Medical Arts Center, 11 Overlook Rd., Suite 140, Summit, NJ 07901 Tel: 908-273-7770

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 topic.

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 others.

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 to
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 abnormalities.

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 to healing.

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 Sonata.

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 a try.

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 studied systematically.

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 HEALING SYSTEMS

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 approach.

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 encouraging.

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 physician.

Commonly Used Medicines for Sleep

Class	Medicine	Prominent Side Effects	Selected Drug Interactions	Comments
Tricyclic antidepressants	amitryptiline/ Elavil, doxepin, nortiptyline/ Pamelor	long sedation; dry mouth, rapid heart, difficulty urinating, weight gain, heart arrhythmia,   depression to manic phase	Drugs metabolized by 2D6 liver detox path e.g. cimetidine, quinidine, some SSRI’s. Do not use with MAO inhibitors	Especially useful for sleep maintenance, fibromyalgia; caution of heart arrhythmia
Anti-depressaants	Trazadone (Desyrel), Serzone, Remeron	dry mouth, heart arrhythmia, prolonged erection (priapism)	Digoxin, phenytoin	can help fibromyalgia
Muscle relaxer	cyclobenzaprine (Flexeril)	dry mouth, dizziness	like Tricyclics	may help fms
Benzodiazepines	Clonazepam/ Klonopin, Temazepam/ Restoril, lorazepam/ Ativan, Triazolam/ Halcion (short-acting)	Tolerance, 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
Sedating antihistamines	Benadryl, Unasom	sedation, drug mouth, urine obstruction	phenothiazines, MAO inhibitors	over-the- counter
Non-benzodiazepine hynpotics	Ambien/ zolpidem, Zafeplon/  Sonata (short-acting)	dizziness, amnesia, anxiety	Sertraline, rifampin, cimetidine	May be habit forming with high doses prolonged use
Anti-seizure Medicines	Neurontin/ gabapentin	Dizziness, sedation, high blood pressure	Cimetidine (Tagamet) modestly increases blood levels of Neurontin. Antacids reduce absorbption.	Probably for migraine, fibromyalgia and as a mood stabilizer
Multiple Sclerosis Medicines	Zanaflex (tizanidine)	Low blood pressure, sedation. Liver function abnormalities	Relatively minor	May be useful for fibromyalgia, migraine; obtain periodic liver tests
NSAIDs	Aspirin, ibuprofen, Celebrex, Vioxx	gastritis, G-I bleed, allergic reaction, kidney problems, fluid retention	Coumadin and others	May help sleep by reducing pain; a few benefit even if no pain

Herbal/Nutritionals that Might Help Sleep

Melatonin	0.5 mg to 6 mg 1 to 5 hours before sleep; more likely to help night owls, or elderly
5-hydroxy- tryptophan	helps sleep onset; do not mix with SRRI anti-depressants or St. John’s Wort or MAO inhibitor antidepressants
Valerian Root	Mediocre one used for single nights, fairly effective at 300-600 mg at night over 2-3 weeks
Hopes, Lemon Balm, passion flower, skullcap, calcium, magnesium, inositol	anecdotally helpful; few good studies
lavender extract as aroma therapy	relaxes, probably beneficial

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 meditation.

Use ear plugs if there’s too much noise, eye shades if there’s too much light.

Use white noise e.g. a fan or calm music to soothe out and block unwanted sounds.

BEHAVIORAL TECHNIQUES FOR SLEEP
Technique Comment
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.