll for people with known MS:

What's your favorite sleep position? Is it your back, side or stomach?

After I tally up the results, I'll give you the reason that I ask.

[rendean]

Sleep position -side

[Auspiciousme]

either side

[mae1]

unfortunately I can only sleep on my back now.
I wake up with painful numbness if I sleep any other way...
April

[cuttersmom]

Start on my stomach, but I think I end up on either side.

[ShadowsSister]

Since 1997 I have had to sleep on a recliner, due to spasms when I try to lay down. I am at a slight angle, not quite in an up-right position. Spasms are so much worse when my body starts to relax. Sleep is mostly cat-naps

[Mand125]

Start on my stomach but end up on either side.

[PatHC]

dx with mild MS last December - intermittent sleep problems - mainly sleep on my right side due to bicep tendinosis on left side from the falls.... and my partner snores quite a bit and yes my Dad did too!!

Congrats on the new baby

It will be interesting to see your discussion about this poll

Regards
Pat

[Steven Y Park, MD]

mae1 and ShadowsSister,

When you were younger, did you used to sleep on your side or stomach?

[sayadia]

I use to sleep on my side and still try to. Can only lay on right side due to pain on left.. mostly only sleep on my back tho. Arms go numb on my sides. I have herniated discs in my neck. Those more than my ms dictate my sleep I think

[sllowe]

Hi Dr. Park - Welcome!

My favorite sleep position: Back

I'm excited to hear what you have to say about this!

-Shelly
dx'd in 07

[sunshine8]

Side would be my first choice, but back is a close second. Never stomach.


-Amy
RRMS dx'd Oct 08

[essdipity]

I sleep in all positions but side is first choice.

ess

[airyona]

I sleep on my stomach, choke if I'm on my back.


Airyona

[brin]

On either side

[Steven Y Park, MD]

Very interesting....

Anyone else?

For the few of you who sleep on your backs, did you always do so even when you were younger?

[sllowe]

It's me, fellow back sleeper.

I'm not sure, but remember mostly, yes.  I remember waking on my stomach, or my side, but child bearing years changed that (started at age 20), and I've never went back.  I do wake at times on my side.

Thanks again!

Who else? We have a dx'd thread that we can resort to if need be to get more participation.  

[Lulu54]

Hi Dr. Park,
Thanks for wandering off your expert forum and coming to visit us here.  As you are seeing from the response to your question, we have a very engaged community.  

For you question, I used to sleep on my side, curled in a fetal postion almost - and usually my left side.  I can remember sleeping like that as a child because I shared a doulbe bed with my sister and I always took the blankets off of her!

For the past few years I have been a back sleeper, mainly.  But do find myself tossing more these days and shifting from back to side to side to stay comfortable with the assorted body aches through the night.

I'll be looking forward to your explanation,
Laura/aka Lulu

[BOK2Bjan]

Now - right side in a sitting position.  As a child, back.  I have Sleep Apnea (Central and Obstructive), and Sys. Scl. w/ sleroderma esophagus, Barrett's & hyatal hernia.  I aspirate gastric contents when sleeping. MS treatment Copaxone - causing such painful welts, hard to sleep on side of injection.  Sorry too long.  Jan

[Khiba]

Sleep on back and never move a muscle until I wake up. Can sleep on right side sometimes for a little while. Left side bothers my stomach. Grew up as a stomach sleeper.

Khiba

[lmax0021]

Hi Doc

I go to sleep on sides but quite frequently wake up on back.

Robin

[Rena705]

Diagnosed in 1993...right side when falling asleep, awaken on either right or left side...never sleep on back or stomach.

[ChunkyMonkeysMommy]

I have what is apparently permanent damage in my left leg from a previous relapse. After going all day on it, when I try to go to bed it is very painful. I've found that I get the most relief lying on my left side, with that leg stretched out as straight as possible. Once I've slept that way for a while, I can roll to my right side or back. However, I'm currently in relapse mode (yay) and my upper back is killing me. I've found that lying on my back makes it even worse. It may not feel so bad at the time, but the pain is so much worse when I get up in the morning. Nothing like that back-crushing/burning feeling to wake you up in the morning. It's not exactly like a nice cup of coffee, but it's definitely eye-opening. My last relapse was like this also. They found a lesion on my spine that time. I'm guessing that this is hitting near the same spot as it has also made my leg pain worse.

Anxious to see the results of your poll! :)

[AmishErin]

I sleep on my right side.  Unless I am very very tired then I fall asleep in any posistion that I happen to be in.

If I choose to go to sleep though... it is on my right side

[opie74]

I usually sleep on my left side.  

Before puberty, I liked my stomache.  Girls tend to out-grow that position.  Now it only gives me a crick in the neck!
  
If I lay on my back, both arms go to sleep.

[mae1]

I have always slept on my stomach and or sides until about the last year and a half due to pain and numbness...
hope this answers your question.....
april

[Spuk]

I love sleeping on my back but I have back issues so I always turn to my right side. If I sleep on my left I cannot move or turn or get up on my own for a long time until I pull the sheets to roll over.

[Heather3418]

I prefer to sleep on my right side, although you know that none of us stay in one position throughout the night.

For all of us that have read your articles, we thoroughly enjoy them.  Thank you.

Sincerely,
Heather

[JJFL]

Hi Doc, ShadowsSister

I am like ShadowsSister I sleep at a "slight angle, not quite in an up-right position. Spasms are so much worse when my body starts to relax  

ShadowsSister is the first person I have seen that says they start to spasm when they relax.  A few medical people say that that is when people have spasms but never ran into someone that does it......

Slept on stomach as a child.....

JJFL....

[doublevision1]

I favour sleeping on my left side, fetal-like position.

[Quixotic1]

I have slept at about a 45 degrees in a recliner for three years now.

When I was younger I fell asleep on my side and awakened on my back.

Quix

[Steven Y Park, MD]

JJFL and Shadowsister,

It's interesting that you say that your spasms are worse when you relax...

All these findings are VERY interesting.....

[truelove47]

Sleep on right side

[Lulu54]

Besides interesting, all these responses tend to lend credence to the article I cited to you - it says MS patients are twice as likely to have sleep disorders than the general population.  I think your practice could thrive on just treating all of us here if you could make house calls all over the world.  LOL


Shadowsister is having surgery Friday to have her morphine pump replaced, so she may not be here in the next few days.  If you have a specific question for her, I can always give her a call.  she is a very gracious about sharing her experiences of living with MS for 23 years.

- Laura

[JJFL]

Hi Dr.Park,

I am told I have Paroxysmal Dyskinesia and Allodynia with my MS.  The spasms get worse at night and when I start to relax. I always thought it was the hypnic or myoclonic Jerk going haywire because of the damage to my nerves.

So I guess you would be the person to ask if this could be possible?  Let me know if you have any other ideas....

JJFL......

[Steven Y Park, MD]

JJFL,

Just to make it clear, I'm an ENT with an interest in sleep-breathing problems. I'm visiting this site to take a poll on a sleep issue that may pertain to MS patients.

When you say relaxed, do you mean just as you fall asleep, or later on as you reach deeper sleep?

I'll tally up the votes and give everyone my interpretation tomorrow.

[willowwoman7]

I start out on my back, once I get my cpap settled. Sometimes, as I am falling asleep, I get that jerk somewhere in my limbs. Once, my entire arm raised up and dropped down, luckily, missing my husband. I usually turn to the side before completely asleep because of back pain and legs going numb. Almost always on my side.

[ChunkyMonkeysMommy]

"Luckily, missing my husband." I got a chuckle out of this, sorry. I, for one, think my husband could use a good whomp to wake him up now and then. Consider it payback for his snoring, lol. (I kid, of course. hehehe!)

[JJFL]

Hi Doc,

When I start to get sleepy the spasms start and it gets worse the closer I get to falling asleep.  I also wake up late at night but don't know why.  

JJFL....

[Karen99]

It's most comfortable to start sleep on my stomach but end up sleeping on my side.

Looking forward to the results.  

[jensequitur]

Interesting questions!

I sleep on my side, either left or right.  I find I'm most comfortable with the top leg pulled up at a right angle, the other straight out.  My feet tend to cramp up so if I keep them pointed, they don't do that.  I think I've always slept on my side.

Hey, JJFL - I have problems with my legs involuntarily jerking in the mornings.  Sometimes my right leg (the problem child!) starts jerking, and won't stop until I force it to relax.  It seems to be action myoclonus - at least that's what the neuro called it.  I also get spinal myoclonus, where my back arches involuntarily.

[frankic]

All over the place - front / back / either side but if I end up on my back its not for long- I change positions many times every night.

[Steven Y Park, MD]

Here's the official breakdown:

21 side sleepers
0 back sleepers
9 stomach sleepers

For the few of you who now sleep on your back, you also indicated that when younger, you used to sleep on your side or stomach. Usually, back spasms or joint problems can force you to sleep on your back, even though you prefer not to.

The reason I took this poll is that I've noticed that almost every patient that I've seen with MS has a sleep problem. Most patients (as well as their doctors) attribute this to the pain and muscle spasms that typically accompany MS. If it were due to insomnia or pain only there should be a more even distribution on all sleep positions.

You would think that you normally should sleep on your back, but many people prefer to sleep on their sides or stomach. This is because of human's unique upper airway anatomy. Because our voice boxes are located lower down in the throat under the tongue, this not only allowed for complex speech and language acquisition, but also predisposed our tongues to fall back more easily when on our backs (due to gravity). However, with a major change in our diets from organic whole foods to processed refined foods in the past 100 years, our jaws are getting smaller, with more dental crowding.

Dentists will tell you that there's more dental crowding these days. Having dental crowding means having a smaller jaw and less space for your tongue, which can fall back due to gravity and possibly total collapse and obstruction when in deep sleep (due to muscle relaxation). Take a look at my article on UARS for a more complete description.

What I've noticed is that people with smaller jaws tend to prefer to sleep on their sides or stomachs only, and are usually miserable if they have to sleep on their backs. Most people compensate by sleeping on their sides of stomachs, but typically, it's not good enough. This causes severe deep sleep disruption, leading to lesser quality sleep. This sets off a stress response that hyper-sensitizes your nervous system.

In Robert Sapolsky's classic book, Why Zebras Don't Get Ulcers, he argues that multiple repeated small stress states will heighten not only your nervous system, but your immune system as well.

So this brings us back to the question: Is it mere coincidence that the vast majority of people with MS prefer not to sleep on their back, or is there a connection between the two? What do you think?

[doublevision1]

Your observations are very interesting.  Hard to respond to your question though.  To guess whether it is meaningful that those with MS tend to favour not sleeping on their back (if this is true), it would be useful to know how this group compares in sleep position to a healthy population.   What is the sleep position preference of the latter group?  Sorry if I missed that info somewhere in your post.  I'm kind of sleepy right now... ;)

[Lulu54]

So the stress that we experience from the sleep problems we all seem to experience are added to the list of other stressors that can exacerbate our symptoms. Now if only we could all get a good night's rest and lessen our stress.

My guess for an answer to your question is the body of an MS patient is constantly on alert  and the rigid position of being straight on our back intensifies the sensations in our nervous system.  By being on our sides we are able to provide slack to our muscles in those places that would otherwise be taunt if we were on our back.  Again, just my guess.  I wonder what the others here might think.

  Thanks Dr. Park for spending some time here with us.  I hope our members will stop through your forum and learn more about your sleep methods and sleep hygiene ideas - perhaps a few new habits would be helpful in getting a few quality zzzzzzzzzzzzzzz's.  

Many thanks for your interest in us and our sleepless nights,
Laura

[Steven Y Park, MD]

Most healthy people can sleep on their backs. People with sleep-breathing problems prefer to sleep on their sides or stomachs. I find that very intriguing that almost everyone who answered my question prefers not to sleep on their backs, either currently or in the past. I don't know if there's a common link between MS and sleep apnea, but I wouldn't be surprised if a study comes out suggesting this in the near future.

[fortywhat2]

Hi,
I am a side sleeper with a pillow between my knees and a pillow under my arm for support and relieve pressure.  I should also note that I sleep with O2 for mild apnea.  As a child I slept on my stomach or side.  I am also a s/p discectomy/lamenectomy 2002.
Please excuse any spelling or words problems I'm having a difficult time with my thoughts reaching the keys :)
Debbie
~live as if all your dreams came true~

[NZer1]

I am most comfortable on my right side, if I lie on my left I have tremor type spasms that keep me awake. I am able to lie on my back and go through cycles of waking and sleeping. I am not able to lie for more than half an hour due to pressure point type of discomfort in my hips, knees and feet. I am still active (can walk one kilometer and use exercycle 5 mins twice a day) and most of my symptoms are sensory plus bladder frequency and major fatigue.

[jensequitur]

I avoid sleeping on my back mainly because my upper leg muscles and hips feel overextended after a few hours.  My jaw isn't that large - I've had upper and lower wisdom teeth removed.  However, I don't have problems with sleep apnea.  Maybe if I slept on my back, I'd have more difficulty!

[jensequitur]

I will say that my sleep problems are simply that I can't fall asleep.  This doesn't happen often.  But I'll lay down, and sleep becomes the furthest thing from my mind.  I could probably go and read a book, or watch TV, but I know I'm tired and I need to sleep, so I toss and turn.  

[Steven Y Park, MD]

jensequitur,

The fact that your jaws are on the small side leads to dental crowding, causing you to sleep on your side. You can't know whether or not you have sleep apnea—only a sleep study can determine this. It's been shown that even thin, young women that don't snore can have significant sleep apnea, and what's worse, if you stop breathing 25 times every hour but wake up after less than 10 seconds each, then you're told your sleep apnea score is 0!

This lesser version of sleep apnea is called upper airway resistance syndrome, and can lead to problems falling asleep due to an overactive nervous system. You may benefit from cognitive behavioral therapy for insomnia. Check our Dr. Jacob's insomnia forum.

[Quixotic1]

Dr. Park - I can't thank you enough for spending time on our forum and teaching us.  That is over and beyond the call.  You rock!  I read your answer about most healthy people being able to sleep on their backs and I realize that we with MS are not usually included in "healthy."  But, we have discussed sleep position before.  For many of us our sleep position is determined by pain and spasticity.

I have a specific question.  Normally I sleep about 10 hours per night.  But, I cycle through periods ( a couple months or so at a time) where I sleep 12 to 16 hours a day.  I have always felt that this was just hypersomnia from MS.  I awaken almost every 3 hours for one reason or another - needing to urinate or my cats needing something.  But, then fall back asleep immediately.  Finally, I come fully awake and can be functional.  If I get up too soon, I will quickly feel physically ill for which the only cure is more sleep.  My sister says my breathing is audible, but she never notices any pausing.  She is up and within hearing distance of me for the last 3 to 5 hours of sleep.  Do I need a sleep study?

My most disabling symptom of the MS has always been crushing fatigue, but not particularly sleepiness.

In the final analysis - Is insomnia really anything we need to lose sleep over?  ;))

(couldn't resist) Quix

[Lulu54]

Q asks about sleep studies.  With the known connection between sleep deprivation and stress, and the equally recognized stress and MS exacerbations connection, it would seem logical that a sleep study would be in order for each and every MS patient.  

If there are causes of sleep problems that can be handled through therapy or  mechanical devices, these simple tests to improve our quality of life should be part of the standard MS treatment protocol.  

As always,
Laura/Lulu

[Steven Y Park, MD]

Quixotic1,

It definitely sound like you have a sleep problem, whether or not it's related to your MS. One of the hallmarks of MS is severe fatigue, so it's hard to determine what's causing what. My feeling is that no matter what other medical condition you have, there's a good chance that you may also have a sleep-breathing problem.

I've also mentioned in my articles variations of sleep apnea that can be just as devastating, namely upper airway resistance syndrome. With this condition, you don't have to snore or even have obvious breathing pauses. It causes deep-sleep instability, leading to chronic severe fatigue and a physiologic stress state that wreaks havoc on your body.

Laura,

I'm not going to recommend formal sleep studies for everyone with MS, but based on my poll and all your great feedback, I'm beginning to wonder if I should change my position on this.

[Lulu54]

Dr. Park is the author of a book published this fall.  It is available in hardcover (I don't know if a paperback version is planned) and has gathered some prestigious reviewers' positive comments on his different approach to sleep.  If you are interested, the book is titled

Sleep Interrupted: A physician reveals the #1 reason why so many of us are sick and tired

You may want to see if your local library has a copy to read or perhaps order it online if the topic interests you.

As always,
Lu

[Steven Y Park, MD]

Thanks for the plug, Lu.

My book is available directly from the publisher at http://www.sleepinterrupted.com

It's also on Amazon, but they're having problems keeping enough books in stock. You can place an order on Amazon, but it may take a few more days to ship.

[Steven Y Park, MD]

I happened to come across this article on MS and sleep disorders. A good overview.

http://www.*************.com/multiple-sclerosis/c/6639/33941/multiple

[Quixotic1]

Our censor bleeped the site.  Would you tell us what it is without the address?

And thanks for your answer.  I'll ask about it.

Quix

[Quixotic1]

Perhaps there are characteristics of MS that would trigger an automatic recommendation for a sleep study such as fatigue and cognitive dysfunction, or restless sleep, or snoring or a change in sleep habits.

As you reconsider your feelings about the prevalence of sleep disorders in MS would you add these thoughts?  It is something we could share with all the members as they join the forum.

Also a general Health Page on Sleep and MS could link this discussion and also your book.  It would be an invaluable resource.

Lulu - might this be a task you would be interested in?  I would be glad to load it if you would write it.

Quix

[Steven Y Park, MD]

I didn't realize it lead to a competitor's site. If you Google obstructive sleep apnea multiple sclerosis, you'll find and article called Sleep disorders in multiple sclerosis.

[Lulu54]

This is a bump for this fine thread that Dr. Park started - I want to make sure all of you see the response he has written about sleep and MS.  

Q- I'll sleep on it and get back to you with an answer!


As always,
Laura/Lulu

[Lulu54]

If you put in "health" and "central" as one word into Dr. Park's reference you can pull up the work he was talking about  

[fortywhat2]

Just to comment on the sleep study.  My primary ordered one due to continued fatigue.  I already had the dx's of MS, fibro, and osteoarthritis, but he didn't feel those were the cause.  I am overweight also.  I have "mild" apnea and sleep with O2 now.  He felt it would be less cumbersome than a bi-pap machine and would be enough because the apnea is mild.  It helps if I don't get tangled in the line :)
Debbie
~live as if all your dreams came true~

[Karen99]

In my case,  I believe that having my nervous system hyper-charged due to unrelenting stress, along with other factors (environmental)  caused MS to rear it's ugly head.  Looking back, I had "restless leg syndrome" then insomnia with frequent wakening and having great difficulty falling asleep for a couple of years.  No sleeping problems before this.  

Now......I fall asleep fast into a nearly unconscious state.  BTW, dentists have told me that I have a very small mouth, but there is no crowding because I was shorted 4 teeth that never came in :-)  

My brilliant neurologist recently moved from the LA area to Kentucky to "retire" from an 80 hour week to 40 hours a week.  He almost always ordered sleep studies for his MS patients.  It's been difficult to replace him.  :-(

[Octarine]

I don't have "known" MS (currently "under evaluation") and missed this discussion, but have one issue to add that relates to ENT and sleep disturbance.

Lately I wake up regularly because of coughing.  I don't have a cold or allergies, but I get a bad tickle in my throat only on the left side, and sleeping on my right side helps.  I think it's from saliva.  The left side is also the side where food gets stuck or pills "miss" being swallowed, and if food goes up my nose, it's on the left as well.  A swallow study said I was fine, but the speech/swallow therapist gave me recommendations that help with food and medications.

Anyway, knowing that swallowing problems are fairly common in "known" MS patients, I'm curious if this night coughing is a pattern among your patients with MS -- and what you recommend for it?

[Steven Y Park, MD]

Chronic cough can be from a number of different reasons, including allergies, post-nasal drip, and infections, but acid reflux is the #1 reason by far. Stomach juices can come up (due to various reasons) and irritates the throat area (especially the gravity dependent side), giving you chronic cough, hoarseness, post-nasal drip, mucous, throat clearing, lump sensation, tightening, difficulty swallowing, or burning. One thing to try is to avoid eating late (about 3-4 hours of bed time).

I wonder how many people with MS have the above symptoms that I describe related to throat reflux?

[sllowe]

Uh, can you re-ask the question ref. throat reflux?

I looked for it, but didn't see it specifically.....

If anyone else sees it here, post it here....

thanks

[sllowe]

Excellent.

I have a cough due to phlem.  I clear my throat often.  I have a tightening sensation in my throat (but not always). Have had the lump senstation too. You take BCBSNJ? ha/ha

-shell (dx'd 07)

[GrannyJo6]

How fascinating! I think I have always slept on my side with the covers all tucked up under my chin. My main problem with sleep is night terrors! Usually 1 - 11/2 hrs after falling asleep. My poor husband has put up with the ear splitting screams for almost 40 yrs now! Not every night thankfully but sometimes in cycles. I know certain meds caused what I call "epic" dreams but am no longer on those. Is there any correlation between dreams, nightmares, etc. and sleep breathing patterns? Makes me wonder!

[Lulu54]

I was wandering back through some of Dr. Park's information and came across this wonderful discussion.

Dr Park, I just completed my sleep study today - results aren't in but the tech did tell me I have apnea - I figure it is a good time to ask if anyone else has undergone a sleep study since we kicked the idea around back in February? And if so, what were the results?

tired, but still awake,
Laura

[student01]

I have a difficult time staying asleep at night I start on my back and switch from side to side thru the night because of spasms and numbness. I also have to get up 2-3 times a night to go to the bathroom.

[Tammy826]

bumping this thread....how informative ...wow!