Chronic Fatigue (CFS) Syndrome and Fibromyalgia (FM)

Is sleep a problem for these illnesses? Both CFS(or CFIDS: chronic fatigue and immune dysfunction syndrome) and FM are frequently characterized by poor sleep quality and/or bouts of insomnia. Their causes are unknown, yet may coexist or overlap with sleep disorders (technically called comorbidity). People may wake up feeling extremely stiff and sore each morning for years on end, literally feeling like they've been hit by a truck. Sufferers may sleep for most of the day for many days in a row; they are also frequently plagued by "out-of-whack" circadian rhythm that make it easier to take an Algebra test at midnight and to wake up at 2 in the afternoon.Some researchers believe that there is a genetic predisposition for both of these. Some think that they are related, or in a similar "family" of disorders/ diseases. They are seen as either neurological or immunological or endocrine or ... the list goes on, for neither cause no cure is known for either one. But one thing is certain, they both cause MAJOR sleep problems. In the online support group subscribed to by one parent of a youth with CFS and FM (Emilie's mother), she found when she sorted for those discussing sleep studies, sleep difficulties, or medications for sleep, that she soon had an archive of 1800 + emails from 1998 and 1999 Alone! (More than 1/5 of the emails for that 19 month period on a support group list that is as much social as disease-specific)!

CFS diagnosis is based on the unexplained, persistent, or relapsing chronic fatigue that is not the result of ongoing exertion, is not substantially alleviated by rest, and results in substantial reduction in previous levels of [occupational, educational, social, and/or personal] activities and the concurrent occurrence of four or more of eight miscellaneous recurrent symptoms, one of which is unrefreshing sleep.(1) Go to www.cfids.org

Fibromyalgia diagnosis is based on a history of widespread pain as well as pain in at least 11 of18 tender points upon digital palpation with a certain pressure. (2)

Dr. David Nye a Wisconsin physician very experienced with fibromyalgia patients, writes ,

"There is some evidence that fibromyalgia may be due to an abnormality of deep sleep. Abnormal brain waveforms have been found in deep sleep in many patients with fibromyalgia. Fibromyalgia-like symptoms can be produced in normal volunteers by depriving them of deep sleep for a few days. Low levels of somatostatin, a hormone important in maintaining good muscle and other soft tissue health, have been found in patients with fibromyalgia. This hormone is produced almost exclusively in deep sleep, and it's production is increased by exercise . . . . Successful treatment of fibromyalgia requires:

1. Regular sleep hours and an adequate amount of sleep
2. Medication to improve deep sleep.
3. Daily gentle aerobic exercise.
4. Avoidance of physical and emotional stress.
5. Treatment of any coexisting sleep disorders. If any of these five are omitted, significant improvement is unlikely. Moldofsky et al. speculated that fibromyalgia may be related to abnormal and non-restorative deep sleep, perhaps due to abnormalities of serotonin metabolism (Moldofsky 1975). Serotonin is important in deep sleep and central and peripheral pain mechanisms (Chase 1973). Amitriptyline, the most useful medication for treating fibromyalgia, blocks serotonin reuptake and increases deep sleep (Baldessarini 1985)""(3)

Dr.Anthony L. Komaroff, MD is "Chief of the Division of General Medicine and Primary Care at Brigham and Women's Hospital and Professor of Medicine at Harvard Medical School. He is an active investigator, clinician and teacher. Dr. Komaroff leads a research group that has been studying CFS since 1985. He has published over 60 articles or book chapters on CFS, and was the Director of an NIH-funded CFS Cooperative Research Center. His research has addressed a broad set of questions about CFS: Its prevalence and causes, and the roles of various infectious agents, the immune system and the brain," and more. (4)

As a member of the Chronic Fatigue Syndrome Coordinating Committee which advises the U.S. Surgeon General and the Dept. of Health and Human Services about CFS research needs and trends, Dr. Komaroff has been at three meetings where Emilie Sutterlin gave her public testimony on what it was like to be a teenager with Chronic Fatigue Syndrome, (5)

"When I ask for an alternative or reduced p.e. schedule, ask to postpone a test, or turn in homework late, It is not to try to get out of anything. I would Love to be able to stay up past 7:30 p.m. working on homework and still be able to wake up for school by 8:30 the next day. Unfortunately, my body knows that 99 out of 100 times, that just can't happen. On nights when I have insomnia, I can try relaxation, I can try doing homework as long as I'm awake, but I can't force myself back to sleep and then make it up for school the next morning. I would love to get rid of all episodes of what we call "Brain fog" --then study those vocabulary words that I know will come in handy not only for my Odyssey test, but also for the SAT in a few years. (Emilie's Public testimony before the DHHS committee; presented Oct. 22, 1997)

I love to be invited to parties and social activities, even if I have to decline. It is extremely hard for me to make commitments, because I don't know from day to day, hour to hour, how I will feel. I am not allowed to go to sleep over parties because I need at least 10-12 hours of sleep each night. But often even after 15 or 16 hours of sleep I wake up feeling very tired and with a very sore throat. (Emilie's Public testimony presented before the DHHS committee; presented May 1997)

"I have gone to several different types of doctors (including one infection specialist, three other allergists, a heart doctor, and a sleep doctor) to try to figure out what was and is wrong. Many doctors don't know anything about CFS. Of those who do, most of them don't know enough or even know incorrectly. The doctors need to be educated about this disease and they need to be told what information that has been said is wrong, or not fully true." Apr.1996

So, despite his busy schedule, Dr. Komaroff readily agreed when Emilie asked if he would be able to respond to an e-mail interview about CFS and sleep, and generously shared his insights . (6)

Emilie's Q. : Which sleep disorders do you find most commonly coexist with CFS?

Dr. Komaroff: We have not done a formal study of this, so I cannot say.

Q. How often do sleep disorders coexist with CFS?

Dr. K. "Ditto number 1." [no formal study yet]

Q. : Do you think sleep disorders can trigger CFS or that CFS can lead to sleep disorders?

Dr. K.: I think CFS can trigger sleep disorders. I am not aware of a case where treating a sleep disorder has cured CFS.

Q. Many outsiders associate "chronic fatigue" with sleeping a lot. When I first got CFS, I slept a lot. As my CFS progressed, however, I frequently experienced insomnia. I still go back and forth between these two. If CFS patients experience fatigue, why do some (or many?) have insomnia?

Dr. K. No one knows. Many of the symptoms of CFS are likely to be caused by subtle abnormalities in the brain. Altered sleep patterns may be part of that.

Q. How else does CFS affect patients' sleep? Why might CFS patients awake feeling unrefreshed after sleep, even when they've slept more than 12 or even 15 hours?

A.The quality of sleep, such as the amount of time spent in the deepest part of sleep, may be diminished.

Q. If you know someone has a diagnosed sleep disorder (such as Periodic Limb Movement), can he or she still be diagnosed with CFS if they have the other symptoms?

A. Before making the diagnosis of CFS, one must be sure that no sleep disorders are present, since they can surely cause fatigue and some of the other symptoms of CFS. However, in my opinion, if a sleep disorder is properly treated and goes away with treatment, but the symptoms of CFS remain, then it is acceptable to make the diagnosis of CFS."

Other specialists in fibromyalgia information also link the mysterious syndrome to basic sleep problems.

"You should suspect fibromyalgia in a child who sleeps restlessly, kicks or twitches during sleep, and has a difficult time getting out of bed in the morning. [...] Insomnia coupled with pains or aches is a trouble signal and should not be ignored, particularly if one of the child's parents has FM.. Sometimes an alert teacher is the first to notice a problem. [...]Children with fibromyalgia often have trouble in school. A considerable amount of schoolwork requires memorization. The cognitive difficulties that often accompany FM may make this difficult, if not impossible. ...

Children who squirm and fidget in class may be trying to keep themselves from falling asleep. They may also find it painful to sit in one place for long periods of time...

http://www.mwilliamson.com/children.htm

Some doctors put children with FM on a very small dose of a tricyclic agent or muscle relaxant. Others prescribe Benadryl at bedtime for sleep. A child who learns good nutritional habits early in life, grows accustomed to going to bed at the same time every night, and is encouraged to take part in a suitable exercise program will be well equipped to avoid FM flareups throughout life. " (7)

Kim Jones, R.N., who teaches in an Oregon school of nursing, points to stage 4, deep sleep, as being key to the problem for FM, because of growth hormone production. For sleep hygiene for people with FM, she encourages not only avoidance of caffeine, alcohol, and tobacco, but also of many medications which contain alcohol or stimulants as an ingredient. She encourages avoiding stretching which reaches above one's head, but doing stretching and muscle strengthening activities and going to bed at the same time each nght. "Shift work is one of the worst jobs for anyone with FM." Medications which help are usually those which try to increase stage 3 nd 4 sleep and dreaming. (8)

As someone with both CFS and FM, Emilie can tell you. SLEEP is very important. This web site topic was chosen on a fall 1998 afternoon when sleep was just what the doctor ordered for not being able to think straight any more. This web site will hopefully encourage you, too, to make SLEEP and good Sleep Hygiene a top priority in a healthy lifestyle.

(1) According to the CFS case definition published in the 12/15/94 issue of the Annals of Internal Medicine. As quoted in: "Introducing CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome)." The CFIDS Association of America. Charlotte, NC: 1996. For more information: 1-800-44-CFIDS. http://www.cfids.org

(2) American College of Rheumatology's criteria for classifying fibromyalgia, synthesized and repeated in many publications and handouts on Fibromyalgia. For more info., go to"Fibromyalgia & Chronic Myofascial Pain Syndrome (FMS & CMPS)"by Devin Starlanyl. URL as of Aug. 13, 1999: http://www.sover.net/~devstar/index.htm

(4)Komaroff, Anthony. bio. info. from AACFS page. http://weber.u.washington.edu/~dedra/cvs.shtml Officers and Board Members of the A.A.C.F.S.

(3) Permission to quote and to link to Dr. Nye's information linking FM and sleep problems granted in email from Bill Jackson, cfsdays@oz.sunflower.org by e-mail communication, Aug. 14, 1999.

http://www.sunflower.org/~cfsdays/nye-pt.htm

about Fibromyalgia: a guide for patients,

http://www.sunflower.org/~cfsdays/nye.htm by Dr. Nye http://www.sunflower.org/~cfsdays/fmsfiles.htm

(5) Public domain since given as official meeting public testimony on these occasions of open meetings,, but also Emilie herself's original testimonies/ statements, never DREAMING that she'd be doing web page on Sleep someday

(6) Komaroff, Anthony., Interview by e-mail, to Emilie Sutterlin. Apr. 24, 1999.

(7)Excerpted from Fibromyalgia: A Comprehensive Approach by Miryam Williamson Copyright 1996. [Online date 1997, URL checked as of Aug. 12, 1999. "Permission is granted to download, print, copy, and distribute, but not to sell" from web site, but also, Miryam Ehrlich Williamson Permission granted in email, July 31, 1999.

Ms. Williamson: http://www.mwilliamson.com

Her tips on FM and sleep are at URL: http://www.mwilliamson.com/5-htp.htm

http://www.mwilliamson.com/children.htm

French translation of this page.Ms. Williamson and Ms. Rochette: http://www.geocities.com/Paris/Maison/2979/enfants.shtml

(8) Jones, Kim. "WebMD Chat Transcript: FMS: Improving Sleep," Apr. 21, 1999. transcribed by Web MD Staff. c. 1999. URL avail. as of Aug. 1, 1999. http://my.webmd.com/member/341509

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