Anyone diagnosed w/ FM narcolepsy?

Discussion in 'Fibromyalgia Main Forum' started by JJMMRJ, Jun 29, 2008.


    JJMMRJ New Member

    Hi everyone,

    I've had fibromyalgia for 10 years now (I'm only 21), and when I was diagnosed 8 years ago, they told me I had FM and "chronic fatigue syndrome." I always just assumed I had something called CFS, but never saw a sleep specialist/neurologist about it. One of my drs recently asked me to take a sleep apnea test (which I thought was crazy, b/c I felt sure I didn't have it), but it turns out the results came back positive. I thought this didn't seem right, so I wanted to speak with a sleep specialist to find out why it came back positive.

    Anyways, I was sitting in his office explaining I didn't snore or wake up gasping, but he kept asking me all these questions that seemed unrelated. He was surprised with some of my answers, and said, "Hmmm, and I thought this was just going to be another typical patient." In the end he told me that based on what I said and some of my sleep history, that he thinks I have narcolepsy. This really took me by surprise, b/c I thought that meant you had to randomly pass out, but I guess that is only worst case scenarios, and that there is a lot more to it.

    I'm still waiting for more tests and the results, but I was interested if anyone w/ FM had their drs bring this up to them.

  2. xchocoholic

    xchocoholic New Member

    I'm confused. Where you diagnosed with sleep apnea or narcolepsy ?

    Depending on which one you have, the treatment is different. I'm not up on sleep apnea other than some kind of apparatus is prescribed that you use at nite to help you breath.

    I was diagnosed with nocturnal myoclonus, a sleep disorder where you jerk yourself awake when you go into REM sleep.

    But I also could fall asleep, not completely though, at the drop of a hat.

    My sleep disorders were from gluten and are gone so long as I avoid gluten. If you're not familiar with gluten, try searching here or googling it. It can be responsible for all CFS and FM symptoms.


    PS.Provigil is a med used for narcolepsy as well as for fatigue in some CFS patients. If you have a narcolepsy diagnosis you're insurance should cover it too. I tried it but it kept me up all night.
    [This Message was Edited on 06/29/2008]

    JJMMRJ New Member


    1st I had a test that came back positive for sleep apnea. So i went to a sleep specialist. He tells me he thinks I have sleep apnea (+ test, runs in family, lots of dental work, small mouth), but he also thinks I have narcolepsy.

    Test wise, I have 1 test that is + for sleep apnea, so he wants more to confirm. I have no tests for narcoplesy, just he believes i do. I am waiting for the results for the narcolepsy tests.
  4. wanderingbluedragon

    wanderingbluedragon New Member

    I had a sleep study as well. I have not heard the results from it other than I do not have sleep apnea. I've wondered about the narcolepsy part though as I get these waves during the day that make it to where I have to sleep; my body doesn't give me a choice. I just get overwhelmingly sleepy and have to lay down. I don't randomly pass out either, but I did fall asleep at the wheel 6 years back and caused myself to be in a horrific car accident.
    I have no clue if they are related but I am on a low dose of stimulant medication to help wake me up during the day. I tried Provigil before but it did not work.
    I don't know if I have narcolepsy, but as I said, it seems feasable.

  5. cindymindy

    cindymindy New Member

    What kind of test do you take to find narcolepsy? I have sleep apena and think I also have the other, I fall alseep anytime and anywhere.
  6. Goldyfm

    Goldyfm New Member

    I saw a second sleep study specialist before being diagnosed with sleep apnea. It depends on the specialty of the doctor performing the test as to what kind of sleep study is performed. My first was by a pulmonary specialist and a limited study which only showed Restless Leg Syndrome. However, I was later studied by a Neurologist Sleep study specialist who confirmed I had sleep apnea. He used a more thorough study to diagnose.

    I tell you this as I was having periods of what I refer to as narcolepsy before I finally started CPAP therapy and had to leave off anti-depressants. I was falling asleep in mid-sentence, or mid-meals at times and did not drive for almost a year and a half because of this problem. I would awake from the sudden sleep attacks and not remember anything that happened just prior to my falling off. I was sleeping more than I was awake, but I was not resting!

    I will say that my sleep habits have greatly improved since beginning my CPAP therapy. It does take time to get accustomed to the apparatus and may even require having the machine adjusted several times before you can tolerate and get good results. I do feel rested when I awake now and have had no occurances of the narcolepsy like symptoms once I was on the CPAP religiously. It is not that bad to sleep with now and I miss it if I have to leave it off for a night. Rest has greatly improved my mental attitude if not my other symptoms. At least now, my life is a little more orderly than it was before my diagnosis and treatment.

    I do hope you follow through with your sleep treatment plan. It took some time to achieve the level I have attained but it is worth every doctor appointment, test and medication I have had to endure. Good luck to you.

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