Every fibromyalgia patient should have a sleep study. Here's why

Discussion in 'Fibromyalgia Main Forum' started by abbylee, Sep 28, 2005.

  1. abbylee

    abbylee New Member

    CAAnnieB - thank you for "coming on board" with me about sleep studies. Below is some information about sleep stages and sleep disorders. I hope you all find it useful.

    Finding out what your sleep disorder is and getting proper treatment can mean the difference in severe pain and less pain.

    Below is some information about sleep stages and sleep disorders.

    Sleep Stages

    Research has identified five distinct stages of sleep. During the course of an eight hour sleep period, a person should cycle through the various sleep stages every 90 minutes or so.

    Stage 1 sleep is a transition period between wakefulness and sleep. Sometimes you may have a sudden dream onset. You may still be connected to the awakened world and could easily be aroused into wakefulness.

    From Stage 1, you will descend into Stage 2 where your breathing and heart rate will begin to slow down. During the continuous sleep cycles throughout the night, you should spend almost half your sleep time in Stage 2.

    Next comes Stage 3 and 4, which are somewhat similar. This is sometimes referred to as Delta Sleep because of the slow delta brain waves which have been recorded during this sleep stage.

    Delta sleep is a regenerative period where your body heals and repairs itself. Sometimes during illness, your body may fall immediately into Delta sleep because infection fighting antibodies are produced in greater numbers in this sleep stage.

    The first episode of Stage 3 and 4 sleep lasts from 45-90 minutes. Progressive episodes of Delta Sleep have shorter and shorter time periods as the night goes on. After several complete sleep cycles earlier in the night, your body does not re-enter stages 3 and 4 any longer, but enters the 5th Stage also called REM (rapid eye movement)

    Stage 5 is also called REM or "rapid eye movement". It is during REM periods that we dream. Your body creates chemicals that make you temporarily paralyzed. Your mind is extremely active, and your eyes are moving as if you were awake.

    In REM, your heart and breathing rate increases and becomes irregular. Your eyes move from side to side.

    As the end of your sleep period approaches, your body temperature begins to rise. Your breathing and heart rate normalizes. You may awake suddenly, perhaps remembering a dream, as you have just ended a REM period.

    Alpha intrusion [alpha wave intrusion]

    Alpha intrusion is exactly like it sounds. Alpha (daytime - awake) brain waves interfere with Stage 4 (deep restorative, regenerative period where your body heals and repairs itself).

    With very little or no delta sleep, our bodies get no chance to heal and repair from the activities of the day.

    Xyrem is becoming the most popular drug to treat this condition.

    Sleep Apnea

    There are 3 types of sleep apnea: obstructive, central and mixed. People with sleep apnea stop breathing repeatedly during sleep. Untreated this can contribute to heart problems, high blood pressure, stroke and diabetes.

    Obstructive sleep apnea (OSA) is usually caused by physical abnormalities such as a narrow airway, enlarged tonsils/adenoids, enlarged tongue, a recessed jaw, or nasal obstruction/congestion. Obstructive apnea occurs when the normally patent airway closes and blocks the needed airflow.

    Central apnea (CSA) occurs when the brain fails to send the necessary signal for the breathing muscles to begin a breath. Although a neurological disorder, it is similar to OSA, in that every time breathing ceases, oxygen levels can drop and the heart works harder.Mixed apnea occurs when there are both central and obstructive apneas present in the same breath.

    An apnea is the complete cessation of breathing for 10 seconds or more, and sometimes can even last over a minute.

    A Hypopnea is an episode of reduced airflow (usually by one-third or more) often accompanied by a drop in oxygen saturation and/or a measured arousal in the brain.

    Pickwickian Syndrome - the first term applied to obstructive sleep apnea, originally described by Charles Dickens in 1836. It referred to people who were excessively sleepy, loud snorers, and overweight.

    primary snoring - snoring not associated with apnea.

    A board certified sleep doctor is one who is specially trained in sleep and sleep disorders. They are usually Pulmonologists or Neurologists, but not limited to those specialties. You can find a list of sleep docs in our Directories located in the Sleep Disorder Information page or in the EASY REF GUIDE located in the left nav bar in the chat room.

    Gastroesophageal Reflux Disease, or GERD, occurs when stomach acid moves in the wrong direction, flowing back, or refluxing, up the esophagus (the tube that carries food from your throat to your stomach), and causing discomfort.

    Over time, reflux of acid erodes (burns away) the lining of the esophagus, leading to inflammation and ulcers, a condition called erosive GERD. Left untreated, it can lead to more serious problems, such as: Bleeding from the lining of the esophagus, Esophageal stricture (a narrowing of the esophagus) or Barrett's esophagus (a precancerous change in the lining of the esophagus).

    Narcolepsy (N) is a chronic sleep disorder. The main characteristic of N is excessive and overwhelming daytime sleepiness. A person with N is likely to become drowsy or fall asleep at inappropriate times and places. Daytime sleep attacks may occur with or without warning. Sleep attacks may be irresistible and may occur repeatedly in a single day. Note, these symptoms are rarely seen in children.

    Narcoleptics may experience other symptoms. Excessive Daytime Sleepiness (EDS), Cataplexy (C), Sleep Paralysis (SP), Hypnagogic Hallucinations (HH), Automatic Behavior (AB), Disrupted Nighttime Sleep (DNS), Microsleeps (MS) and others. Children rarely manifest all 4 symptoms.

    Cataplexy (C) is a temporary decrease or complete loss of muscle control triggered by a strong emotion such as laughing, anger, or surprise. It can range from a weakness in the knees to a complete "rag doll" collapse to the ground. Though conscious and aware of their surroundings you are essentially paralyzed. The frequency of C varies from person to person and they usually does not last more than a few minutes.

    Cataplexy is seen in about 70% of patients with narcolepsy, and its presence with excessive daytime sleepiness strongly suggests the diagnosis of narcolepsy Specific historical question concerning cataplexy are required.

    Sleep Paralysis (SP) is a brief loss of muscle control that occurs as a person is drifting to sleep or awakening. While somewhat aware of their surroundings, they are unable to move or speak. It is often accompanied by hallucinations.

    Normal sleep paralysis occurs during REM sleep in normal subjects.

    Hypnagogic Hallucinations (HH) are vivid dream-like images and sounds that are experienced at sleep onset. These images can be very frightening. Emotions that can accompany these images are fear, anxiety, and dread.

    Automatic Behavior (AB) is when a person performs tasks and activities while awake and without recollection of the event. Essentially, it is a "black out" during wakefulness.

    A Microsleep (MS) is a lapse from wakefulness into sleep (stage 1) that lasts just a few seconds. Characteristics of microsleeps include repeated yawning and/or difficulty keeping ones eyes open. Memory formation is usually impaired during microsleeps.

    Disrupted Nighttime Sleep (DNS) A person may awaken several times throughout the night or awaken and remain awake for long periods of time every night.

    Other symptoms are: Weak limbs and general weakness, Depression, Inability to concentrate, Confusion, and Shortened attention span.

    Sorry that this is so long, but I can't emphasize enough the need for a sleep study. The benefits of effective treatment for a sleep disorder can make a significant difference in your life.

    If you go to the talk about sleep website and look near the top, left, under "Quick Links," you can click on "View a Sleep Study," and get an idea of what to expect.

    It looks rather complicated but it's not really. Also, the room that I slept in looked much like a motel room with a very comfortable double bed, a dresser, chest, table and chair, and private bathroom.

    The only "hospital" reminder in the room was the machine on the bedside table, and I didn't pay any attention to it.

    If you like to read before you go to sleep, take a book, as they don't have a problem if you try to closely follow your routine.

    ***** If you don't have insurance and you need a sleep study, please read donnaeil's post below!! Cost for the uninsured. *****


    [This Message was Edited on 09/29/2005]
  2. Dee50

    Dee50 New Member

    Thanks Abbylee,
    Great post lot of good information. What do sleep studies cost? Or what have some paid that have had one done? I'm a cash pay person no insurance ect... I'm wondering if it's a package cost or if you have to buy extras to get the whole picture. What do the machines cost that you use when you sleep?
  3. abbylee

    abbylee New Member

    The cost varies. The sleep study itself costs no more than an office visit where I had mine done.

    There is also a cost to "read" the study, but I have insurance and it paid most of that cost.

    Sometimes sleep studies are free. It depends on the sleep clinics near you.

    abbylee PS - Sorry I couldn't be of any help about the cost.
  4. abbylee

    abbylee New Member

  5. abbylee

    abbylee New Member

  6. elsa

    elsa New Member

    Miss Abby, I am with you 100% .... have just become lazy since you are doing such a good job getting the word out. Sorry about that .... Consider me "back on the team"!

    The more enlightened doctors become in regards to CFS/FM, the more they realize the import of sleep studies.

    They should be done during all the other confirming CFS/FM testing .., ie blood work to rule out rheumatiod athritis,etc.

    Not all sleep medication treat all sleep disorders equally. Your doctor needs to know which sleep disorder you suffer from in order to treat you properly.

    I'd like to add a little more concerning REM sleep. This stage has not been studied as deeply as levels 3&4, but it can be just as destructive. Too much REM, going straight into REM or zero REM present different problems and require different medication.

    In my case I had only about 20% alpha intrusion. Not near as bad as many of ya'll. However, I had zero REM sleep. ( Many medications can cause this to occur, yet in my case that did not apply.) For example, SSRI's will suppress REM sleep ... and I don't take SSRI's.

    Without having my study done, we would have continued to treat my insomnia inappropriatly.

    What to do if one goes straight into REM (instead of going through the proper sequencial stages) ... SSRI's work very well. High REM sleep is also indicative of depression.

    Straight alpha intrusion .... Xyrem is best. Ambien is also a good choice. The popular natural remedies are good too.

    Alpha intrusion with high REM ( but not necessarily going straight into REM ).... klonopin, gabatril,etc. plus trazadone is a good combination.

    No REM ... lunesta is best. It is the only rx for sleep problems that I have come across that does not suppress REM. If this is your particular problem, you need to make a complete list of medications to stay away from. The list is a long one I'm sorry to say. This includes natural supplements as well ... (ie valarien root, 5-htp are REM suppressors).

    The list needs to include you daytime meds/supplements as well as anything taken to induce sleep.

    Lastly, with alpha intrusion and suppressed REM, the body is not generate GH. Everyday life produces multi muscle tears. Without GH the repairs do not occur resulting in a hugh magnitude of torn muscle tissue producing pain and weakness.

    Treating with GH or a GH stimulator under a professional's care is a good game plan.

    I hope this helps in the "cause". Without all the technical stuff, the bottom line is ... improved sleep reduces CFS/FM symptoms to a hugh degree. The trick, as always, is to find an excellent pulminary/sleep disorder specialist to get started.

    Educate yourself ... you might have to educate your doctor. If you find the doc won't order a sleep study and he uses excuse of unnecessary insurance cost, then call his bluff.

    Look him dead in the eye and inform him this proceedure is necessary according to the leading CFS/FM experts and that you'll pay for it yourself if he feels ruled by the insurance company. You'd be surprised how quickly it will turn into a "necessary cost" with the insurance footing the bill.

    Take are,


  7. abbylee

    abbylee New Member

    Thanks so much for adding to the sleep information.

    Please correct me on this, but I thought that if a person goes into REM within 5 minutes or so of going to sleep, they are diagnosed with Narcolepsy.

    I work with a girl who has Narcolepsy. She says that during a sleep study for Narcolepsy, the patient is told to go to sleep several times during the day - two hours apart, I think she said, and sleep for 20 minutes. They diagnose based on the number of times the patient goes into REM almost immediately.

    Is this correct as far as you know? This girl was also given Xyrem, but is not taking it now as she is expecting.

    We are all learning so much about this now, so anything you can add is greatly appreciated.

    abbylee I did try Ambien but I walked the floor all night long!! Some of those hypnotics (I think that's what they're called) don't work the right way on me.
    [This Message was Edited on 09/29/2005]
  8. skyeone

    skyeone New Member

    Just a question.

    What do you do if you go to a sleep clinic and they don't do an actual study? I told the doc there that I regularily stop breathing in my sleep and that I don't go into REM sleep. He figured I had a "mild" case of sleep apnea and sent me home. This happened several years ago, should I do anything about this?

  9. abbylee

    abbylee New Member

    Yes you should. You should go to another sleep doctor and request a sleep study. Tell your doctor that you think you might have sleep apnea and you want to be tested to be sure.

    If you have it, you are putting extra stress on your heart everytime you stop breathing. You may need a cpap.

    I would not walk, I would run to the doctor and find out what is going on.

  10. CAAnnieB

    CAAnnieB New Member


    Thanks for posting the great sleep info Abbylee & Elsa! I agree that everyone should have a sleep study as part of their FM/ CFIDS workups. Goodness, if they had done this years ago on me...The insurance company would actually have saved money in the long run! AND, I would not have been suffering for so many years!

    I'm still working out the kinks of getting used to the CPAP...The other night, I took off my mask & turned the machine off without even realizing it! I was bummed when my hubby said he had woke up at 1 A.M. & saw I wasn't hooked up to the CPAP! He thought I had a good reason. I told him if it happens again he should wake me up & tell me to get back on the CPAP!I could tell the difference the next day...Less energy, had sleepiness in afternoon & pain was more.

    My mask is hurting the bridge of my nose ): Any tips from experienced CPAP users out there? I'm even using a bandaid on my nose at night! It's a minor thing, but my nose does look pretty weird!

    When I use the CPAP all night long, I wake up feeling energized! My pain levels are very much reduced. Even my stomach pain seems to be subsiding! It's really been amazing to me!

    I've only been using the CPAP for 2 weeks, but I am very attached to it! There's NO WAY I'd give it up! It has brought me more relief than ANYTHING I've tried so far!

    My sleep studies cost $2,000 each. That fee includes the Dr. interpreting the data & writing a report with recommendations. I haven't seen how much the followup appointment costs yet. I only have to pay office visit copays because I have insurance. The DME man said the CPAP machine costs about $1350-$1400. Thankfully, that is covered by insurance for me.

    I know it sounds like a huge expense (it is for most of us), but I bet if I added up the cost for all the supplements, medications & Dr. visits I have paid for over the past years; it might even surpass that! Some of those supps & meds might be helping, but I bet I might never had needed some if I had started CPAPING sooner!

    I'll keep everyone posted on my progress...I am very curious to find out more at my one month follow-up appt. I want to talk to the P.A. re: meds & supps and if she thinks any are interferring with my sleep. It will be interesting to go over data from one month on CPAP. My machine has a "Smart Card" which records hours used, # apneas & the pressure settings. (Mine is an auto adjusting machine for pressure)

    Blessings & Sweet Dreams,
    Annie B.
    [This Message was Edited on 09/29/2005]
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    [This Message was Edited on 09/29/2005]
  11. orachel

    orachel New Member

    I was pretty adamant with my physical medicine doc that I needed a sleep study. Clinic just got back with me. I'm scheduled for an initial consultation with sleep specialist Oct 6th, then according to scheduler, I will have 2 nights of monitored sleep (8pm-6am) approx 2 weeks apart in their facility. First is normal sleep, 2nd is with oxygen mask.

    As to cost, insurance will cover 90% of mine, have no idea what total cost is yet.

    My questions for all you who seem to know a ton abt sleep studies ...

    My sleep varies WIDELY from night to night, or at least my awareness of sleep issues varies. Some nights I wake 10-15 times each night, others (like last night...yeah!) I seem to sleep ok. What happens if this study catches me on a "good night"?

    I know sleep issues are contributing greatly to my symptoms, but I've also come to realize that even though I was diagnosed only a few mos ago, I've been sick with CFS and FM for many years with much lesser symptoms. Here's the rub...up until last 4 mos or so, I always "seemed" to sleep really really well! Any ideas?

    Thanks for all info!
  12. gardenwriter

    gardenwriter New Member

    I'd love to know more about these. I am scheduled for a sleep study on November 17. My neurologist recommended it when I mentioned Restless Leg Syndrome in addition to my fibro and other neurological problems. The preliminary interview also revelaed that I had a narrowed airway, although I've never been aware of any sleep apnea.

    What I do know is that when I nap, I almost always have truly terrifying dreams, and the most terrifying part of them is that I truly believe that I have awakened myself - and yet the horrors continue - although once I "wake up" they change. The sleep doctor said that often we go into a deeper sleep in a nap than at night which accounts for this - but the dreams can be so awful that now I hesitate to nap even if I am exhausted.

    Has anyopne else experienced Hypnagogic Hallucinations and can they describe them or give an example?
  13. abbylee

    abbylee New Member

    CAAnnieB - So glad you found this post. I figured you'd see it!! I hope you didn't mind that I included you at the top.

    orachel - I wouldn't worry about what kind of night you may or may not have. They know that you aren't going to sleep just like you do at home, so somehow they work it out. Especially since you're going twice. I went only for one night.

    gardenwriter - I've not had nightmares or anything like you describe except when I took Zanaflex for a time.

    If you go to the talk about sleep website and look near the top, left, under "Quick Links," you can click on "View a Sleep Study," and get an idea of what to expect.

    It looks rather complicated but it's not really. Also, the room that I slept in looked much like a motel room with a very comfortable double bed, a dresser, chest, table and chair, and private bathroom.

    The only "hospital" reminder in the room was the machine on the bedside table, and I didn't pay any attention to it.

    If you like to read before you go to sleep, take a book, as they don't have a problem if you try to closely follow your routine.

  14. elsa

    elsa New Member

    Hi Abby and Carol .....

    You are correct in your thinking about REM sleep and narcolepsy. For people with narcolepsy sleep begins almost immediately with REM and fragments of REM occur involuntarily throughout waking hours. REM occurs instantaneously for these people.

    Treatment for narcolepsy is usually with amphetimine or amphetimine like medications during the day to combat EDS. Provigil, Adderall, etc are very commonly rx'ed.

    Xyrem ( sodium oxybate )is very often rx'ed at night for it's REM supressing activity. Same goes for tricyclic and SSRI antidepressants.

    Carol, I can see where Hypnagogic Hallucinations can be terrifying. How is your doctor helping you with this?

    It is my understanding that Hypnagogic Hallucinations are the third and final diagnosisng symptom of narcolepsy. ( first two being excessive daytime sleepiness and cataplexy.)

    HH occurs because of the heightened REM. These are vivid visual and auditory illusions that are similar to being in a dream while conscious. ... A Blurring of the line between sleep and wakeful states. It would terrify me too.

    What meds are you taking for this? Xyrem at night and provigil during the day sounds plausible ... but that's just me. LOL

    Some side information on REM ...REM is important for overall health and regulates the central nervous system.

    REM stimulates the thalamus and cerebral cortex. It is connected to thinking, learning and organizing information.
    Which might explain my CFS/FM improvement with treatment.

    More information about the "short acting" sleeping pills,ie sonata, ambien and lunesta.

    Sonata is the weakest of the three. Ambien is a step up which peaks in about 1.6 hours and a 2.6 hour half life.

    Lunesta is the longest "short acting" of the group. Peak is 1 hour with a 6 hour half life. This is a good rx for those who have the combination of 1. can't fall asleep and 2. can't stay asleep.

    I didn't have xyrem information in my notes since I can't take it, but I sure Abby can answer any questions anyone might have about it.

    Rachel ... You would be surprised about what the study can pick up vs what you thought occured. I could have sworn it took me at least an hour to fall asleep .... uh ... study said 12 minutes. That was considered a "good night" for me.
    Oops .. LOL

    I would suggest that you don't take your bedtime meds the night of the study. Actually, for me I didn't take them for two nights prior ... wanted to get as clear a reading as possible.

    My doctor gave me the choice of whether to take them or not ... so I guess it doesn't matter. I don't see how though, but it's not like I'm a doctor or anything. LOL

    Good luck to all. I would so encourage everyone to have this done. Insomnia isn't the "mother's little nightmare" of the 50's. It can lead to many, many physical problems and illnesses. If REM is responseible for regulation of nervous system and I wasn't getting any REM ... hummm what does that say? LOL That I'm a nervous wreck ?!?

    Take care all,


    [This Message was Edited on 09/29/2005]
  15. abbylee

    abbylee New Member

    Thank you ssssoooo much!! I don't know a lot about Narcolepsy or the other sleep disorders so I'm so glad you contributed to this thread!!

    I hope everyone who reads this will check out the sleep study that I talked about above!!
  16. abbylee

    abbylee New Member

    Thank you for posting about your sleep study!! I didn't know about the financial assistance so this is great news for those who can't pay.

    Since some don't read all of the posts in a thread, I hope you don't mind if I put your name in my initial post.

    [This Message was Edited on 09/29/2005]
  17. MeNow

    MeNow New Member

    I had one last summer and that should have been the first diagnostic tool for fibro. I knew for long that I had insomnia and that my sleep was not refreshing. The sleep study brought to light all my sleep problems.
    I got there that night with a big hockey bag ( for my pillows) some people were looking at me like a weirdo but in the morning they wished they had their own pillows.
    So many things were discovered during that night, I already stated to use an appliance to keep me from stopping breathing and my blood O2 is a lot better. At the next sleep study I will know if I need more than a mouth appliance.
    Good article. I applaud. MeNow
  18. abbylee

    abbylee New Member

    Thank you for contributing to this thread. The more input we get, the more we may influence folks to go for a sleep study!!

  19. Dee50

    Dee50 New Member

    Thank you Abbylee for starting this thread.
    Thank you to all for sharing their test, treatments plans and the costs for folks like me with no insurance.

    I'm looking into it and help to pay for it.
  20. abbylee

    abbylee New Member

    You are very welcome. Good luck with finding funding for a sleep study!!


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