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Adrienne Dellwo

Chronic Fatigue Syndrome or Narcolepsy?

By May 9, 2009

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Better Sleep Month Series

At first glance, it seems silly to suggest that chronic fatigue syndrome (CFS or ME/CFS) could be connected to narcolepsy. In part, however, that's because narcolepsy is almost as misunderstood as ME/CFS. Most of us only know what we see in the popular media, where narcoleptics regularly nod off at comically inappropriate times. It's a lot more than that, and the closer you look, the more it looks familiar.

I'm going to give you a list of symptoms - see if you can figure out which condition they go with:

  • Excessive daytime sleepiness that's not relieved by rest
  • Word slurring
  • Buckling knees
  • Forgetting things you've done
  • Being unable to complete a sentence

Which do you think it is? The answer is: both.

I've been dealing with narcolepsy symptoms lately, including the ones above and several others that aren't indicative of ME/CFS. (I believe it could be linked to gluten intolerance, and while there are theories about that none have been proven.) At first, I feared that I'd developed ME/CFS because I'd heard so many similar descriptions in my forum. But then I had some symptoms that didn't fit either ME/CFS or my suspected celiac (tests are pending) and did some investigating.

As I learned more about narcolepsy, I realized how easy it would be for a doctor to mistake it for ME/CFS and vice versa - especially since we don't have universal, widely accepted diagnostic tests for ME/CFS. A few doctors and medical experts are looking into possible connections between narcolepsy and neurological conditions, including both ME/CFS and fibromyalgia (FMS). Some researchers have recommended ruling out narcolepsy before diagnosing ME/CFS, but it hasn't become a common practice.

This shored up my belief that those of us with these conditions should have sleep studies, both to help with a diagnosis and also to guide our treatment. I'll delve into the other reasons for this next time. For now, here's a list of other narcolepsy symptoms I hope you'll familiarize yourself with:

  • Cataplexy: A sudden loss of muscle tone, sometimes triggered by intense emotions. It can lead to weakness, collapse, and temporary paralysis.
  • Sleep Paralysis: The short-term inability to move or speak either while you fall asleep or wake up.
  • Hypnogogic Hallucinations: Hearing, seeing or feeling things that aren't there as you start to fall asleep.

The sleep attacks we generally associate with narcolepsy don't happen to everyone. As with FMS and ME/CFS, not everyone with narcolepsy has the same set of symptoms or has them to the same extent.

Have you experienced any symptoms of narcolepsy? Do you have narcolepsy, or suspect you do? Did your doctor rule out narcolepsy before diagnosing you? Share your thoughts and experiences by leaving a comment below!

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Comments
May 10, 2009 at 3:41 am
(1) dots says:

I had progressively worsening narcolepsy (self-diagnosed) for over 20 years before my celiac diagnosis (blood and biopsy positive). In college, I’d almost fallen asleep while driving over railroad tracks and opened my eyes to look in the rear view at a train, to (at age 40) falling asleep in the hairdresser’s chair. I was given Provigil by a psychiatrist to help (gave me a heavy heart and palpitations). It just kept me wired, but the underlying sleepiness was still there.

I used to trip a lot also, which I attribute now to a B12 deficiency. Heck, I was deficient in everything. Since instituting the gf and low glycemic diet and supplementing, I feel very normal, which is a new experience for me. Had to share.

May 10, 2009 at 11:23 am
(2) Allie says:

I was diagnosed with CFS/ME in 1989 and the sleep disorder, periodic limb movement disorder. Up until two years ago, I didn’t seem to have difficulties staying awake during the day, but for the past two years, I can stay awake during the day for only three hours before I need to take a nap. I’ve been taking Ritalin for the past ten years to keep me focused, but even with 20 mg of Ritalin, I can fall asleep almost immediately. CFS/ME and narcolepsy is an interesting association. I’ll be watching for more information on this topic!

May 11, 2009 at 12:29 pm
(3) Robert HORNBUCKLE says:

I have had narcolepsy sent the age of eighteen ,right after high school i went to work for a chemical plant that make fertilizer,do you thing that you can be expose to certian chemicals could cause this.I am 56yrs.old and my health have gone from bad to worse also i have tryed just about every kind of medicine,but having found anything that will work,i feel like a dope, nothing works.

May 15, 2009 at 7:03 pm
(4) Helen says:

Lately for about 3 weeks now I thought I was going out of my mind. I have not been able to sleep and when I get up all I want to do is go back to bed. Nothing matters, I don’t want to eat or even get dressed. I do get up on occasion to get a drink. If I do try to stay up just to prove I can or just to get something done. I always end up back in bed. My family knows about my Fibro but even they think this is just crazy. I don’t know how to deal with this, I end up just giving in to the sleep because I can’t function and I can’t even think (fibro-fog). I am going to graduate school so I have time until I get a job. Right now I’m taking exams and it is not going too well. Studying is very short and my scoring is not what It needs it to be. So I am frustrated. I also have major depression and anxiety for which I am being treated. But this is different and it seems like I’m in some kind of cycle. Recently the angle of the sun has changed and there is more intense sunlight and I am hypersensitive to the sun and heat. I wonder if this triggered the extreme sleepiness. I even thought that I have narcoplepsy too. Are people who have fibro more sensitive to the light? I have been all my life. Right now I am not sleeping as much as I did but I do need alot of naps. It’s like I have no energy at all. I hope there is an answer out there because I do not know what to do. Any suggestions? I would like to show my support to all the people who have this disabling disease because I know how much they suffer and I want to say I believe you because no one has said it to me. Take Care, God bless this website!

May 15, 2009 at 9:35 pm
(5) Adrienne - Your Guide to FMS & ME/CFS says:

Helen,

Definitely talk to your doctor about narcolepsy, as well as ME/CFS. Consider whether your symptoms seem to be connected to anything dietary as well, like mine are.

As far as the sunlight goes, yes, we do tend to be more sensitive to light and heat, but I don’t know how more sunlight could make you tired. Sunlight is supposed to trigger our brains to produce serotonin, which makes us feel awake and alert. Perhaps your serotonin levels are extremely low? Here’s an article with more information on that for you:

Low Serotonin: Symptoms & Treatments

May 17, 2009 at 3:19 pm
(6) soleil says:

Sounds like familiar symptoms. I also got tested for celiac and it was negative, but I do believe all grains affect me negatively. My head is much clearer on a protein and veggie diet. It is hard to follow, but I feel so much better avoiding all grains, most fruit, and all processed foods or sweets and just eating protein and veggies and a small amount of butter/oil.

May 20, 2009 at 4:31 am
(7) Valetudinarian says:

I have been wondering if my symptoms have been related to or some variant of Narcolepsy for a long time!!!! I DO NOT have cataplexy where collapse into a sleep. That would be too easy! Ha HA! Interestingly, my mother and my brother are known for drifting off during conversations and falling asleep while you are talking to them. My mother starts drinking a cup of coffee while sitting in a comfee chair only to find hours later that she has a big coffe stain on her carpet where the coffee mud fell out of her hand. Not exactly Narccolepsy because of the NO CATAPLEXY….BUT! I WONDER!!!!My grandfather, my mother’s father, would do exactly the same thing. We would all be visiting and next thing you knew his head would drift down and he’d be out. He’d wake up a few minutes later or when we needed him. Sorry, just because ther is NO CATAPLEXY it must be related to narcolepsy. It is an uncontrollable urge to fall asleep in certain situations. As far as I know they never fell asleep driving,

I struggle to stay awake like them. my sleep schedule is so off that if you came by at 8:30am I would probably fall asleep. I often fall asleep while watching cartoons with my kids. I am a little anxious about falling asleep alone with my kids so I think adrennaline kicks in. I am a NUT about falling asleep while driving: I would just never allow myself. I do not alow myself to daydream and keep my eyes on the road. I am all business driving. I was in one wreck where I was very very sleepy. I was stopped in traffic and looking some activity to my right and guess I was not holding my break tightly enough. I drifted into the car in front of me! No to much damage, but I didn’t
realize it was happening til BOOM!

As far as I can think….that is how I think my sleep problems ARE related to narcolepsy. I think my family happens to have some variant of it. Anyone know?? I say thumgs up to the article.
Where I have undxd Narcolepy, a variant of it (though Dr.’s insist there is non) or perhaps ADD (which might really be the brain fog). A drug called Provigil helped. I still felt sleep and somewhat tired, but did not feel the OVERWHELMING URGE to go back to bed.

Unfortuntaely, my insurance company does not cover Provigil for the diagnoses I have. Substituted are a generic form of dexedrine…which I believe is much less safe. Lets be honest it is pretty much an upper…an amphetamine salt. It does help and lasts about 4 hours.

May 20, 2009 at 12:41 pm
(8) Adrienne - Your Guide to Fibromyalgia & ME/CFS says:

Valetudinarian,

Wow, it certainly sounds like you and several relatives should see a sleep specialist!

A couple of things: first, you don’t need to have cataplexy to be diagnosed with narcolepsy. It makes a diagnosis easier, but it’s not essential. Also, no all narcoleptics have the sleep attacks. I’d recommend seeing someone who’s better able to recognize non-typical narcolepsy symptoms, since it is a very difficult diagnosis.

Second, cataplexy is different from the sleep attacks associated with narcolepsy. It’s actually a loss of muscle tone — basically, you can’t move at all, but you’re perfectly conscious. If you don’t know what’s going it, it’s really scary because one minute you’re fine and the next minute you’re on the floor paralyzed! When it happens to me I’ll try really hard to move and only get a twitch. I’m fortunate that I feel the weakness coming on in my legs and can generally lay down before I collapse.

Best of luck to you!

June 9, 2009 at 1:22 am
(9) sleepygirl says:

I was diagnosed w/ narcolepsy and periodic limb disorder 3 yrs ago. I don’t have cataplexy. I have been on various stimulants and sleeping pills all of which work for bit and then I back to being tired. This yr I finally asked if it could be cfs and the dr ran more tests. Everything came back ok, i guess, except my ana. So I was my dr. wants me to see a rheumatologist.

July 31, 2010 at 12:55 pm
(10) Kathy says:

I have done this (Sleep Paralysis) several times & had no clue what it was. I could hear others talking around me but couldn’t talk or open my eyes. I will definitely talk to my doctor about this.

Thank you so much for what you do here.

August 25, 2010 at 9:03 pm
(11) Tired says:

I have cold induced pain, along with muscle pain/joint pain in my extremities and severe daytime fatigue/sleepiness and insomnia. I was originally diagnosed with Fibromyalgia and CFS, which is in my opinion, overly diagnosed by doctors that either don’t want to take the time to find out what their patients actually have or doctors that don’t want their patients to get better bc everyone knows sick people are the reason why doctors have so much money. Anyways, I kept pushing after diagnosed with fibromyalgia and CFS and finally got a sleep study done and was diagnosed with severe narcolepsy, my ANA is high, along with other abnormal tests. My point is, just bc you’re fatigued and have muscle pain that gets worse in the winter, doesn’t mean you have to accept your diagnosis of fibromyalgia and/or CFS. There’s a lot of diseases out there that resemble Fibromyalgia. Has anyone heard of Polymyalgia? There’s a cure for that disease and it’s identical to fibromyalgia. If you actually study fibromyalgia, it has every symptom in the book and you can have some or all of the symptoms. It’s not a real disease, it’s something doctors diagnose patients with until they can find out the real reason for their illness. Doctors are shady…. The FDA didn’t approve Lyrica or Cymbalta for fibromyalgia, they approved Lyrica for seizures and Cymbalta for depression. My doctor used to tell me that if fibromyalgia wasn’t real, the FDA wouldn’t approve medication for it. It helps with “fibromyalgia” symptoms, but was originally approved for seizures/depression. For all of you sick people out there, you just have to find a doctor that cares and believes in the oath he took when he became a doctor. Good luck!

Guide Response: While you’re certainly entitled to your own opinion, I wanted to point out a few things. First, your doctor should have done an ANA before diagnosing you — it’s standard protocol. While it’s true that many diseases resemble fibromyalgia, most of them have biological markers that need to be tested for in the diagnostic process. A host of evidence does show that fibromyalgia is “real” — fMRI verifies the pain, and dozens of studies show that fibro has distinct differences from similar conditions. The example you used — polymyalgia — only shares a few symptoms with fibromyalgia and has distinct difference involving inflammation (diagnosed by a high sed rate) and pain limited to a few areas. Also, Lyrica and Cymbalta were originally approved for other uses, but they’re also FDA approved specifically for fibromyalgia. This happens with many drugs: they’re approved for one use and then later approved for others, and your doctor is right that the FDA wouldn’t approve drugs for something that wasn’t real. I agree that some doctors use these diagnoses improperly when they can’t figure out what’s going on, leading to misdiagnosis. However, at least as many doctors under diagnose fibromyalgia and chronic fatigue syndrome because they don’t understand them. ~Adrienne

September 13, 2010 at 4:11 pm
(12) Tired says:

Adrienne,
Thanks for responding to my post, but I have a few questions for you. How does fibromyalgia pain show up on a MRI? I don’t know of any MRI that shows pain. I have always had a high sedrate, yet I was still diagnosed with fibromyalgia. Only after I went to another doctor, did she diagnose me with Polymyalgia and narcolepsy. I have a moderately increasing ANA and protein in my urine, and was placed on cortisolsteroids, but was told I didn’t have Lupus, Scleroderma, etc…from my original doctor. Polymyalgia is very similar to “fibromyalgia”. You have pain in your extremities so much that the pain radiates everywhere and it’s hard to tell that you don’t have muscle pain in your torso area.

September 13, 2010 at 4:19 pm
(13) Tired says:

Adrienne,
My computer started messing up while I was typing my last message. Thanks again for your imput and I’m not trying to argue and you made some great points, but I still don’t know of any MRI’s that can show pain and if there is one, that would be wonderful…just show me the way:). I’m just frustrated bc I’ve been really sick for so long and I have seen so many doctors. I have a lot of abnormal test results and it seems like I can’t find a doctor who will look at everything and say here’s what you have. I got really sick basically overnight and I guess I can’t believe I have 8 different diseases. I feel like I have one disease, that’s possible a rare disease and no doctor can figure it out.
Thanks again,
T

September 28, 2010 at 1:03 pm
(14) Adrienne Dellwo says:

Pain doesn’t show up on a regular MRI — it takes a functional MRI (fMRI) to see it. This is a test that’s generally only used in research, not in clinical settings.

Your high sed rate should have prompted your doctor to look further for the cause of your pain. It’s certainly possible to have an inflammatory condition like polymyalgia along with fibromyalgia, but fibromyalgia shouldn’t be the primary diagnosis. It’s also nearly impossible to diagnose these two conditions simultaneously because in fibromyalgia, pain has to originate from an unknown source. If you have untreated pain from inflammation, treatment needs to be attempted for a valid diagnosis.

I do agree with you that some cases of fibromyalgia are misdiagnosed, especially by frustrated doctors who can’t figure out what’s going on with a patient. Your case appears to be a classic case of that — it’s really too bad that your first doctor didn’t realize your sed rate was the tip off that something else was going on.

I’m glad you were able to get an accurate diagnosis eventually so you could get proper treatment. I know first hand how miserable narcolepsy can be!

I used to wonder whether it was possible for me to really have multiple illnesses, but what I believe is going on in many cases is that there’s an underlying dysfunction in the body that medical science doesn’t yet understand, and it leads to problems that are currently classified as different conditions. If they do someday identify that type of dysfunction, we may see our multiple diagnoses re-classified as parts of the one problem.

February 5, 2011 at 11:12 am
(15) PGreene says:

My husband was diagnosed with Narcolepsy at the age of 36.
I insisted that he get checked for something because he was always falling asleep. The final straw was when he almost went through a four-way stop because he had fallen asleep. Blessed, I was with him, screamed and woke him up. I did not know much about narcolepsy until we saw a sleep disorder doctor. My husband told the doctor he always fell asleep in school and while in basic training in the Air Force he always fell asleep and therefore had to stand in class (as a punishment) and would fall asleep while standing. His sleep studies showed he had Sleep Apnea practically off the charts (I knew this but was not able to convince him to be checked for it) and Narcolepsy just as bad. He so far has never experienced cataplexy. The doctor says this can come on at anytime or may never. The doctor decided to test him for the Narcolepsy gene. This came back positive which means his children would have a 50% chance of carrying the disease and their children would have a 25% chance and so on, unless one of them carry the gene. The problem is the DNA test is so expensive that insurance no longer pays for it.

February 5, 2011 at 11:15 am
(16) PGreene says:

contnued:
We have two boys eight years apart and with my oldest I was always told he was ADHD in the elementary years. I had him tested and he was not. By highschool I was getting phone calls regularly saying “Your son won’t stay awake in class”. I took him to the sleep doctor and he had a sleep study done which showed he also had Narcolepsy. Then my youngest son hit elementary school and I started hearing the same things about him (ADHD stuff) I refused to have him tested. At a teacher conference a pair of teachers told me they were concerned for my son and they did not think he was ADHD. They did think something was wrong but did not know what. He just could not stay focused and seemed to be in La,La land. All of a sudden lights went off and this was sounding all too familar. So, I took him to the sleep doctor (he was 8). The doctor did feel he was suffering with
Narcolepsy also, but it is very hard to diagnose before puberty. Therefore I was told just to keep an eye on him. Things continued to get worse, so by fifth grade I took him back to the sleep doctor. You see in children, Narcolepsy manifests itself as ADHD. Children get tired and do not want to nap or go to sleep so they rev themselves up. The doctor said we could try him on Ritalin. In a ADHD person Ritalin slows them down in a Narcoleptic person it speeds them up.

February 5, 2011 at 11:18 am
(17) PGreene says:

continued:
So, now all my guys are on Ritalin.
My husband experienced his first heart-attack at the age of 48. When his cardiologist found out he had been on Ritalin for over ten years, he immediately had it stopped and said it could have contributed to his heart attack. Both my boys had experinced strong heart palpitations and irregular heart rhytms. They were all taken off Ritalin and put on Provigil, which seemed to work better and a little longer than the Ritalin. The problem with Provigil is the cost. It is very expensive and if the insurance companies cover it, it is very little they cover. Times that by 3. A new drug has come out very similar to Provigil, called Nuvigil and is somewhat cheaper but still too expensive. These drugs only seem to have about 5 to 6 hours of effectiveness. My husband has to take one in the morning and one in the afternoon. My oldest son should do it this way too, but only takes one in the morning. This drug seems to be working the best for my guys. I also want to say I had my boys put on a 504 plan in school to protect their rights. Many teachers are unfamilar with Narcolepsy and don’t care to understand it. The 504 plan makes the teachers listen according to the ADA.

July 22, 2011 at 8:23 pm
(18) Brenda says:

Has anyone ever had any relationship with shingles or Valtrex. Though I have always had periods of total “must sleep now” it was cured by a 5-15 minute power naps. It might go on a few weeks and then I went on with life where I wouldn’t need afternoon naps. I got mono in my 30th (I was the mother of 5 small children so I had to perserve) In 2005 at age 50 I started waking up tired even though I was always an annoying power house.

It wasn’t just incredible unrelenting exhaustion. I became week after being an avid hiker for years. I also had panic attacks of depression that lasted a few hours. A year later I got shingles and then again 6 months later and then again and again. The dermotologist put me on Valtrex and everything is “almost” normal as long as I take a Valtrex everyday.

Anyone have a similar experience with shingles?

September 6, 2011 at 3:29 pm
(19) Parrish says:

I’ve been diagnosed with all 3 of these:
First Fibromyalgia due to pain complaints and had “touch points” tested and comfirmed- twice!
Secondly, CFS, due to complaing of excessive daytime sleepiness.
Third, finally had 3 sleep studies done to confirm Narcolepsy.
I believe they all tie together.
I suggest one keep a journal and write down everything your body does and feels.
I did have to ask the fam Dr. to see the neuro for sleep studies.
I believe it is an adrenal issue which knocks everything off whack!
Check out Dr. Rodger Murphree on Facebook. His free video seminars will educate one greatly! (no I don’t have any ties to him–just appreciate what he’s doing:)

February 19, 2012 at 12:42 am
(20) Joseph Sweet says:

I have all of these symptoms. The chronic daytime sleepiness, instant, uncontrollably falling asleep, no matter what I’m doing. Sleep or waking paralysis, the hallucinations, cataplexy. I have to limit my emotions to whatever extent is possible. I get angry or stressed or even laugh at something and I collapse. I also limit the amount of time I spend in public because it has become so bad that I’m collapsing a couple to a few times a day. If it happens more than twice, I have to give up and limit my activity because there’s really no hope of getting through the day without falling and injuring myself. I have been operating under the belief that it was Narcolepsy, as a doctor suggested it a couple of years ago and all of the symptoms possible for chronic narcolepsy fit. I couldn’t imagine once doing some reading up on it that it could be anything else. Finally got a sleep study a week or so ago now. And they said it’s not narcolepsy. I felt so lost after dealing with this my whole life without any answers and then suddenly thinking we had the diagnosis down, only to end up right back at square one with no answers once more. I found your blog after finally doing a search tonight for things with similar or the same symptoms as narcolepsy. Should I suggest the CFS thing to my doctor? I don’t have much faith in local doctors, never have, but it blows my mind that I’m 34 and have been dealing with this ever worsening problem since I was a kid and just in the last two years does a doctor come up with something that sounds promising. Yet CFS hasn’t ever come up either.

February 28, 2013 at 4:19 am
(21) Rainbow says:

I was hit with chronic fatigue about 3 years ago. Then 1 years ago put on prednisone presumably for polymyalgia. Then it’s not PM and being investigated for narcelepsy. Have taken provigil for over a year and a half. The chronic pain is treated with lyrica. I want my life back but wonder how I can do it. My health care professionals, physio, pdoc, counsellor all think I am ok but only when I see them…the alternate days I sleep for 3 hours, so how does one function, not to mention that my memory is impaired and can barely speak or stand at times, never at appointment times!

March 31, 2013 at 11:53 am
(22) Phyllis says:

I am looking for a venue which talks about narcolepsy, there is not much going on here can someone direct me to where there is? I would like to put forward an idea I just had myself, that is: could narcolepsy be related to post traumatic stress syndrom where the brain when stressed, reacts in a way to put you to sleep as a way of escaping the stress?

February 25, 2014 at 7:14 pm
(23) Suzy says:

I know I’m a few years behind, but thanks for this blog.
I’ve been sick for 11 years and it wasn’t until last year that I had any form of diagnosis. Then, in the space of about 5 months I was told I have CFS, narcolepsy and hypermobility. Given that all 3 present overlapping symptoms I’ve been left confused and unsure of what to label my illness as. If I say all 3 then it really freaks people out. Even in support forums I sometimes feel like an imposter as I don’t fit neatly into one diagnosis where as everyone else just states they have that one illness. I guess I see myself as only half having each illness.
Anyway – my point is – thank you for helping me realise I’m not alone in having overlapping problems.

February 26, 2014 at 11:43 pm
(24) Tamara says:

I have narcolepsy with cataplexy, sleep paralysis, hallucinations and status cataplecticus. I have to tell you, your description of cataplexy is not great. It IS sudden loss of muscle control. When a person(normal sleeper) starts dreaming there bodies go limp so they don’t harm themselves and that is what happens when a person has one if there cataplectic triggers. Mine are sun, perfume, skunk, vinegar, scared, laughing, dead animals,sex, being sick, period etc. There isn’t really much I’m aloud to do alone. I was born with narcolepsy but when I developed severe cataplexy I was diagnosed instantly and went for sleep tests. Narcolepsy has to be diagnosed with a sleep test like for sleep apnea. If you belie you have it, fight to get a sleep test and that way you can hopefully get treatment to help a bit. But honestly. The meds are expensive, dirty and you build up a tolerance. Best of luck

March 1, 2014 at 2:05 am
(25) Lindsey says:

I have had Fibromyalgia for many years. I also am BiPolar. Recently, I have found myself dozing off for a short period of time during the day. This can happen many times during a day. I also have noticed when I do wake up I have a tremendous feeling of anxiety. This only lasts less than one minute. I am not taking any prescriptions. I am on Social Security Disabilty, and can manage all that is going on, since I am not working ouside of the home. In the past, I have had night terrors, and when arousing from one of these terrors, I have found that I cannot breathe.

Just thought these sleeping issues could be related to the Fibro. Every symptom that I suffer from seems to be connected to this.

Anyone relate to this? By-the-way, I am sixty years of age, and I am addicted to all mind altering chemicals, so I know that I can’t take the medications they generally prescribe for Narcolepsy.

Thank you, Lindsey

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