Improving Sleep Quality Despite
Fibromyalgia or Chronic Fatigue Syndrome
This is the text of. a talk that Dr.
Podell gave to the Connecticut Fibromyalgia & Chronic Fatigue Syndrome
Association of Connecticut in April, 2003.
First, I want to thank Michelle Lapuk the directors of The Connecticut
CFIDS & FM Association for inviting me to speak. I am also grateful
that Dr. Garcia, Health Commissioner of the State of Connecticut has
joined us today, to show his support for the cause you represent.
Most important I want to thank you for being here. I have worked with
CFS since the mid 1980s and with FMS since the early 1990s. I
understand how devastating can be the experience of feeling that your
life has been put on hold by a mysterious ailment that even now, too
often, physicians, families and friends may believe is �all in your
head�. One may respond with anger, frustration, perhaps moving on to
feeling hopeless. That�s understandable, even normal, but as we all
know the physical and psychological affects of frustration not only
doesn�t help, but almost always makes things worse.
In part you are here today t to learn about better sleep; but you are
also here as an act of strengthening your own sense of feeling in
control, of being able to act effectively on your own behalf. I feel
privileged to be able to help you in this quest.
Our topic today is improving sleep, and the first thing I want to make
perfectly clear is that what we don�t know about this process is much
greater than what we do,. And while we are beginning to ask the right
questions, most of the answers we seek are not yet in hand.
For example, we know that both CFS and FMS by their very nature
prevent restorative sleep. This not only leaves us feeling tired, but
acts to worsen our illness in direct physical ways. For example, poor
sleep turns up the �volume knob on� on our central nervous system �s
pathways that transmit and augment perceptions of pain. But, we don�t
know why this happens, and there�s little research on this important
Another example: is the role of inflammation. One of the great
insights of recent medical research is that inflammatory reactions are
commonly present in conditions that we never imagined were
inflammatory. There is a degree of inflammation among most people with
CFS and FMS, although less severe and quite different from the
inflammation that�s found in �normal� infections or in autoimmune
conditions such as rheumatoid arthritis. Indeed poor sleep itself can
cause inflammation, as can hardening of the arteries (arteriorsclerosis)
and even psychological depression/, However, we don�t yet know what we
should do with this knowledge. Would suppressing inflammation help our
body heal, or are these inflammations part of the body�s self-defense?
Again, the research we need is not yet being done.
So, while we are waiting for more research and first rate controlled
studies, what practical approaches have the best promise of improving
your odds of improving how you feel and function, living with CFS/FMS?
The first part of my talk focuses on the broad principles that I and
other physicians who treat CFS and FMS believe we have learned by
listening to our patients and by sharing their experience of which
approaches have been more likely to help.
I want to emphasize that this kind of anecdotal trial and error wisdom
is not a perfect guides,. The recommendations they lead to will not be
the �right answer� for everyone,. Indeed, the main principles I have
learned are in some respects contrary to those that most doctors have
learned about how best to help sleep. That is because,/FMS/CFS are in
important respects different From the �usual run� of illness,
different enough so that the principles that make sense for most
The second section will introduce the concept of integrative or
functional medicine, adding holistic support for the body�s natural
healing systems. This is not a treatment for sleep per but an attempt
identify and correct obstacles to healing that arise as complications
of the illness. You can find out more about this on my website
DrPodell.org, especially in the subsection Titled 8 vicious cycles
that interrupt healing.
Third, we will review many of the medicine, herbs and nutrients that
potentially help sleep�both the common choices that are usually
prescribed for sleep, as well as several innovative therapies,
typically used for other purposes, that also have the potential for
helping better sleep.
The following conclusions or broad principles should be considered in
approaching Sleep Problems for people with FMS/CFS/
1. 1) Nearly all persons with FMS and/or CFS have non-refreshing,
non-restorative sleep. This occurs in almost circumstance: whether you
lie awake at night or sleep sleep all the way through; whether or not
you have a primary sleep disorder such as sleep apnea or periodic leg
movement disorder (PLMD); whether or not you are anxious or depressed;
no matter if your EEG tracing while asleep shows sleep architecture
2) In addition to non-restorative sleep that almost always present, a
substantial number of people with FMS and CFS also have a primary
sleep disorder. The data is especially strong for CFS, where somewhere
on the order of 10% of patients have a significant degree of sleep
apnea> On the order of 1-4% have a muscle twitching syndrome called
periodic leg movement disorder (PLMD)
A bed partner can suspect obstructive sleep apnea by noting snoring,
and/or repeated pauses in breathing of >10 seconds and/or snorting
and/or struggling for breath. Sleep apnea is most common among persons
who snore heavily, but can also occur among people who do not snore. A
bed partner might suspect PLMD after noting frequent small muscle
twitches, gross limb jerks or excessive tossing and turning. However,
even with a bed partner who stays up to observe for at least 30
minutes, we may still miss a substantial proportion of sleep apnea,
and perhaps a majority of PLMD.
Therefore, if affordable, every person with CFS?FMS and
non-restorative sleep should have an overnight sleep study. (Insurance
might require pre-authorization. Relevant CPT Codes: Sleep Disorder
(780.50) Sleep apnea (780.57), PLMD (780.56))
3) Even modest improvements in sleep quality can make a meaningful
difference in quality of life. This helps remove an important obstacle
4) Trial and Error is one of the best strategies�despite its
frustrations. Methods that help one person often fail for others. View
each treatment trial as an opportunity, and each treatment failure as
clearing the decks to make way for the next potential option. If you
keep trying, and don�t get discouraged, the odds are you�ll find one
or more medicines that can make a difference.
Many sleep medicines work within one to a few nights. Therefore, a
series of brief trials should be practical. Drop any medicine that
causes problems on night #1. Continue a non-disruptive medicines for a
fair-trial period of 4 days to four weeks.
5) Dumb Simple Common Sense Sleep Hygiene and Psychological Maneuvers
can make an important difference (See the Sleep Hygiene table below)
Don�t neglect these important issues even though they�re �low tech�.
6) Make staying asleep an interim goal on the way toward sleep that
refreshes. Restful restorative sleep is the goal, but, despite
sleeping through the night, many patients still wake feeling tired.
However, all else being equal, you�re better off waking tired after
sleeping through the night than waking tired after not sleeping
through the night.
7) Usual opinion is that we should use sleeping pills only as a last
resort and only occasionally and for short periods. However, since for
FMS/CFS bad sleep is chronic and harmful to your health, my judgment
is that often for FMS/CFS a different role makes better sense: If you
benefit, take sleep medicines regularly to support better sleep.
7) Usual opinion is that we should prefer non-addicting medicines,
especially those that improve slow-wave sleep and which also often
help fibromyalgia pain e.g. the tricyclic anti-depressants at low
doses (Elavil, doxepin, Pamelor), the tricyclic muscle relaxant
Flexeril, the anti-depressants trazadone and Serzone, the newer
anti-depressant Remeron, and the newer sleep medicines Ambien and
These medicines should still be first choice�when they work. However,
since many people with CFS/FMS are very sensitive to medicine side
effects, fairly often these medicines aren�t tolerated, or that they
don�t work So, other less standard sleep options are very often worth
8) Usual opinion is that we should avoid diazepam/Valium like
medicines except for occasional use because they are �habit-forming�,
tend to disrupt rather than improve the EEG pattern during sleep, and
because for some people over-time they tend to stop working. This is
all true. However, my experience and that of other specialists is that
a proportion of people with FMS/CFS do surprisingly well with this
class of medicines, even with long term use. So, don�t dismiss the
benzodiapine group automatically, as many physicians tend to do. Among
the benzodiazepines, many FMS/CFS specialists prefer Klonopin/clonazepam.
8) Usual opinion is that we should not combe different sleeping pills
to be taken at the same time. Again, the rule often makes sense, but
there are times when it may not, especially for people who tend to get
side-effects at standard dose levels of many medicines. Combining
several different types of medicines and/or herbs at low doses
sometimes adds effectiveness while minimizing drugs side effects.
One combination that�s sometimes useful is a low dose of a tricyclic
antidepressant plus the benzodiazepine, Klonopin. Another might be a
short acting sedative e.g. Sonata or Halcion along with a longer
acting medicine e.g. Ambien or trazadone. Another option: rotate
several different medicines, so you won�t get too used to any one.
(Caution: the more different medicines you take in a given day, the
more potential there is for drug interactions. Remind your doctor to
look up each interaction combination each time you add a new medicine.
Or get a PDR and look it up yourself. This can get complicated,
though. And, many, possibly most potential interactions have not been
If you take nutrients or herbs, some health food stores and pharmacies
have a computer data base on herb/nutrient/drug interactions.
Healthnotes is one company that supplies this service. For example
Willner Chemist, the sponsor of the Willner Window Radio show I
co-host on WOR radio in New York, has a computer with the Healthnotes
data base. (See Willner.com)
9) Many CFS/FMS patients react adversely to medicine doses that most
others would tolerate. If a medicine seems �too strong�, consider
trying it again at 10% to 25% of the previous dose. For example, the
usual dose of a tricyclic anti-depressant for sleep is 10-30 mg at
night (versus 75-150 mg when used for depression). However, the best
dose for �sensitive� people might be 1 or 2 mg instead. The tricyclic,
doxepin, comes as a liquid suspension, with a dropper bottle, so you
can titrate down to 1 mg doses. Flexeril, usually used at 10-20 mg,
sometimes does better at 1-2 mg.
(You can fold wax paper over the pill, smash it into powder, then
estimate the dose e.g. 10% of the powder made by the pill.)
10) Many medicines that are not normally used to help sleep may,
nevertheless, have sleep enhancing effects, at least for some persons
e.g. the anti-histamines Benadryl, Unasom Or they may help indirectly
such as by suppressing pain e.g. ibuprofen, Relafen, Ultram, Celebrex.
Also useful in some are medicines that are normally used for entirely
different purposes. For example: Zanaflex or Baclofen�which reduce
muscle spasm in multiple sclerosis medicine; Zofran�an anti-nausea
medicine; Neurontin or Gabatril�anti-seizure medicines; perhaps also
Dextrmethorphan�the �DM� cough medicine.
11) If you are also depressed or anxious or tend toward rapid, shallow
chest breathing (hyperventilation syndrome) then any form of
anti-depressant is likely to improve sleep after a month or so of
steady treatment. This will be true whether or not the medicine helps
or hurt sleep during the first days or week. Thus, antidepressants
such as Prozac or Wellbutrin, tend to over-stimulate during the first
days of treatment. They can worsen anxiety and insomnia, especially if
you take them later in the day. However, over several weeks as their
anti-depressant effect takes hold these medicine then act to improve
sleep and to lessen anxiety.
In contrast, sedating anti-depressants such as Elavil, Trazadone and
Remeron may help sleep within days, even at fairly low doses, long
before the 4 to 8 weeks it may take to have a direct affect on
depression. If you are not depressed, anxious or prone to disordered
breathing, then Elavil, etc. are still likely to help sleep, but
stimulating antidepressants like Prozac or Wellbutrin are not
likely to help, even after a month.
(Suspect depression if there is loss of enthusiasm; suspect anxiety if
you feel nervous or tense; suspect hyperventilation syndrome if you
feel dizzy while seated, light headed, brain fog, or if symptoms
worsen within seconds after rapid breathing or with exertion.).
12) Most FMS and CFS patients should ask their doctors to use lower
doses than usual, when they start treatment. That reduces the severity
of side effects and makes it more likely you�ll be able to build
toward effective doses. For example, start Prozac at 5 mg in the A.M.
instead of the standard initial dose of 5 mg.
Another option with stimulating medicines like Prozac is to
temporarily add a benzodiazepines such as Valium, Ativan, Xanax, or
Klonopin to be used intermittently as needed until your body becomes
accustomed to the new medicine, and the over-stimulation begins to
fade. Unless there is a personal or family history of drug abuse, the
risk of addiction or psychological dependence is minimal, since you
would only be using these tranquilizers for two or three weeks at
most, until the body gets used to the anti-depressants.
13) While controlled studies are limited some patients report benefit
from various �natural� or �alternative� vitamins or herbs can. These
are relatively safe and may be worth a try. But be wary of
interactions with drugs e.g. 5 hydroxy tryptophan should not be mixed
with Prozac or with St. John�s Wort.
A MORE GENERAL APPROACH FOR HOLISTIC SUPPORT OF THE BODY�S NATURAL
Until we find a �magic bullet� that specifically cures FMS/CFS
we may find important value in identifying and removing obstacles that
may block the body�s natural mechanisms for healing. We call this a
functional or integrative or holistic or complementary/alternative
Holistically oriented physicians believe that all the body�s mind and
body systems interact and communicate in a complex web of
interactions. Strengthening any part of our physiology, we hope, can
feed through and improve healing functions in other parts as well,
therefore, supporting healing overall.. I discuss this in further
detail on the FMS and CFS pages of our website (DrPodell.org)
For example, �adaptogenic� herbs such as Rhodiola, Cordyceps, Ginseng,
and Ashwaganda may improve the general ability to resist physical
stress. No formal studies of this approach have yet been reported for
CFS or FMS. However, anecdotal reports by clinicians have been
Other holistic approaches that may help: re-train slow, deep
diaphragmatic rhythmic breathing (which are abnormal and cause
symptoms in at least 50% of persons with severe CFS/FS); reverse the
increased loss of magnesium that typically occurs with CFS; supplement
anti-inflammatory omega-3 fatty acids/fish oils; improve digestive
function; improve liver detoxification function; improve the crucial
biochemical pathways of methylation�the folic acid/vitamin B 12, S-adenosyly
Methionine pathways; identify specific food sensitivities such as
gluten or sugar; optimize hormones such as thyroid, adrenal,
testosterone, growth hormone, and DHEA.
The following table provides an overview of the medicines that are
most commonly used and/or most often helpful for improving sleep among
people who suffer from FMS and/or CFS. Use this table to generate
ideas for potential treatments that you can discuss with your
Commonly Used Medicines for Sleep
Elavil, doxepin, nortiptyline/ Pamelor
long sedation; dry
mouth, rapid heart, difficulty urinating, weight gain, heart
arrhythmia, depression to manic phase
by 2D6 liver detox path e.g. cimetidine, quinidine, some SSRI�s.
Do not use with MAO inhibitors
for sleep maintenance, fibromyalgia; caution of heart arrhythmia
Trazadone (Desyrel), Serzone,
dry mouth, heart
arrhythmia, prolonged erection (priapism)
may help fms
Klonopin, Temazepam/ Restoril, lorazepam/ Ativan, Triazolam/
habituation, amnesia while taking it, respiratory depression
Different drugs of
this class interact adversely with specific SSRI anti-depressants
Can help PLMD,
duration of sedation varies. Don�t give if emphysema
mouth, urine obstruction
Zafeplon/ Sonata (short-acting)
May be habit
forming with high doses prolonged use
sedation, high blood pressure
modestly increases blood levels of Neurontin. Antacids reduce
migraine, fibromyalgia and as a mood stabilizer
Multiple Sclerosis Medicines
Low blood pressure, sedation. Liver function
May be useful for
fibromyalgia, migraine; obtain periodic liver tests
ibuprofen, Celebrex, Vioxx
bleed, allergic reaction, kidney problems, fluid retention
May help sleep by
reducing pain; a few benefit even if no pain
Herbal/Nutritionals that Might Help
0.5 mg to 6 mg
1 to 5 hours before sleep;
more likely to
help night owls, or elderly
helps sleep onset;
do not mix with SRRI anti-depressants or St. John�s Wort or MAO
Mediocre one used
for single nights, fairly effective at 300-600 mg at night over
Hopes, Lemon Balm,
passion flower, skullcap, calcium, magnesium, inositol
helpful; few good studies
as aroma therapy
PRINCIPLES OF SLEEP HYGIENE
Discuss whether medicines might be disrupting sleep e.g.
decongestants, diet pills, stimulating antidepressants. Also evening
caffeine or alcohol.
Keep sleep schedule regular. Shifting sleep time disrupts sleep.
Create a habit pattern of staging down activities throughout the
evening. This helps condition your body to �expect� to be able to
sleep. Consider turning the TV off early. Try music or dull reading.
Keep the bedroom dark and quiet and the mattress comfortable. Leave
marital conflicts outside.
Bed should be used only for sleep or sex. Move to chair or couch when
not engaged in either.
Clear your mind of the past day�s events and the next day�s worries
e.g. write down your regrets and plans, then lock them in a drawer so
you can go back to them tomorrow
Don�t exercise just before bedtime. Even relaxing meditation might
alert you too much for sleep.
Consider a hot bath in the early evening. Heat initially prompts
alertness; drowsiness then follows as your body temperature drops.
Take a modest carbohydrate snack or warm milk before sleep. This
promotes drowsiness for some
Use relaxation tapes, imagery, slow diaphragmatic breathing or
Use ear plugs if there�s too much noise, eye shades if there�s too
Use white noise e.g. a fan or calm music to soothe out and block
BEHAVIORAL TECHNIQUES FOR SLEEP
Sleep restriction/consolidation Restrict total time in bed to 4 hours
or less, whether you actually sleep or not. Over a few days you should
find yourself consolidating more sleep into the available time. As the
proportion of time sleeping increases extend the time allowed in bed.
Paradoxical Intention For some tying to stay up later may hasten sleep
Relaxation Skills Diaphragmatic breathing, visual imagery (e.g.
counting sheep) muscle relaxation
Cognitive Behavioral Therapy (CBT)
(See also various books under the name of Feeling Good, by David
Burns, M.D., a psychiatrist who has produced a workbook version of CBT
one can do on one�s own.) A form of brief psychotherapy that works to
improve coping skills e.g. not turning molehills into mountains.
Controlled studies show that persons with CFS/FMS who do several CBT
sessions do better 6 months compared to comparably ill persons who do
not. Also benefits rheumatoid arthritis and other
�non-controversially� physical ailments.