I always found it interesting that you cannot sleep when you have fatigue. It almost seems like an Oxymoron. Sometimes, with Fibro I can hardly stay awake. Other times, I am anxious and hyper. But, some nights for I sleep very well for several nights in a row and then the before mentioned things kick in again. I take Xanax for sleep, but on those other nights, it is like I wasted the meds. All I can say to myself is welcome to the world of Fibromyalgia you should be use to it by now. Probably never???

Here severe fibro and EDS going for narcolepsy test one point off paper test

Gentle hugs!!!’ I’m 55 yrs young and I have had Fibromyalgia since 2012 I can’t take Lyrica causes me to swell I’m just wondering are all of us that has this are we all overweight I so need to lose some weight my dr told me my Fibromyalgia would get better if I lost weight have you ever heard this before ??

Hi!! Thank you both for your replies. It feels great just knowing that you took the time to reply to me :)

I have been on Adderall, but the side effects were so bad I had to stop. Narcolepsy diagnosis about 2.5 years ago, Fibro diagnosis 5 years ago. After narcolepsy confirmed, I tried adderall, concerta, high dose ritalin, provigil, and a bunch of combinations/dose changes. The side effects were terrible. I would snap at my kids for no reason, very moody and emotional- not just when crashing, and feeling like a big ball of nerves 24/7.

My current narcolepsy regimen is Nuvigil daily as well Ritalin 10 mg, 1 1/2 hrs before I need to wake up.

I also have depression and anxiety, like most of us :/ I haven’t been able to handle any depression meds due to side effects, and I really don’t want to be on an antidepressant anyway. I take klonopin for my anxiety, but a very low dose.
I tried Belsomra, and oh. My. Gosh. It was the craziest night I’ve ever had. It was like a haze, with visual/auditory hallucinations and being up all night doing things around the house, but not awake, somewhere between sleep and wake. It was all in a weird wake-sleep fog, stuck in the middle. I had the worst headache of my life for two days afterward.

Oh yes those weird nights, I’ve always wondered, why do those random nights happen? Like I’m super tired(I’m always super tired), can’t wait to go to sleep, do my normal routine, but then BAM I wake up around 1-3 a.m. and it’s a weird “why am I awake, my brain feels odd, my legs hurt like heck, and I can’t even think about going to sleep again” anxious wakefulness. Since I have narcolepsy, I can’t take a lot of the klonopin, I’ll never get up the next day, and I have two school age kiddos.

I have tried lyrica, tramadol, cymbalta, ibuprofen, Tylenol, and some natural supplements for the Fibro, all with no improvement or side effects so bad I had to stop the meds.

It’s just this loop I get stuck into....and some days are just SO hard to deal with. Constant exhaustion and all over body pain, poor sleep but always tired, leading to frustration, increased anxiety and depression. I’ve been in a funk for a couple of weeks where I just feel absolutely terrible all day every day. I push through, I have to for my kids, but I just want to snap out of it. I cannot remember one day where I have woke up and felt GOOD, having symptoms of Fibro and narcolepsy for almost 20 years.

Just knowing there is a place like this where other real people understand- it’s great!
Your replies have definitely lifted my spirits, thank you!
Have a Blessed day :)

I have the cataplexy and it's not rare really if your fatigue is that severe. My doctor actually ok'd the use of adderall during the day to help me stay awake. It depends on how open minded your doctor is. Plus adderall has its own side effects you have to deal be able to accept. Like how you crash at the end of the day. So it actually regulated my sleep in a way.
There are meds to help with this like Belsomra. Look up the history of it. Like how it was made. It is supposed to help reduce the amount of narcoleptic attacks and cataplexy attacks too. I use it for sleep and have less fatigue during the day. It works with the orexins in your brain. Give it a shot