Survey on EMS and Sleep

Question 1: Do you have trouble falling asleep?

Never or Seldom:

Question 2: Do you have trouble staying asleep?

Never or Seldom:

Question 3: How many hours of sleep, on average, do you get each night?

***denotes an answer cited most frequently (several tied)

0-12 hours - "I don't know how to answer this. My sleep varies from none all the way up to 12 hours. The long periods of sleep are due to heavily medicating myself." - 1 person or 3% of respondents
3-4 hours on a good night - 1 person or 3% of respondents
3-5 hours most nights; others 9-12 but am awake off and on - 1 person or 3% of respondents
4 hours - 2 persons or 6% of respondents
4 or 5 hours, but some nights none ("That way I can move in the morning.") - 1 person or 3% of respondents
4-5 hours - 1 person or 3% of respondents
4.5 hours ( 4 1/2 hours) - 1 person or 3% of respondents
4-8 hours "depending on whether or not I've been able to take medication and other factors" - 2 persons or 6% of respondents; 2nd person wrote "Lately, 8 hours; has varied from 4-8 over the years."
4-6 hours ("Probably 4-6; not much with interruptions") - 1 person or 3% of respondents
5 hours - 1 person or 3% of respondents
5-6 hours - 1 person or 3% of respondents
5-12 hours - "Recently, following surgeries about 10 and weekends about 12, but prior to that about 7 would do."
- 1 person or 3% of respondents
6 hours at most - 1 person or 3% of respondents
6-7 hours*** - 3 persons or 10% of respondents
7 hours - 2 persons or 6% of respondents
7-8 hours*** - 3 persons or 10% of respondents
Between 7 and 9.5 hours; "more when not working, less when working" - 1 person or 3% of respondents
8 hours*** - 3 persons or 10% of respondents
8-9 hours - 2 persons of 6% of respondents; one person wrote, "8-9 hours interrupted sleep"
10 hours - 2 persons or 6% of respondents

Comments: I was quite surprised to find that so many are getting by on so little sleep. I was also somewhat surprised at the range of answers. Some persons on some nights get no sleep and only sleep when they can take medication enough to put them out, it seems. Of interest, also, is the fact that several persons commented they get little or almost no sleep unless they can take a sleeping medication; it appears that a few persons are only allowed by their doctors to use sleeping medication several nights a week - or the people only take medication several nights a week. In some cases, it seems to me, there may be persons who sleep very little but don't seem to feel sleepy the next day, regardless, just tired. And in some cases, I am convinced, people are not using sleeping medications because of fears of becoming addicted or developing tolerance to medications, so they have decided to use nothing or to seldom use a sleeping medication.

Question 4: Do you feel rested during the day or sleepy? or does the way you feel vary from day to day?

Feel rested most days:

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Other Responses not Included Among Original Choices:

Lastly, I can't overlook the real possibility that most of the people who sleep the least well now might have been persons who took LT because they were poor sleepers pre-EMS. I also think many others who do get more sleep now took LT for sleeping problems and are now using sleep medications.

Question 5: Do you nap in the daytime?

Never or Seldom:

Question 6: Do you have any diagnosed sleeping disorders, such as sleep apnea, restless legs syndrome, or other medical conditions that affect your ability to sleep? If yes, please list them.

Note: More than several persons pointed out that EMS itself is a medical diagnosis that affects their ability to sleep. So, let us agree that EMS is a "granted" diagnosis that can adversely affect sleep. I don't believe it adversely affects sleep in all persons with an EMS diagnosis, however.

YES: 15 persons or 48% of respondents
NO: 13 persons or 42% of respondents
Other Responses: 3 persons or 10% of respondents replied "No" but went on to list medical conditions that adversely affect their sleep. I interpreted this to mean that two persons may have misunderstood the question and probably should have answered "yes"; or that, as the other person pointed out, none of the conditions that person listed had been physician-diagnosed but were self-evident to the person as conditions adversely affecting sleep. At any rate, 3 persons answered "No" but listed conditions while 13 persons answered "No" and listed no conditions.


***Sleep Disorders and Medical Conditions/Diagnoses Listed by 18 persons: 58% of respondents***

Note: Disorders and medical conditions affecting 3 or more persons appear in bold print. For this survey TMJ and TMD (and teeth clenching) will be counted as the same since they are in the same family.

Sleep disorder related to EMS
Restless Legs Syndrome; depression; and fibromyalgia (aching shoulders etc.)
Restless Legs Syndrome; nasal allergies; chronic anxiety; and EMS pain from neuropathy or other damage in legs, hips and rib area
Allergies/Sinus(breathing problems); TMD disorder (clenching); anxiety/panic disorder; severe GERD (acid reflux disease); and fibromyalgia secondary to EMS
Depression; EMS; TMJ
Allergies; asthma; depression
EMS related sleep problems
Panic/anxiety; neuropathy; plantar fasciitis; and temperature fluctuations
Restless Legs Syndrome
Restless Legs Syndrome
None physician-diagnosed: frequent trips to the bathroom; difficulty breathing lying down; and restless legs
Restless legs and fibromyalgia
Teeth clenching; allergies and sinus problems; depression; nocturnal eating (aka night eating, sleep eating, etc.)
Sleep apnea with maybe Restless Legs Syndrome - will be going to sleep clinic in near future for an E-Pac mask
TMJ
Anxiety; sinus and allergies
EMS and Chronic Fatigue (I interpreted this to mean a diagnosis of Chronic Fatigue Syndrome)
Phase delay disorder

Comment: Restless Legs Syndrome is the most-mentioned disorder adversely affecting sleep among those with EMS. It occurs oftener than in the general population. 7 persons mentioned it here, or 23% of respondents. Other conditions cited by at least 3 persons are Fibromyalgia, Allergies, Depression, Anxiety, and TMJ or TMD/clenching disorders, and Sinus.

Question 7: Do you require one or more medications to help you sleep?

Never: 6 persons or 19% of respondents
Seldom (several times a month or fewer): 5 persons or 16% of respondents
Frequently (2x or more a week): 2 persons or 6% of respondents
Nightly: 16 persons or 52% of respondents
Other Responses: (a) 1 person replied "Nightly until recently when taken off the meds, but I could use them again."
(b) 1 person who said they need meds "nightly but am only allowed to use 3 times a week to avoid tolerance." Total of 2 persons with similar responses or 6% of respondents.

Comments: Two (2) persons seem to be saying they need medications nightly but their doctors either limit the amounts of medication to avoid tolerance or have withdrawn them altogether. If these two were counted in those who need meds nightly to get their best sleep, that total would rise to 18 persons or 58% of respondents.Obviously, the majority of persons use one or more nightly medications to assist in sleeping. And if you add in the two people who use medication 2 or more times a week to sleep, the total would be 20 persons or 65% of respondents. I propose stating that basically the respondents fall into two categories: (a) those who use meds nightly; or used to until recently but feel they need them nightly; and those who use meds frequently vs. (b) those who never use meds, or use them seldom. Looked at that way, 65% say they require medication or would do better with nightly medication and 35%, probably for a variety of reasons ranging from lack of need to not wanting to use medications, don't use medication at all or seldom use any.

Checking the amount of sleep that persons who answered they never use sleep medications get a night, I found that answers varied. However, in order they were: 4 hours; 4.5 hours; 4-5 hours; 6-7 hours; 7 hours (prior to recent health problems when it's been variable); and 7-8 hours. I have to wonder whether people getting 4-5 hours of sleep a night would fare better if their doctors would prescribe something for them to use or if the people (if they don't want to use medications) would do better if they'd consider using something. If you factor in the 5 persons who seldom use sleep medications, you get these totals for their nightly average sleep: 4-5 hours or sometimes none; 4-6 hours; 6-7 hours; 7 hours; and 8 hours "recently." In all, adding the never and seldom persons together, there are 11 people who don't use sleeping medications very much or what amounts to 35% of total respondents.

Surprisingly, the two (2) persons writing "frequently" gave these total hours: 3-4 hours; 5-6 hours. That's not a lot of sleep.

Sleep totals for those answering nightly ranged from 3-5 hours to 10 hours (with one person reporting an occasional 12 hours of sleep). Although 3 or 4 persons only seem to get 5 hours or less of sleep some nights or all nights, most people in this category are getting 6-10 hours of sleep most nights with an average of 7-8 hours of sleep reported for the majority.

Question 8: What is the most helpful medication (or medications) for sleep you have found, if you use medications? If you don't use medications, please leave this question blank.

Note: Several persons who indicated using medications at least on a "seldom" basis did not name the medication(s) used.

Note #2: Medications in bold indicate they are used by at least 3 persons.


Dalmane first, then Benadryl (generic for Dalmane is Flurazepam)
Neurontin 300 mg.
Flexeril usually 10 mg. nightly and occasionally 20 mg. (generic for Flexeril is Cyclobenzaprine)
Xanax; Klonopin (generic Clonazepam); Neurontin; and Valerian Root
Ativan (generic Lorazepam); Klonopin - unable to tolerate SSRI's due to cardiac reactions
Trazodone; Topamax
Resperdal (generic Risperidone); Prozac low dose
Trazodone 50 mg. 1-2 tabs nightly one hour before bedtime
Neurontin; Trazodone
Previously Xanax until last few months
Neurontin 300 mg. x 3; Serzone 200 mg. x 2
Prosom (generic Estazolam)
Ativan
Benadryl
Tylenol PM; 1/2 tablet Soma; Muscle Relaxant
Valium (generic Diazepam)
Ambien; Codeine
Benadryl, over the counter; Cyclobenzaprine (generic for Flexeril), a prescription muscle relaxant
Ambien; Klonopin
Klonopin in addition to Ambien; also, Tylenol PM has helped; since I have sinus problems, I usually add Coricidin HBP (for high blood pressure)
Singulair; Rhinocort; and various asthma medications
Temazepam (generic for Restoril); Diazepam (generic for Valium)
Brandy - a little brandy can sometimes take the edge off muscle pain and tightness

Question 9: Do you sleep better now, worse now, or about the same as you did in the first years following your EMS diagnosis?

Better than in the early years: 11 persons or 35% of respondents
About the same now: 4 persons or 13% of respondents
Worse now than in the early years: 15 persons or 48% of respondents
Other Response: "N/A - diagnosed less than 2 months prior to this survey" - 1 person or 3% of respondents

Comments: Some of the people's comments are interesting: (1) "much worse" (2) "Better because pain is under better control now" (3) "Better now because of the medications to help me sleep. I wish that my physicians would have prescribed these medications in the early days, but they absolutely refused to do so." (4) "Better now..... has varied greatly over the years..... worse in the first years.... better more recently"

The person diagnosed a few months ago used L-tryptophan, not 5-HTP.

Well, it's said things are always changing. I guess it should not come as a surprise that most people either sleep better or sleep worse and only 4 persons say they sleep about the same as in the early years of EMS. Of the 4 persons saying they sleep the same now, the amounts of sleep listed are: 4-8 hours; 5-6 hours; 6-7 hours; and 4 1/2 hours). So those four people are not getting what is considered a good night's sleep, at least not every night.

Question 10: What is your age and gender? (optional)

Four Male Respondents: Ages: 46, 55, 57, and 64

Average Age of Male Respondents: 55.5 years (all ages added and total divided by number of respondents)
Median Age of Male Respondents: 56 years (the age in the middle - half above and half below - Note that the median age is not an age listed for any of the respondents)
Range from Youngest to Oldest of Male Respondents: 18 years (separating youngest from oldest respondent)
Mode: Not Applicable since no ages occur more than once. Mode is the age that occurs most frequently.


Twenty-Seven Female Respondents:

Ages: 41, 42, 50, 50, 50, 51, 51, 52, 52, 52, 53, 54, 54, 55, 56, 56, 57, 57, 57, 57, 60, 60, 63, 63, 67, 74, 75

Average Age of Female Respondents: 55.8 years
Median Age of Female Respondents: 55 years
Range from Youngest to Oldest of Female Respondents: 34 years
Mode: 57 years (There were four persons listing age 57, the most of any age.)


Comments: It's difficult to get persons with EMS who are the youngest and oldest to participate in surveys and that includes online surveys. Reasons younger persons with EMS do not participate include the fact there are fewer persons with EMS who are now (after nearly 15 years) below age 45 years of age. Also, it's hard to find the younger ones with EMS because they are fewer in number. Often, also, if contacted, they don't take the time or are otherwise unwilling to participate in surveys of this type. I can only guess at the reasons for that, so will not speculate here.

I know more people who were nearing age 40 and in their early 50s when they got sick, and it is this segment of the EMS population who are most likely to respond to requests for information. Older people (age 70 and older) with EMS do not use the Internet as much or as well (generally speaking).It's hard to find many persons with EMS age 70 or above who are using the Internet. They tend, if they do use a computer, to not join EMS support and information groups, use the Internet less frequently for information, and may be less equipped for various reasons to rely upon Internet communications.

I would be remiss, also, if I did not point out that many persons with EMS are unable to use computers due to their disability and the effects of the disease on their hands, arms, etc. Some are fortunate to have a spouse who keeps up with what is going on for them. And I would also be greatly remiss if I failed to say that many with EMS are unable to afford to purchase personal computers and Internet access.

Question 11: Please list methods, treatments, etc., that help you sleep other than the medications already given. (optional question)

Making myself be quiet in advance of bedtime; a nice warm shower to relax; avoid staying in bed to force sleep when it won't come - get up and read or watch a home garden show, etc., and then sleep usually; warm cup of tea - something warm in stomach, but not full; tiny portion of protein such as skim milk or cold broiled chicken or cheese - cannot sleep on full or empty stomach.
Deep slow breathing at bedtime; chi gung exercise; holding a purring cat; watching something mindless on TV; listening to Mozart; reading a good book; taking a warm bath before bed.
A bowl of cereal with milk sometimes; cool or cold bedroom.
White sound; cool room; small snacks of carbos; mind games; avoiding caffeine and chocolate past noon; adjustable bed; raised head; slow breathing; mental relaxation; prayer.
Relaxation tapes played at bedtime; cool bedroom and 50% humidity maintained; dental device for TMD; good allergy control - Mucinex helps and steroid nasal spray; not eating for 4-6 hours before bedtime - must have an empty stomach due to acid reflux; avoiding anything unpleasant in the evenings, such as phone calls that wear me out or anything aggravating.
Relaxation therapy; electric blanket.
Music; reading; playing games on computer; cool bedroom; keeping depression in check.
Ear plugs to drown out noise; lavender scented tealights (small, self-contained candle); prayer; chilly temps in bedroom.
Avoiding anything unpleasant in the evenings.
Hot bath if cold; hot tea; massage; shot of whiskey with cola or pass on those listed to here (to this point) and take 1/2 Xanax tablet (when I used to have them prescribed); otherwise, up and down all night, sleeping only when exhausted.
Warm bath; hot tub; cool room.
Listening to books on tape till I fall asleep is helpful.
Calm, quiet at bedtime; I also read in bed usually and that helps me; sometimes use relaxation exercises.
No caffeine after 12 p.m.
Custom night guard for clenching; anti-depressant for depression; meds for allergies such as prescription nasal sprays and Zyrtec.
Avoiding all things that aggravate me over which I have control.
Reading meditative matter; relaxation exercises.
Temper Pedic mattress; regular osteopathic treatments (cranial sacral therapy); regular swimming; heating pad.

Sources:

Entrez-PubMed Abstracts that mention Sleep and EMS:

a) Pain, fatigue, and sleep in eosinophilia-myalgia syndrome: relationship to neuropsychological performance.

b) Eosinophilia-myalgia syndrome: selective cognitive impairment, longitudinal effects, and neuroimaging findings.

c) [The tryptophan-associated eosinophilia-myalgia syndrome. A clinical follow-up of 8 patients]

d) [Eosinophilia myalgia syndrome in administration of L-tryptophan]