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Patient Stories – Rachel’s Story

A Story Of Narcolepsy And Fibromyalgia

I use the term Prison of Pain to describe how my two life-long chronic conditions affect my everyday life. To the novice, my conditions would only affect my physical well-being, but to those who truly understand, they know Narcolepsy and Fibromyalgia affect every single aspect of my being:  physical, mental, emotional, and spiritual.  Narcolepsy is an extremely misunderstood, grossly under-diagnosed, and wrongfully stereotyped neurological/ sleeping disorder. Of the 200,000 Americans who are projected to live with Narcolepsy, only 50,000 of them are properly diagnosed. Movies and stereotypes often portray us as falling instantly due to a sleep attack (Excessive Daytime Sleepiness); however, this is highly erroneous, because we are most likely to instantly fall due to the second most common symptom of Narcolepsy,Cataplexy which causes our body’s muscles to either partially or completely collapse whenever we experience extreme emotion, especially laughter, surprise, anger, and for me fighting off a sleep attack.  My cataplexy is severe without medication. I fear I would be in a semi-constant state of cataplexy, sleep paralysis, hypnogogic/hypnopompic hallucinations, and extreme sleepiness/sleep attacks. That’s how I lived my life before Xyrem. My sleepiness is still really extreme, and it haunts me all day long. I use up what very little energy I have to fight it off, but ultimately, it is a losing battle and best to give into sleep many times a day, because I still get strong cataplexy when I try to fight off sleep attacks. You don’t typically instantly fall when having a sleep attack; you usually have time to hurriedly find an at least semi-appropriate place to nap. I am unable to drive or work due to the severity of my Narcolepsy.

I am one of the 25% of those living with Narcolepsy who experience all four of the major symptoms of narcolepsy.  It began with the Excessive Daytime Sleepiness/sleep attacks of Narcolepsy as a sophomore in college, when I began very unintentionally dozing off in class, and then waking up 15 to 20 min. later thinking, “What the heck! I wasn’t even bored, what the devils….Why are my notes such a horrible mess!”  My classmates/friends laughed with me that they had to constantly wake me up in class!

It wasn’t until the week of the very fateful 9/11/2001, that somehow emotionally triggered by the utter trauma of that tragedy, I began experiencing sleep paralysis concurrently with horrifying hypnogogic/hypnopompic hallucinations nearly every night, for 3 to 4 hours each night. In these episodes, my nightmares about 9/11/2001 became a horrifying reality (at least in my experience). I could hear the intruders (spies, enemies, etc.) breaking in, messing with the doorknobs of our apartment, enter and hear their voices. I could see their silhouettes, feel the fire and pain of nuclear warfare, and the intruders torturing me as I was totally paralyzed, unable to speak or move.  By that December, I was having full body collapses due to cataplexy many times each day, especially due to laughter and sometimes, anger. I was diagnosed in February 2002–  I experienced it as both a relief and deep grief, as if a loved one had died within myself.  From that point on, Narcolepsy…its stigma, torturous symptoms, etc. became an instantly synonymous fundamental part of my identity.

Fibromyalgia is a fairly common condition, as it is estimated to affect 10% of the general population, mostly women, who live with this extremely painful, elusive syndrome. Very similar to Narcolepsy, persons with fibromyalgia often spend several years seeking proper diagnosis, only to get misdiagnosed and/or told it is “all in his/her head.”  Fibromyalgia Syndrome causes its sufferer to experience a vast array of troubling symptoms.  The hallmark symptoms of fibromyalgia include widespread chronic muscular pain, which occurs is all four quadrants of the body.  One must feel pain in 11 of the 18 tender points when examined by a physician, in order to be diagnosed with fibromyalgia. I say fibromyalgia is first and foremost a neuromuscular disorder, because it causes my muscles to hurt severely and contract (feeling like charley-horses) spontaneously, for no reason.  It feels as though I have been violently beaten from the inside, especially in my calves.  My calves hurt so badly all the time that often I can barely walk.  It is extremely important to reiterate that fibromyalgia affects all types of muscles and other soft connective tissues (cartilage, tendons, and ligaments):  voluntary skeletal (legs,arms, back, hips, TMD, etc.), cardiac (mitral valve prolapse syndrome), and involuntary smooth muscle (stomach acid-reflux, irritable bladder syndrome, irritable bowel syndrome, endometriosis, etc.).

I have suffered with Fibromyalgia since the age of 19, but have only recently been diagnosed after many years of misdiagnoses. It was only after attending the national Narcolepsy Network conference and hearing Fibromyalgia was also a sleeping disorder that I decided to do some research on the internet about it as soon as I got home.  When I read the introductory description about Fibromyalgia, I realized, oh my goodness, that’s why my muscles have hurt severely, for so long!  My calves hurt me the most, making it very difficult and painful to walk.  All of my joints experience pain, especially when in an uncomfortable position– e.g. folded up Indian-style, kneeling or bending.  Primarily my knees, elbows, and wrists (Carpal-Tunnel Syndrome) are my most painful joints to use. People with Fibromyalgia also experience weakened immune systems and run low-grade fevers. Science has discovered that persons with Fibromyalgia have twice as many pain receptors and produce a much higher volume of substance p, the neurotransmitter which signals pain in the brain and spinal cord.

It is really exciting to hear that research has recently discovered that persons with Fibromyalgia have less of the neurotransmitter dopamine in the brain than normal persons. Finally, there is concrete evidence that Fibromyalgia is in fact a genuine medical disorder, not a figment of my imagination or a form of hypochondria.

I encourage anyone who is interested in learning more about narcolepsy and fibromyalgia to join in the live online chats and message boards at It’s a great resource for information and especially for patient-to-patient support.

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Comments (3)

  1. For the past few years, I have been falling asleep uncontrollably during the day. I have tried everything to fight off these “sleepy periods” including drinking more water and exercising when I feel one coming on. I asked my family doctor, who has been my doctor as well as my parent’s doctor, for the past 25 years, if there was anything that could be done … and he told me to exercise more and eat properly. So I did that … and I lost 40 pounds which I desperately needed to lose. But I’m still falling asleep continuously during the day and early evening. I would have thought that where my father was diagnosed with Narcolepsy that my doctor would have sent me immediately to be checked out … but no, he kept telling me that this disorder does not run in females … I just needed to exercise more. I can’t exercise any more …. unless they make more hours in the day.

    I made a change in doctors about six months ago and finally my new doctor is taking me seriously, especially once I described how my muscles relax when I fall asleep and even though I can hear what’s going on around me, I can’t move. And this lasts between 15 – 20 minutes. It’s not brought on by laughing or any other “emotional” trigger because I work by myself and I definitely don’t laugh, cry or exhibit anger or other emotions when I’m here by myself.

    The other day, I asked my mother what my father was like when he was diagnosed with Narcolepsy. I was surprised how similar his condition is to how I feel. Also, during the past few weeks, I was wondering if Fibromyalgia could play a part in my condition. I know that I have restless leg syndrome which my “former” doctor told me was growing pains … even though I am in my late fifties and I’m exactly 5 feet tall. I do believe I am not going to grow any taller … no pills can change a vertically challenged condition. LOL. My body aches … there’s no other way to describe it … especially when I have been sitting for a little bit. But I still exercise every day … at the gym for 60 minutes every morning and at least 3 fitness classes a week. If I didn’t exercise, I don’t think I could walk at all.

    My new family doctor has me booked to see a neurologist and I’m just waiting for an appointment. Hopefully it will be soon. What I want to know is this … what questions should I ask the neurologist so I can be taken seriously. I know that people feel if you have Narcolepsy or Fibromyalgia that you aren’t sick … what you can’t see isn’t real. Not true at all.

    Thanks for listening and I appreciate any help that you can give me.

  2. Pingback: Fibro Daily | Fibro Daily’s Sleep Series: Narcolepsy - Fibro Daily

  3. I too also suffer from fibromyalgia and narcolepsy. I have had bouts of cataplexy (mild head and right arm drops to full on falling) and sleep paralysis which is extremely scary. I’ve been in a car accident falling into a micro sleep. That was very awakening for me and was very lucky myself and my 18 year old son wasn’t seriously injured totalling my car. I was taking narcolepsy medication, unfortunately it only works at the higher dose for approximately four hours on a good day. If I didn’t get restful sleep it didn’t seem to help at all. Had moments when I still worked where I would write or type while awake very sloppy part of I guess what I was dreaming, or find myself in like a trance and start laughing and come to confused not sure why I was laughing wondering if anyone saw me looking stupid. I was accused of being on drugs, had a couple random UA’s. That was so frustrating and hurtful.
    I suffer from varying degrees of pain but always in some sort of pain. My husband can rub his hand over my arm and have an extreme Charlie horse, slurred speech, forgetful, IBS, tendinitis, GERD, inflammatory arthritis, unknown cause of severe edema, migraines and auras, low grade fevers, eczema, raynauds, vasomotor rhinitis and I’m certain I’m forgetting some. My memory can get really bad, I will take my medication and min later not remember if I took it. Forget common words, friends and family are sweet and say they love my charades ” you know that thingy, what’s it called… looks like or does this etc.”
    I can say that both of these seemed to progress over the years. I still keep a positive attitude although at times haven’t wanted to. It also took me many years to open up to other family and friends what I felt like was embarrassing because I couldn’t do the things I used to. It took me coming to terms with it before I could share. It’s not a dirty secret, you need to at least hear that you are supported.
    I don’t wish my daily battles on anyone, just know you are not alone!

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