Skip to Accessibility Tools Skip to Content Skip to Footer

Insomnia – Physically Fatigued but Mentally Wide Awake

Fatigue is one of the most common and hated symptoms of multiple sclerosis (MS) affecting around 80% of patients (according to the National Multiple Sclerosis Society). It has become such a constant and debilitating part of my life that I honestly can not remember what it feels like to not have it; I can remember being able to go-go-go before MS but I can’t really remember how it physically felt to not have the weight of fatigue on my back from the moment I wake up till the moment I fall asleep. In the past, I have talked about the different types of fatigue (such as lassitude) and the possible causes but what I want to focus on today is one of my least favorite predicaments; feeling horribly fatigued all day and then spending the night as an insomniac.

If you have MS I am certain you have found yourself in this very situation; after a full night of sleep you wake up and already feel horribly fatigued. You spend the day pushing through it while wondering why you feel so tired after sleeping so well. Towards the end of the day you give up on trying to fight it and decide it’s time to go to bed even though it’s a little early; it is taking too much effort to even just lift your arm to rub the eyes that you can’t even keep open anymore! Every part of you feels dead! Then you crawl into bed and let out a sigh of relief; you can finally let yourself just slip away into the abyss of sleep where maybe a nice dream will fill your head for the night. But apparently your brain did not get the memo; even though you feel like you lack the energy to even turn from side to side, move a leg or move an arm your mind starts racing!

All sorts of thoughts consume you and instead of the small flame that is your consciousness slowly dying out it burst into a wildfire of random thoughts that keep you just on the edge of still being awake and falling asleep. Thoughts ranging from “I forgot to take care of the phone bill” to “what was that guy’s name again? George? Jeff? James? It started with a ‘j’ sound… Gerald?” to completely random thoughts like “what was the name of that star they were talking about on that science show? Something Centauri… Alpha? Naw, it was something else. I should look it up on my phone so it doesn’t bug me all night – but I don’t want to get up and turn on the light because then I might have trouble sleeping, plus I am just too tired to get myself out of bed… I’ll just look it up tomorrow” and for a split second everything grows quiet. Finally! But then your insomnia fueled thoughts sneak back in – “how far was that star from Earth? 4.25 light years? No, 4.24… Why do I even care? Wait, light years are weird, it sounds like a unit of time but it’s actually a unit of distance! But how far is a light year? Millions of miles? Billions? No, billions would be too far – or would it? Wait, I am doing it again! Why does this matter? I honestly don’t even care! Oh my gosh! Just shut up brain, go to sleep!”

But the thoughts don’t stop and eventually you open your eyes to look at the clock only to see the red glow of digits informing you that you have been lying there listening to your random thoughts for hours. How? How can you still be awake? You are just so exhausted! Every part of your body has given up and shut down but your brain is still ticking away. At this point, you wonder if you should get up and just take something to help your brain turn off but it’s so late that if you did take something it would last into the morning and there is a chance that instead of sleeping in you will still wake up and just feel groggy all day. But suppose that was not the case, suppose you actually could sleep in and get your full 8 hours? Well, now your sleep schedule is all screwed up so when the time that you normally go to bed comes you are still full of mental energy and can’t sleep! You just can’t win! It’s like the energy level of your brain and the energy level of your body are never on the same page!

Are you often faced with the problem of being physically fatigued but mentally wide awake? How do you deal with the combination of fatigue and insomnia?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • eevie010166
    3 years ago

    The exact same thing happens to me. Almost every single night. There have actually been times where I go without sleep for 48 hours straight, then I finally crash and sleep for 12-15 hours straight. I’ve tried over the counter sleep aids, my neurologist prescribed me different sleep aids that ended up having the opposite intended effect on me, I’ve tried meditation, staying off my computer, not having the tv on – everything the “experts” tell you to do for good sleep hygiene. Nothing works for me – I just can’t win. For years, my MRI’s have shown a very small pineal gland cyst. Could that be having a negative effect on my sleep/wake cycle? I learned that the pineal gland secretes one hormone — melatonin, which helps control your circadian rhythm (sleep/wake patterns). I’ve mentioned this to my primary care doctor who agreed that this could be why I’m having insomnia. I also mentioned it to my neurologist who also agreed. But there’s nothing they can do about it. I’m basically screwed.

  • Demyllynn
    2 years ago

    I have had the exact same symptoms but my neurologist suggested melatonin. I take 2.5 mg . Gets me very cozy and sleepy! I just don’t want to take it every night.

  • Matt Allen G author
    3 years ago

    Since you brought up melatonin and seem to perfectly understand it, have you started taking it? You are supposed to take it for about a couple weeks right at the time you want to start going to bed. This helps train your brain that THAT time is when IT should be producing melatonin. If you just randomly take it in hopes that it will help you sleep it will not work. It does not INDUCE sleep it helps train your brain WHEN it should start trying to sleep. This training aspect is why it works so well for things like Shift Work Sleep Disorder (SWSD). Also, 48 hours? Wow. TECHNICALLY I have done that once, it was when I was flying to/from Ireland so because of my odd flight time it was just easier to commit to being awake that long in order to fall back into my normal schedule haha so technically…

  • Julie
    3 years ago

    “Yeah, I’m tired too”.
    OMG if one more person says that to me I will scream! I don’t even bother anymore explaining the difference. Do we all have the same kind of brain?? I have the same thought pattern that runs thru my brain when trying to fall asleep. The dumbest things run thru my mind. I lay there and wonder if and why I care about the random thoughts.

    Fortunately, I have a Kindle and keep piling the books into it. A few thousand at this point. I will probably be able to read all of them. I have started dozing off while reading. A couple of nights ago I woke up wondering what was poking my butt. I reached down and found my brand new glasses, bent out of shape. I have no idea how they got underneath me.

    Again, I’m going on with random things. I’m glad I see that I’m not alone in this. Not that I’m glad you can’t sleep either….well you know what I mean.

  • Matt Allen G author
    3 years ago

    I know what you mean haha 😀 but people need to think of it like this; what someone with MS physically feels when they touch something might be different. Someone with MS may feel things that are not even there. Things LOOK differently to us. SOUND differently. So, in keeping true to that theme, we SLEEP differently, so when “you” can’t sleep either? IT IS DIFFERENT because “you” do not sleep the way I/we do!

  • mstry
    3 years ago

    I was diagnosed with RRMS on 10-21-01. Fatigue, insomnia, optic neuritis, losing all feeling on my left side for a week while neurologists told me that MS never attacks just one side of the body. All the experts came out of the woodwork to test me for every disease imaginable because my case of MS was not typical. Months of testing. Months of being told no one could find anything wrong with me. Finally armed with MRI evidence and the lumbar puncture results, I received a diagnosis that no one wants to hear. I had horrible side effects from the steroids to treat flare ups to the useless pain medications and muscle relaxants. Finally, I got to use a tens unit for my back pain and it worked well while also using lidocaine patches for sleeping. But then my insurance stopped covering the tens unit and claimed that the lidocaine couldn’t possibly be helping with Ms pain so they stopped covering those, too. Now I take Vyvanse for fatigue and trazadone to fall asleep.and I just received a therapeutic cannabis card for my state so I can finally treat my pain. Sixteen years to finally have a treatment plan. I also inject copaxone three days a week to ward off the progression but I have more lesions on my brain every time we check. They are just not all active so I’m very lucky these days. Don’t feel lucky. I fight this on my own. My husband doesn’t believe in MS. So that makes managing my symptoms hard. My parents come help out when I can’t walk and he just ignores it all. I have become very depressed lately and I don’t know how much longer I can live like this. Hopefully once I go to a dispensary and get my pain under control my spirits will be up again.

  • Matt Allen G author
    3 years ago

    Oh, AND since I started visiting a dispensary I have been tapering off my antidepressants for the first time since I was 18 – took my last pill TODAY actually

  • Matt Allen G author
    3 years ago

    I have been trying so hard to get something other than Nuvigil/Provigil. I was on Ritalin for a while but that wore off. My neurologist won’t prescribe his patients Adderall so when I see him tomorrow I am going to really try for Vyvanse even though it is kind of similar… Since I found a dispensary I have not touched any opioids or prescription pain aids so hopefully that will do the trick for you!

  • DonnaFA moderator
    3 years ago

    Hi mstry, I’m so sorry to hear that you have had such a long and frustrating journey, and I’m glad to hear that you finally have a concrete treatment plan and a way forward.

    It’s definitely difficult when your support system at home is limited. Please know that you’re not alone and that we’re always here to share support or just to chat. Have you also visited our Facebook page? You may also want to visit MS Peer Connection for information on connecting with peers and peer support in your area.

    If you feel you are in imminent danger, please reach out to the Lifeline chat or call 1-800-273-8255. Thanks for being here, and please don’t hesitate to reach us if you need support or just to chat. Please remember that you are not alone and that you are cared for and valued. – Warmly, Donna (Mu;tipleSclerosis.net team)

  • Poll