Fatigue

Fatigue: how many of you can get through the next few paragraphs without nodding off? Probably not this guy. When I start sharing all the wonderful symptoms that MS throws my way, so many people want to skip over fatigue and go right to the numbness. Most folks have a pretty good idea of what the word "fatigue" means and how it feels in general. But for me, using that word to describe the kind of exhaustion I experience doesn’t seem specific or accurate enough. When that tired sets in, I can’t just wait it out. It's not like being worn out from a workout, where you can recover with a few hours of rest.

While I’ve learned that certain things can make the tired come on strong, it can be hard to predict when it’s going to slap me in the face next. A trip to the grocery store, or just a day out with the fam can be pretty good precursors to having a day of the sleeps. Sometimes for no good reason, I will nod off at the dinner table. Once those eyelids get heavy, it’s lights out. There are even days when I think my fatigue might border on narcolepsy.

The tiredness never comes on during bedtime; oh no, that would be way too easy. It always comes on when I'm driving or trying to enjoy my son’s soccer game. I often think I can power through it. But if I don't make it to the couch, you will see me slumped forward and most likely drooling in my lap. Now that's tired. This can happen just about any time, anywhere. I have even fallen asleep mid- conversation at a friend’s house.  

    

(Photo credit: Meghann Prouse, Indie Photographer)

Most people understand that physical activity will cause fatigue. If we go for a walk, I will be wiped out for a day, maybe two. Even hopping in the shower will wipe me out. But the harder part to explain is how emotional stress can knock me down just as much. Being nervous, upset, or really stoked about something can really take it out of me. So between the physical act of doing something, and the emotional stress of just about anything, I am pretty much always tired. That isn't even counting the days where just sitting, doing absolutely nothing, kicks my ass.

Even though sleeping doesn't necessarily make the tiredness go away, it's something I do a lot of. That is one benefit to being on disability; there aren't many, but I will take this one. The doc also advised me to get brain rest (much like meditation). Basically, I need to find a quiet place away from the computer and phone, and just be. I think that’s good for anyone though, MS or not.

I don't speak for all people with MS when it comes to fatigue (since we all have different things that trigger it), but our fatigue is very real, very hard to explain and very frustrating. I only fell asleep twice four times while writing this...not too bad. 

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Kellen

Kellen Prouse

Born and raised in the Pacific Northwest. Disabled in 2010 due to progressive multiple sclerosis. I have started the Wheels & Red project with my amazing wife Meg. Wheels & Red is a way for us to share our story with the world. No matter what you are going through you can always find and adventure.

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    121 Comments

  • Shannon   May 1, 2015 12:11 PM
    Definitly can relate. I have 2 kids to raise pretty much on my own as my spouse works out of town and only gets home for 4 days every 10 days.
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    marshina  May 1, 2015 12:15 PM
    I wonder if and what medications you are on?
  • Michele   May 1, 2015 12:17 PM
    This is the hardest part about having MS. No one understands the fatigue that just doesn't let up.
  • Brittany   May 1, 2015 12:17 PM
    So well said. The word fatigue doesn't do the feeling justice. Best of luck to you.
  • Becca Gwin   May 1, 2015 12:20 PM
    This spoke so true to me. Thank you for sharing your experience. It makes me feel better knowing that I am not the only person experiencing this.
  • bobbi   May 1, 2015 12:22 PM
    My fatigue is a lot like this. Here lately I've even been nodding off while trying to eat. And you're right about most people not getting it. I'm even on a med that's supposed to help with the fatigue. It doesn't. It's nice to know I'm not the only one!
  • Janet Mailer   May 1, 2015 12:22 PM
    My sister has MS and the fatigue is taking away a great deal of every day. I sent her this story in hopes she might just give this a try. When I read your story the Lord placed it on my heart to share this with you. If you would please email me, I will be happy to reply with the information.
  • Nell   May 1, 2015 12:25 PM
    i can relate to most of the fatigue issues. But I just keep moving until I know I really need to relax. I guess I refuse to let it take over.
  • Annie   May 1, 2015 12:27 PM
    Very well written! I experience the exact same things, even on medication. :/
    It's so difficult to get others to understand that even extreme emotions can cause my body to just shut down. While I hate that you're suffering too, it's wonderful to have articles like this to share with family & friends so they see others experience what I do & it is very real.
    Thank you so much for sharing this! :)
  • Antje Vilela   May 1, 2015 12:29 PM
    Thank you for your post. I have been diagnosed with progressive regressive MS in 2000. I just recently have applied for disability. Fatigue has been a constant companion. I have been drinking a lot of coffee and red bull to stay awake, it works somehow but I always feel like I have not slept the entire night or for couple days.
  • Emily West   May 1, 2015 12:30 PM
    No one ever wants to hear this, and I always get negative comments when I mention it, but boy I wish someone had told me this 12 years ago when my MS first came on: 6 years ago I gave up dairy, and within a few months all my fatigue was gone. It comes back with false exacerbations, like when I have a cold or a UTI, but otherwise I am fatigue free. I have PPMS, though, so results may vary. It's really worth a try.
  • Annette   May 1, 2015 12:31 PM
    I am not along;) Fatigue is my greatest symptom. I was able to be up and about, even went back to school, thanks to the medication, Modafinal. Jan 2015, insurance refused to cover prescription and had to drop classes. New med speeds up mind but body just not moving. I too am waiting to get on with living and being active
  • Jessica Arnold   May 1, 2015 12:31 PM
    I can 150% relate to this. I've always been a happy go lucky kind of girl until the fatigue started and then the optic neuritis hit me. My eye doctor is the one who had to tell me I had MS. I would fall asleep at work a lot. If I didnt, I couldn't do anything including going to the bathroom. It still comes on quick and with a vengeance. If I cry from the pain or just because I hate this disease and what it's taken from me. I'm down for at least a day. Fatigue is in my top 3 major issues that no one who doesn't have MS will ever know.
  • Steve   May 1, 2015 12:34 PM
    I have a limited amount of gas in my tank each day. Some times it's half full (I never fill up), sometimes my gas light is on from the get go. But despite that, I try to live each day to the fullest. I figure if I use all may gas each day, then that is the fullest experience for me.
  • Cristian   May 1, 2015 12:36 PM
    hi all i have same simtoms betwen 4 and 7 pm i feel heavy like a rock and seepy after 8 im fresh again dont know why
  • jodi allbritton   May 1, 2015 12:36 PM
    I take modifinal. for fatigue but if I take it when I wake up, between 6-7am, I'm wiped out by noon. I get frustrated when people say "you need more sleep" sometimes it takes too much effort just to lift my head from the pillow. MS related fatigue is definitely different than the everyday tiredness other people experience.
  • Steve   May 1, 2015 12:39 PM
    As someone with an advanced stage (9.5) of this disease, I frequently doze when intense thinking is needed. Playing Words with Friends iPad game, I'll be told by my wife I phased out a couple of times, but never before bed! Go figure.
  • Carol   May 1, 2015 12:42 PM
    Thank you, most people just don't understand fatigue with MS. Thank you
  • Lee Chalker   May 1, 2015 12:43 PM
    I can so relate. My wife and I have 4 kids. 12, 10, 6 and 6 months. I'm on disability and stay home with the baby and get the kids off to school, etc,etc...by the time she gets home everyday, I'm done in. I have relapsing remitting and though it's not that bad, yet, it's coming. Thank goodness for grandma. She comes to the rescue whenever I feel I'm about to "hit the wall" during the day.
  • Kris   May 1, 2015 12:45 PM
    THANK YOU for this, it is my reality...The words " tired" and "exhausted" hold little clarity, when it comes to how falling-down, asleep in my soup wiped out I am. Funny, I was just wondering about the possibility of Narcolepsy last week. At least I no longer feel alone...Sleep well.
  • The stories we share   May 1, 2015 12:52 PM
    Thanks for sharing your story. I think that more we share how with MS fatigue affects us the better educated people will be since this is one of the invisible symptioms in many ways. I have finally gotten many of my friends to understand when I say I have to have a day off to prepare and then another after a particularly busy day that I want to participate in a number or things that give me joy. Yesterday is that for me and although it was a superburb day it was extra long so it looks like I might two days to recooperate and get rested. TGIF and the weekend awaits:)
  • texasbling   May 1, 2015 12:54 PM
    I am not on anything now..I have 5 sutoimmune diseases that cause fatigue. .I cannot even begin to tell you how bad I feel..If anyone would like to posts suggestions on meds..pls do
  • Laura Confino   May 1, 2015 12:57 PM
    Thank you for sharing your experience with MS. I have been diagnosed with MS for 30 years now since the age of 19 and my family still doesn't get it when I say I'm MS fatigued/tired. It's too hard to articulate the feeling because they will never experience it like I do. Your explanation is the closest to what I experience, but my experience is still much stronger than that as I'm sure yours can be too. How does a person with MS find the words to explain what they're feeling so other people will really understand? I feel it can't be done. Sometimes I feel paranoid that people hint I'm "faking it" or exaggerating but I'm not! I'm going to re-post this and hope my friends and family read it and understand it's real and I'm not the only one. Thank you
  • Lisa Sailor   May 1, 2015 12:57 PM
    Like others that have commented I take Provigil. I only take it on the days when it is necessary for me to be alert and/or active for most of the day. I have been in a wheelchair with SPMS for the past 21 years. The use of this med has helped me be able to travel to Europe several times with my husband, help with my grandchildren and volunteer at the MS Society. Before using this med none of this would be possIble. I don't take it everyday because it causes me to not sleep very well if I take it two days in row, defeating the purpose of it to begin with! It won't be the answer for everyone and it's very expensive (my insurance did approve it) but worth looking into for fatigue. My fatigue is more debilitating than having to use a wheelchair. A very frustrating symptom to deal with because it is so life changing. A great article and gives good insight into this symptom that gets overlooked by doctors and is misunderstood by our friends and family.
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    amhaseley  May 1, 2015 12:59 PM
    Amen brother
  • Summer Clark   May 1, 2015 1:00 PM
    As I read this about fatigue & MS as I am sitting at a facility being monitored for six hours for the initial dose of Gilenya. I experienced the usual feeling of being hot & then freezing. I was busy doing things at first like organizing my coupons while standing but then I sat down in the recliner to make a list of things I needed to do & that's all it took. I fell asleep writing, then I tried looking & reading a magazine, nope I fell asleep again, couldn't tell you what it was about. I deal with this extreme chronic fatigue everyday which starts from the time I get up. Very scary especially when driving! I don't have a problem getting to sleep at night but after a few hours I wake up & then it's an on and off session of sleep for the rest of the night until it's time to get up for work. I couldn't tell you the last time I was able to sleep the whole night through. I also deal with chronic back pain which in my book is severe. I take pain medication daily in order to deal with the pain, it never takes the pain away only tolerable. I was diagnosed with MS 12 years ago & very lucky that I should not complain about this but it is very hard for others to understand especially my youngest daughter who is 6. She has all this energy & asks me to play Barbie's with her & it breaks my heart that I fall asleep while we are playing or if she is reading me a book. I have tried to explain it to her but I think she is too young to really understand!
  • Nathan Williams   May 1, 2015 1:09 PM
    I agree with you on this topic! Wiped out is not just a song, but a real feeling with MS. I have noticed taking a bunch of Coconut oil pills I have some good energy. Gets me through the 11am-3pm stretch.
    Just take time when needed and relax... We are in the MS ride together!
    Cheers
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    Constance56  May 1, 2015 1:20 PM
    I can surely relate!
  • Kate   May 1, 2015 1:22 PM
    I just wanted to say thanks for sharing about your fatigue. It's the best description I've read that is very like what I go through. Just the other night I was looking at something on my laptop when the pain from my glasses slamming into my face after falling asleep and landing on the keyboard woke me. It is beyond tough.
  • Mrs. Vann   May 1, 2015 1:24 PM
    I've experienced it while just sitting and while active. You are correct, the emotional activity (I guess I can call it stress) can also trigger the MS fatigue. I must actually sleep for more than a minute, usually a few hours or overnight to feel relief. It is a trip...
  • Kim   May 1, 2015 1:48 PM
    Fatigue is the pits but I have finally come up with a way to describe it to people that they seem to understand. I tell them it isn't like being tired. It is like an electrical appliance that is plugged in and working fine, when all of the sudden, the plug is pulled from the socket, the appliance just stops. No warning and no prediction at to how long it will last. You just have to hang out until your body decides it is rejuvenated.
  • Kathy   May 1, 2015 2:00 PM
    I do get tired often, but I feel like fatigue is a different feeling. When I'm fatigued, I feel as if I'm slogging through wet cement to complete any task. It's just debilitating, and as you pointed out, can come on at any moment with no warning. I no longer schedule myself for action-packed days (like travel that requires the ability to dash through airports) but I am still managing to teach. If you look at the condition of my house, you'll know where I've sacrificed to get the energy required for 26 small children five days a week.. :)
  • Diane hardy   May 1, 2015 2:07 PM
    had a day just like that.was doin well this morning then after lunch it hit me.started with headache.needed to sleep.thats how it starts.had two hours rest.felt a lot better later.day out with husband tomorrow.hope won't be too tired later.got the numbness down one leg and part of my fingers but hasn't stopped me from working...can't get disability Money as not classed as disabled enough...it realy pisses me of with that answer.will have to try again.ive got relapsing MS.x
  • shieter  May 1, 2015 2:52 PM
    ... and whilst holding a wine glass when 'checking out,' the crash awakes me! Nice border collie you've got there!
  • Mona   May 1, 2015 3:09 PM
    i totally understand. I'm still trying to work a full time job. I get absolutely nothing accomplished when I'm working, it takes too much out of me. This week I took 4 days vacation just to work on my house and yard. The entire week work was calling me, emailing me and even facebooking questions to me. I'm so frustrated. I need the job desperately, but I need away from it sometimes too!
  • terri   May 1, 2015 3:12 PM
    I can relate!! I take Modinifil when I need it. I call it my PAC MAN pill. It's non-habit forming and has saved my life.
  • Jeannie Estevez   May 1, 2015 3:26 PM
    H I am 37 years old and I was diagnosed 5 years ago I get fatigue all the time its the worst feeling you can have.
  • ladymrsb  May 1, 2015 3:42 PM
    You nailed it, my friend. The pain, you deal with. The numbness, you get over it, the hearing, vision loss, going to the bathroom a million times, but nobody understands the fatigue and it may just be the one thing that drives you up the wall some days. Thank you for putting that into words. We aren't crazy or alone.
  • Jamie   May 1, 2015 4:04 PM
    I'm recently diagnoses, but it's far advanced. 26 inactive lesions already. Many other illnesses masked it a long while. I really really relate to this.
  • Deborah   May 1, 2015 4:10 PM
    Very nicely put into words. I bet that tired
    you out. I hate taking a shower even
    a cold one only helps for minutes.
    it's getting out and dying your self. the
    humidity in the bathroom. Some I would
    rather be dirty and have the energy to
    clean up around the house. You have
    to make trade off's. Yes We are alive
    but we don't have a very good quality of
    life. I'm not lazy, 20 years ago I could
    fit my whole days worth into a half hour
    of my energy today. Takes a lot of planning
    but when your brain is not firing properly
    you have trouble even doing that. If you
    do have MS and don't suffer from fatigue
    you are very lucky not to have that symtom
  • Cheryl   May 1, 2015 4:23 PM
    I've had chronic fatigue all my life. Some people agree with me & some don't on what I'm about to say. I believe I was born with MS. I had mono twice & bedridden both times. I was always catching something. Looking back on my life I had the symptoms of MS when I was a child. I was never able to do the things other children could do. It was soooo frustrating. But the hardest was the chronic fatigue. I was diagnosed with MS 40 plus years ago. I was only 24 newly married. I am now 64. I still have the fatigue & am no longer able to take any of the medication for fatigue. So I just deal with it. Sometimes it's hard on my family because I never know how I'm going to feel. One day I can be fine & not tired at all & the next day the fatigue is so bad that getting out of bed is so hard. Right now I am walking a very fine line as my MS specialist calls it. I had major back surgery a year ago March. 2-15" steel rods with 15 screws & discs fused with a sling. I was on the table 8 hr. so my recovery is at least 2 yrs. So I have two fold fatigue the recovery & the MS. I am now looking at the other back surgery on 2 discs I chose not to have operated on because that was a 11 hr surgery. But nerves are being pinched now so I have no choice. So I'm looking at another 2 yrs of recovery. Having chronic fatigue is probably the hardest because a lot of people just don't get it. Stress makes it worse as stress it the worse for anyone with MS. Life is stressful we just have to learn how to live with it. But as long as I have had MS I try to manage my MS with rest. If I want to do something important I rest so I'm able to do them. I've leaned that my family is important to me & controlling my chronic fatigue is important. Unfortunatly we do have to chose. But I have MS, MS does not have me. I try & stay positive & strong. I am truly blessed.
  • Angi Gordon   May 1, 2015 4:51 PM
    Kellen, you are not alone, my friend. Fatigue like that has been a symptom of my MS for many years. One time while I was still working, I even nodded off while I had a client at my desk! Talk about embarrassing! And yes, it is the only positive aspect of disability. When I can't keep those eyelids open, I take a nap. When driving, as soon as I feel it starting, I find a place to pull over and sleep. Stay strong and know that you are not alone!
  • Rachel   May 1, 2015 4:54 PM
    Dear Kellen,
    I have MS too. I have found the following meditation good for clearing mental clutter and helping to restore energy. It is only 15 minutes long but seems enough to recharge the batteries. Good luck,
    Rachel
    http://www.overcomingmultiplesclerosis.org/Recovery-Program/Meditation/
  • Katzuya   May 1, 2015 4:58 PM
    Agree wholeheartedly and couldn't have explained it better. It's too exhausting. :) It never ceases to amaze me at quickly MS wipes me out. Thanks for sharing.
  • sandra   May 1, 2015 5:20 PM
    i can so relate too this i can wake up and be up for couple hours and i need bed again
  • Robin   May 1, 2015 5:47 PM
    i have had fibromyalgia and chronic Epstein Barr Virus for 17 yrs. I started having severe fatigue in 2010 and was diagnosed with CHronic Fatigue Syndrome. Later in 20111 was diagnosed with MS. Before I knew I had MS, I was trying everything for fatigue and one thing that has helped me tremendously and I swear by it is Ribose. It is a supplement that I put in my water bottles. Many times when I'm crashing it has helped bring me out of it.
  • nodramamama  May 1, 2015 6:05 PM
    Nuvigil is the ONLY thing that gets me out of bed and able to function, i.e., get dressed, put make-up on, actually answer the phone & maybe return phone calls, get out of the house, etc... I take the upper end of dosage, 250mg 2 times per day, 1 a.m., 2nd mid-afternoon. Also helps tremendously w/concentration & motivation. Relate SO WELL to the "Do something one day" and then "down for the count" the next day...or two! It makes me feel so much better to read other's same experiences! God bless you all!
  • lisa   May 1, 2015 6:13 PM
    thanks for sharing & oh lord I can so agree and have chronic fatigue as well bobble heading trying to stay awake while some one is talking etc etc on 4th fatuge medication now and thought wasn't going to work but today day 6 didn't have my noon ish crash as I call it where I have to rest no matter what!! and still then even later and im sure due to almost 2 years only getting 2-3-4 hours sleep nightly but better then when this monster 1st got me bad I wasn't sleeping at all for days!!!!!! but as I said today day 6 ok and finally had a good day in what 2 1/2 years I think I did to much cuz now finally sitting body and mind shutting down like used to but at least later in day then normally 11 am -noonish times its 7 pm here and I hope the medication will continue to work this good for me or is it a once awhile thing??? who knows with this MS its a goofy hard to understand disease at times!!! best of luck to all stay strong and keep fighting !!!!
  • Melisa   May 1, 2015 6:22 PM
    Totally get it! Mine is almost the same way but I still work.
  • Melisa   May 1, 2015 6:22 PM
    Totally get it! Mine is almost the same way but I still work.
  • Melisa   May 1, 2015 6:22 PM
    Totally get it! Mine is almost the same way but I still work.
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    maria1  May 1, 2015 7:01 PM
    Fatigue, difficulty concentrating, foggy thinking, frequent constipation, muscle aches & stiffness, as well as carpal tunnel syndrome are symptoms of hypothyroidism, so says an article in Good Health Styles a magazine I got from the local Health foods shop. It says L-tyrosine an amino acid found in eggs, nuts, meats, et al protein rich foods, Vit C, Selenium, Thiamine (B1) Riboflavin (B2) ALONG with iodine are treatments recommended .
  • cboyson  May 1, 2015 7:15 PM
    This is SO the way it is! If only others would understand...
  • Cathy Hattery   May 1, 2015 7:20 PM
    I agree fatigue is rough although after reading this, I think you must have it worse than me. MS is a terrible disease, and I pray for a cure in my lifetime. I have three daughters, and I believe it is heredatary. My mom had it. My brother and cousin on my mom's side have it. I also think where you live has a lot to do with it. I grew up in Ohio and my two sisters moved to California and they don't have it. It's mysterious, and complicated.
  • evestarr1   May 1, 2015 7:40 PM
    Fatigue is to tiredness what lightning is to a match.
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    evestarr1  May 1, 2015 7:42 PM
    Fatigue is to tiredness what lightning is to a match! I read that once in another article trying to convey severe fatigue to a healthy person. I've appreciated the simplicity of this analogy ever since.
  • terri waltz   May 1, 2015 7:46 PM
    This is spot on...thank you so much. I am on modifinil...however it does not help at all now....
  • Sara   May 1, 2015 8:34 PM
    I have such a hard time making anyone understand how debilitating MS fatigue can be. Mine usually hits me in the early afternoon. I really have to choice but TO lay down. And it is NEVER a quick nap. I usually sleep for a good 4 hours. So I missed a decent portion of my day. It's pretty frustrating. Meds have never helped. It's the reason I ended up on disability.
  • Esther   May 1, 2015 8:48 PM
    thank you ! I have been struggling so & no one gets it. you nailed it.
  • Irma   May 1, 2015 9:10 PM
    Thank you for the post. The descriptions are very accurate. I have one to add, sometimes it feels like someone has pulled a plug and drained everything out of me. then it's time to collapse.
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    alicia-foote  May 1, 2015 9:19 PM
    Fatigue is also my number 1 symptom. It is so difficult to explain although you pretty much nailed it. Out of all the symptoms i personally deal with including pain memory loss numbness etc, the fatigue is by far the most difficult to handle and seems impossible to ttreat:-(
  • Angel   May 1, 2015 9:30 PM
    I push through it, I refuse to allow the disease to win. I agree there are times I feel like I got hit by a train and just want to sleep. When I feel like I am going to crash I exercise most times it works don't ask me why. Peace
  • Shelley   May 1, 2015 11:51 PM
    This describes me to a T. The fatigue has finally become a part of my life. I hate it, especially for 14 year old who it affects most. I embarrassed myself once at a dinner for my daughter's bday with my family. They took pictures and laughed at me. I was humiliated,, embarrassed and cried. I would give anything if my family and extended family stood by me and with me like so many stories I read about.
  • James   May 2, 2015 12:17 AM
    Thankyou so much! You have articulated possibly the most frustrating and debilitating aspect of this disease. People can understand when you can't stand because of balance issues say, but just assume laziness or worse when "fatigue" has knocked you for 6. Thankyou
  • MaryAnn   May 2, 2015 1:32 AM
    When I read this I could have cried because it describes what I go through pretty regularly. My husband works 12 hour nightshift and was upset last evening before he left for work because we only get maybe an hour together and I kept falling asleep mid conversation. I was out cold. I slept most of yesterday and it just didn't seem like enough. Thank you for sharing this...It makes me feel not so alone to know that I'm not the only one experiencing this level of fatigue with MS
  • carmelita   May 2, 2015 1:45 AM
    And everyone thinks your lazy or a messy person .....smh sometimes I have to budget out my time because I know I can only do so much ....so its either laundry or grocery shop..... it takes so much energy just to do simple things that should be fun like a shopping trip or getting my nails done....I can basically do one outing a day d onetime none at all I feel like a hibernating bear :-(
  • Jim   May 2, 2015 3:23 AM
    I wonder if I am headed towards the type of fatigue you're talking about. By the end of the work day I find my hands are so tired that I start making right pinky click errors and typos. If I over exert myself my legs start vibrating / twitching.

    Are you following the Med-day Biotin trials for progressive MS? Very exciting stuff. I think fatigue may be and indication that the myelin is damaged but the nerves are still functional. Seems hopeful that re growing myelin may partially reverse disability and reduce fatigue.
  • christine Evans   May 2, 2015 3:36 AM
    I was at my counselling session when we worked out what i was experiencing. I said 'Im finding it hard to speak, i don't feel sad or do i feel happy? This feeling is familiar, my friend Tim and i fall out when i feel like this because he thinks i'm moody. Then once i had opened the feelings up the penny dropped, i realised that this is the chronic fatigue i have read about. That was twenty years ago.
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    FWilson  May 2, 2015 6:57 AM
    I totally understand and agree with your post. So there is a real name for the feeling like crap every afternoon when you haven't really done anything to warrant feeling so tired every afternoon even when I haven't done anything to make me feel this way. When right about 1:00 pm all I what is sleep but I can't I have things that I must do like pick up my kid from school at 2:30pm or maybe take my dog out for a short walk. By this time everyday I start to lose my eye sight, both of legs start to hurt my hands and arms give up, and the often talked about MS hug kicks in.
    Oh I long for those days when getting out of bed at 5:30am going for a 20 mile bike ride or early morning hike in the mountains was my everyday!
  • Kelly   May 2, 2015 7:06 AM
    This is such a true statement for my symptoms. Recently my mom passed away, and I can't seem to collect enough energy to get out of my own way. The emotional fatigue that you speak of is right on target. I spent days at the hospital with her and as long as I kept going, and took my alertec, I seemed to be ok, not good but ok. But now that its all over I'm exhausted. I can't even muster a small drive, or housework. I noticed your dogs, my dog lies down with me almost as if he knows when I'm not feeling well. He won't move until I do.
  • Leah   May 2, 2015 7:40 AM
    I am so glad to hear that there are others like me. It doesn't matter what kind of activity I do, it wipes me out. Even just going out to feed the dog, taking out the garbageout, and God help when I try to do any yard work at all. Thank goodness for my daughter's boyfriend.
  • John kudrick   May 2, 2015 7:59 AM
    Hi Shannon ,boy can I relate to you ,I have primary progressive and my fatigue can be very real,the problem is most people can realize the extent of the fatigue ,oh ,so you feel tired ,go lay down ,ha i say ,if they only new , The major question i have is why every piece of infomation I receive about M/S never discusses pri. progressive ,only people with relapsing M/S .Since it is my understanding that we < people with Pri Progresive make up only 5% of the M/S population ,there fore it might not be profitable for drug companys to devote much time on a drug for us ,no money in it ,not enought customers > It took 5 years for doctors to come to a conclusive reason for all my problems I just received a e-mail from AAN and have come close with a oral medication but has not been approved ,oh well ,may be some day Bye John PS ,that email just confirmed that every thing in this world ,and i mean every thing is controlled by money ''''''
  • loey nass   May 2, 2015 8:04 AM
    i have had M.S. for 20 years and one of my biggest problems is fatigue. i would say it is like someone zapped you. i am so weak i feel like a head laying on a pillow disconnected from my body. i have no answers after all these years. rest, you have no choice.
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    Jaimi  May 2, 2015 10:45 AM
    Yessss! The word 'fatigue' seems extremely inadequate! When you need a breather between sock 1 and sock 2, it goes far beyond being tired.
  • Shanna Kinser   May 2, 2015 10:52 AM
    Last week, I was nodding off in the exam room with my MS specialist! I had no more than asked about an electric scooter to compensate than she wrote the prescription. I like the medical term lassitude to describe the exhaustion. It's just that most people don't know the word and I get too tired explaining over and over. Lol
  • Sharon Shorrock   May 2, 2015 12:11 PM
    Yeah the chronic fatigue just totally wipes you out! Very hard with a family but when you need to rest you need to rest. Its so hard when you've got plans and then I'm always cancelling but luckily I have family and friends who understand. Even my 10yr old son! And yes the over thinking and doubting can be hard but clearing the mind does help!
  • Kija   May 2, 2015 12:52 PM
    Hi friend. I can relate.. I don't have MS, I have RA. I was just feeling the strain this morning... Thinking of all the things I want to do... But even just thinking about the things is exhausting... I still have lucid dreams where I can do everything ...:-) sometiMes I wonder if my subconscious just makes me sleepy so I can be physically active in my dreams... Stupid auto immune disease
  • godsjul  May 2, 2015 1:41 PM
    T
  • godsjul  May 2, 2015 1:49 PM
    Thank you so much for this writing. I have MS fatigue as well, but at work yesterday I think it went to a new level. I could hardly keep my eyes open. It felt like someone had just sprinkled me with sleep dust. My balance and visual focus went bonkers too. I've never had that experience and it was scary. This article was very helpful. I knew it was a "normal" MS symptom and have had the MS fatigue for quite some time, but after yesterday at work and reading this article, I know I'm not alone.
  • Anybeth   May 2, 2015 6:09 PM
    For me, too, fatigue is different than sleepiness. With fatigue, I might not be sleepy but instead too exhausted to move. I can have plenty of both, but I can recognize them as different.
    Of the sleepiness, I wonder if many who fall asleep during the middle of things have lesions in the hypothalamus like I do. Among other things, it regulates sleep. Sometimes it's like I have a switch for wakefulness/consciousness that I can't control and that all the medicine in the world can barely touch. That can make me fall asleep during the middle of things. Fatigue doesn't.
    I always have some level of fatigue no matter what. I live alone, so I keep some food and water by my bed for the rare-ish days that I can't make it to the kitchen. Meds make it such that I almost always can do the things required for daily living and the varying nature of my MS means I can generally take care of the basic weekly/monthly chores. And I really milk those occasional very good days. :-)
    Oh, for those who use computers, a tip about a kind of device I found that's helped me with fatigue: a trackball "mouse" (pointing device). I originally got one so I could use my laptop more easily while I was getting an IV, but I've since noticed it really helps with fatigue. It takes getting used to, but with a trackball, you only move your fingers and not your arm. Till I had one, I never realized just how tiring using a mouse or trackpad was. I just love it.
  • Heather   May 2, 2015 8:03 PM
    Hello. Yes. Fatigue is like having a can of petrol for your lawns, however you have no idea how much, and whether you will get all the lawns mowed and have some left over, or run out half way through, and there's no more available right now, and no definite eta of when it will be available!
    I do have a way I have found does help a little, maybe it will assist you, I know its different for everyone. I do Transcendental Meditation twice a day. Its like tuning out the body from the world, while the mind still hears, acknowledges all the things happening around you, however it takes no active part, just feels the world go by. The body from the neck down does a complete relaxation for about 15-20 minutes, and then, quite often, I do find I have a little petrol left, enough to put whatever I was doing away for another time.
    Good luck sweetie,
  • Charlotte Lamm   May 2, 2015 9:16 PM
    i enjoyed reading your story and have the fatigue problem. It takes me so long to get ready to go somewhere, and I do space my tasks out. By the time I have done everything, I don't have the energy to go. I am out of spoons! When I push through, my mood may not be my normal caring self, and I offend my family members who in turn argue with me which totally stresses me and MonSter rears it's UGLY head with added symptoms. I just want to give up when even my adult children and a sister can't understand. That hurts me deeply. My husband, friends and one sister get it. I am grateful for them. I don't want pity or sympathy at all. I want family to understand and still SHOW their love for me. LOVE HEALS I know. Telephone calls, interested conversation, and LOVE reciprocated, NOT boundaries, hateful declarations or ignoring are what we need. Please read this information and seriously contemplate what you are doing to someone who is totally exhausted and can not handle your selfish expectations or boundaries. I'm about ready to write a book for adult children and siblings of one with MS.
  • Denise Johnson   May 2, 2015 9:25 PM
    I have Ms now for 25 years.I take Modafinil 400 mg a day.If I miss a dose all I do is sleep and its very hard to stay awake.Since I have been taking the high dose its been allot better. My cousin she is on only 25 mg a day.We were diagnose the same year but she 10 years older than me.It really stinks when you cant stay awake.
  • Coco   May 2, 2015 9:47 PM
    I can totally relate. I am on a quest to recover and recently had the 23andMe website. I found out that I have a genetic mutation called MTHFR which causes all kinds of problems. Many resemble MS. It can cause the body to have trouble with methylation, specifically Methylfolate or B12, which can cause a host of neurological disorders. I am in the process of correcting my chemistry through diet and supplements. It's worth exploring. There is a ton on info about MTHFR. One in three people have this mutation. I am determined to make a full recovery. Good luck to you. I can definitely feel your pain.
  • Kelly   May 3, 2015 2:22 PM
    This is true but the fatigue hits me a lot different if I over do it like this weekend I helped my husband put our yard in I mean shoveling dirt he was right there working today we put down six yards of gravel that doesn't tire me out now what does is doing six loads of laundry in one day I hate seeing dirty clothes in basket (my ocd) and at bed time nope have to get up till 1or2 then it's bed time.
  • Karen   May 3, 2015 8:01 PM
    I was diagnosed with MS in the Fall of 1999, but I believe I've had since college (some 12 years earlier in the Tacoma area). I think that I am in secondary progression. Fatigue is definitely an issue for me. But I don't think people really get it...You have to have MS to truly understand what we go thru. Thank you for writing this account perhaps it will help others see what we go through day to day. Bless you and your family.
  • marta morales   May 5, 2015 5:24 PM
    I know is horrible,like yesterday I said,ok tomorrow I'm going to do laundry, and today I'm so tired and painful, I still working because I want to do something, and to help my husband, but at the same time I'm so tired
  • laura   May 9, 2015 8:45 AM
    Finally someone who has described the exact thing I go through, I used to be able to clean my house and bee bop around for the rest of the day, now I have to take a rest for hours just after doing 1 room, I feel like I've run a marathon when I haven't even gotten off the couch yet. I went from walking 6 days a week for an hour to barely being able to walk 20 minutes without being wiped out ..Thank you for sharing
  • Tammy   May 11, 2015 10:22 AM
    Oh my, I go threw this all the time, I feel like I could sleep all the time.. My Family has a hard time with this sometimes!
  • Woodirae Forrester   May 12, 2015 5:19 PM
    This is exactly what my fatigue is like, I thought I was alone in what my fatigue was like, the therapists all give you ways to do things easier, but when we wake up with this tiredness we are beat before the day begins. Thank you for this post
  • Tom B.   May 17, 2015 4:22 AM
    Quicksand. Just try to float.
    Tom
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    ruby_ellen  May 19, 2015 4:16 AM
    I refer to my bouts with fatigue as debilitating fatigue because it's so strong that it controls me! I to wonder if perhaps I have narcolepsy! But a sleep study claims I have severe apnea. CPap helps some but not enough.
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    carrie-peer  May 19, 2015 5:53 PM
    I've had PPMS for 21 years. For several of those years I needed 2 to 3 hr. naps in bed every afternoon to get through the day. Then a doctor tested me for Epstein-Barr virus, which showed my viral loads to be 10,000 X that of 'normal' people--meaning I had Chronic Fatigue Syndrome as well as MS. After 6 mo. treatment with Valcyte--a potent anti-viral--my viral load was down 75% and I no longer needed daily naps!! That was 9 yrs ago, and fatigue is still no longer an issue for me. This experience makes me wonder how much of 'normal MS fatigue' is actually a separate, treatable condition? .
  • tusagni  May 29, 2015 11:06 AM
    I work an erratic schedule, 40 hours a week, some days I have to be to work by 8am some days I'm there til 10pm. Sleep is irregular. Hubby just blames bad sleep. But no matter how much I sleep I never feel rested. Ever. Nobody understands that I only have enough energy to work and sleep. It's making my life miserable. Nothing extra for fun or even chores. So frustrating and nobody I know gets it!
  • t-rent  May 30, 2015 9:15 PM
    I feel very similar when fatigued. I work full time as a CNC Operator, involves lots of math. When my brain is slow and fuzzy, I leave or call in. My work has been great so far. I am learning my limitations. I pray I can keep working a while longer. 1 day at a time.
  • gail59  Jun 3, 2015 9:16 AM
    Fatigue is the biggest part of this nasty monster. I had been on a combination of Modinifil and a low dose of Adderall. Believe it or not that was getting me through my work days and also giving me some quality time with friends, grandkids and so on. After 6 or 7 yrs my wonderful insurance company decided THEY are no longer going to allow me to take the adderall, since that is not an MS specific use drug? Yes, we've done the appeals, to no avail. How is it the guys behind the desks know so much more then patients or their neurologists? Fatigue! Phooey!
  • Jim   Jun 15, 2015 5:00 PM
    Fratigue is by far the most difficult part for myself. Well, that and the heat! My doctor prescribed modafinil also. Like many others the insurance company refused. Due to the fact that it's not tested or proven for ms. I wrote an objection letter and they allowed it to go through. It does work!!!! Don't get me wrong, it's not 100% cure all, but I'm not falling asleep behind the wheel
    I'm still tired but no where as bad!
    Good luck to all,
    Jim
  • Dawn   Aug 1, 2015 9:29 AM
    Hi all. Im dawn 46 years old. Diagnosed in 2008. I'm going through a major flare right now. Almost 2 months. The fatigue has a hold on me that I can't shake. I celebrate and brag if I managed to shower and make dinner in a 24 hour period. Sad! I was on rebif years ago,and had a rare side effect. Dilated Cardiomyopathy (chf) . my heart function was below 15%. Thank god for a cardiologist that figured it out, called me and said stop the med, put me on heart meds and 4 years later, my heart function is almost to normal, but heart still damaged. Neurologist has me on predniaone. As I'm tapering, the fatigue worse. Prescribed nuvigil. It was working. Insurance, united health won't pay for it. 1100.00 a month. I'm on disability. That's almost my check. Doc changed to adderal.. I slept. Now gave me Dexedrine. Haven't tried. Afraid it will affect my heart and can't get a hold of cardiologist. I feel so useless and such a burden. Anyone know which of these meds would help the fatigue and not do damage to my heart. I can't keep this up.
  • samanthaf2078  Aug 9, 2015 12:13 AM
    If I could sleep all day everyday I would! I hate the feeling of not being productive or wasting my day. And All the coffee in the world doesn't help.
  • janiceduffy  Aug 15, 2015 2:45 PM
    With my fatigue my family cannot understand why I am so tired doing nothing as they say, I used to be so active worked 6 days a week and loved it now I can hardly make the bed before I am exhausted but bedtime and I am wide awake. I get so mixed up when fatigue hits and this annoys my hubby he just cannot understand this is Ms and I am not making it up, my sister no longer speaks to me as she says I am acting up so I do not need to work or help look after my mum who had a stroke, I am really upset she thinks I am making my illness up, especially as my brother has it too he was dz after me but my sister does not say the things to my brother she does to me.......
  • Larry Foley   Sep 12, 2015 8:39 AM
    Hi Keller.
    Thanks for the share on the fatigue.
    Ya I go somewhere and 30 minutes later
    I want to get back and rest.
    Have a sleep
    My hip is needing work.my knees.
    All other symptoms too.
    The miracle is I'm in as .And next year
    I'll be 25yrs sober on May 17th
    I'm off cigarettes too .24 years
    I used to go hiking.
    That's all done with now.
    God bless ya kellen.
    And family always .
    .
  • Larry Foley   Sep 12, 2015 8:39 AM
    Hi Keller.
    Thanks for the share on the fatigue.
    Ya I go somewhere and 30 minutes later
    I want to get back and rest.
    Have a sleep
    My hip is needing work.my knees.
    All other symptoms too.
    The miracle is I'm in as .And next year
    I'll be 25yrs sober on May 17th
    I'm off cigarettes too .24 years
    I used to go hiking.
    That's all done with now.
    God bless ya kellen.
    And family always .
    .
  • ShellBeachLani  Sep 29, 2015 2:02 AM
    I was just diagnosed this year, but fatigue is by far the symptom that has had the most impact on my life so far. I have always had energy and motivation. Now I rarely can sit anywhere including the toilet for more than a few minutes without nodding off. I have even fallen asleep standing at the kitchen sink. Just recently I started on Wellbutrin and find I am more alert. I still am weary and run out of steam, but I seem to be able to keep my eyes open. I haven't had any of those days where I thought I might never get up again. I'm hoping that this will last and is not just a temporary break in the cycle
  • RDanielle  Dec 8, 2015 5:30 AM
    I would like to know more about wheels of red please
  • Carole Lesly   Jan 5, 2016 9:20 AM
    Thank you for sharing this! Fatigue is probably my number one issue with having MS! And the fact that friends and family don't understand about this type of fatigue (which I think the word itself doesn't describe the feeling...AT ALL!), is so frustrating!
    I take 20mg of generic Adderall when I get up in the morning & another 20mg in early afternoon if needed. Most of the time it helps. But there are many times I can sleep right through the day!
    Thanks again for sharing! It's good to know that we don't suffer alone!😃
  • Marcia   Mar 24, 2016 4:04 AM
    that you for expressing so well the fatigueyou. do better thani could but it seems you got in my brain and said how i feel one day at the dr next 20 so hrsim out and yes adY with the Grandkids,even though im not havingtocare for them it takes at least 2 day sometimeseven wakingg eat .so many thing im just beinb lazy km not this helps meto knowits nnot just me thank you
  • lauree   Apr 5, 2016 7:01 PM
    Thank you Kellen! your article was in the ms newsletter, I had to look you up. You perfectly described my fatigue, too. I ve never heard that others have it this bad until you. So sorry you experience it, but grateful to hear it. My ms fatigue went to this extreme literally overnight. woke up one day, did daily run, but fell asleep while running! Hit a tree. Since then, I cannot keep any schedule, cannot be wakened by alarms, people, noise, once asleep, and after 12-16 hours i ll wake for awhile, but doze off repeatedly, as you describe, during events, conversations, and in parking lots. Had to stop working, as could not keep schedule. Was falling, literally, asleep, smashing my head on counters, floor. It s dangerous! Because I live alone with all this, in 2008 I got a service dog. Best thing I could do! Found special training place willing to try training a dog to help alert me sleep is coming, try to keep me awake until I am safely down, try to waken me when the alarm goes off, as I dont hear it, but he does. It was different type of training, as my dog acts on his own, without command, in response to my varying degree of tiredness. Amazingly, he s always right. He knows i ll fall asleep way before I do, so I finally learned to trust this,and dont leave home when he s warning me that it s going to be a bad day, and I rarely fall anymore because he waken me right before it happens. He s an amazing dog! Got him at ECAD, East coast assistance dogs, I highly recommend them, as they re great with finding solutions for each individuals specific problems, and he also taught himself what to do just by watching me over and over, and then altering what they taught him.if necessary. All this while i m sleeping, but I ve found that SO much goes on while i m sleeping. There s nothing else i ve found that helps, so eventually learned to stop fighting it, sleep when it comes, wake when ready, never know how long awake or asleep. It is "narcolepsy like" indeed,my MD says only real difference is narcolepsy starts in childhood and this when I was 52! So, again my thanks to you. I dont feel quite so crazy, or alone. Lauree A.
  • annette   May 1, 2016 9:47 PM
    Thank you my kids don't understand spacing my time they don't see I don't sleep at night because of bladder problems so I end up 2_3times napping they keep telling me you need to get up move exercise .then I'm down the next day sleeping the whole day.
  • Vince   May 14, 2016 5:23 PM
    I am constantly tired from mid afternoon until bedtime. I take alot of meds that make me tired but yet my head and eyes get so tired. I have MS since 1989, and i,m a country singer. Sometimes i can't go to a recording session or concert i'm that tired. I take B12 and it still doesn't do any good.
  • SUSAN   May 19, 2016 10:50 AM
    EVERY SINGLE ONE OF US HAS,IN OUR BLOOD, THE REMNENTS OF MONO. ASK YOUR NEURO NEXT TIME.

    I HAVE GOTTEN A 10,000 LUX LIGHT. I USE IT FOR 20 TO 30 MINUTES IN THE AM WHEN I GET UP. WHEN I FIRST GOT IT I DID IT RIGHT AWAY, AND I WAS AWAKE UNTIL 2 AM. NOW IT IS FIRST THING IN THE AM. PLEASE READ UP ON IT. CANCER PATIENTS HAVE BEEN USING IT FOR SOME TIME. IT IS SAID TO HELP WITH DEPRESSION SUCH AS SEASONAL AFFECTIVE DISORDER, IE; LACK OF SUN AND ALSO LACK OF VITAMIN D
  • PopoeyeBluto   Aug 26, 2016 7:20 PM
    It might be a mild case of Narcolepsy. I don't think it's serious, some people have had it for years. But you might want to give up driving for everyone's good.
  • Samantha S.   Oct 10, 2016 8:20 PM
    Fatigue was my first symptom and still to this day remains my worst. It was the strongest issue that took me away from my work of 15 yrs and robs me still of normal life. Sleep studies show normal activity, no apnea. So what's a MSer to do? I try to eat right, I try to excercise moderately.......I try and try and try, but still can't wake up to any alarm. I have been dubbed as 'unreliable' by the family, not because I'm unwilling to help, but because I'm disabled with fatigue. I've grown fat, I've grown depressed, I've grown tied 😊 of this bull ***** way of life and the way my family preserves me to be. I'll just take a nap and hopefully feel better when I awake in order to start this same ordeal again tomorrow.
  • Susan   Oct 17, 2016 2:15 AM
    I day on and 6 days off. I'm lucky with an understanding husband. Being in public is the hardest. Being exhausted is a daily battle. My life has completely changed. I am more introverted to save energy. I heard stem cell, in Canada, treatments sre working.
  • Ashley Yauger   Oct 19, 2016 1:58 PM
    I have had me since 2006 I know exactly wat u mean wen u say u stay tired all the time. just seems not many ppl can relate to feeling this why unless u have me. most don't understand how wore out my body gets. I can tell someone I'm so exhausted I am in there like me too, but really the just don't get it. seems like that's all I do is sleep but it still isn't enough. I always falling asleep no matter were I am at.
  • Kat   Nov 22, 2016 7:05 AM
    i totally get you, i can fall asleep just going to the bathroom and tired of taking meds that don't really help for more then 2 hours, I'm now in a wheel chair and can still fall asleep, everything you said is so true, i pray some one finds the answer soon, I want to live my life, not sleep what's left away.
  • leeza  Mar 6, 2017 2:15 PM
    I have so much fatigue as well. Prayerfully awaiting disability. I had to income qualify it has been over two years. God is sustaining as well as my young son.
  • Benoist   Apr 10, 2017 12:11 AM
    Kellen, sincere thanks for your wonderful article. I have been trying to figure out if I am severely depressed or what is causing this terrible fatigue. It is ruining my life. I had no idea this could be related to MS, so now I at least have a place to start. Even my wonderful doctors scratch their heads, almost as if I were making up the fatigue. I will let you know what I find out, good man.
  • Eleanor burgess   May 13, 2017 1:05 PM
    Just getting tired doing nothing even if I stand too long I am finished, I am retired but due to Ms cannot walk far do what can I do
  • Margaret Siber   Jun 25, 2017 7:44 AM
    I so relate to Kellen Prouse's description of his fatigue. Fatigue is my most disabling symptom of MS. I found this blog by searching for "MS and having showers", since
    I can't even get myself up to have a shower this morning! I live in a senior retirement building where I can get help having a shower on those few occasions when it is necessary.
  • Jere   Aug 30, 2017 3:03 PM
    Wow, I was diagnosed with MS a couple years ago. I work for the school system and just started back to school this year. I have been so tired, and I have been getting enough sleep with help from alprazolam to shut my brain off enough to fall asleep, but I have started nodding off during the day. This is new in the last few months. Does it come and go like other things? I have Relapsing-remitting MS. I have been struggling so hard this year to do my daily work and I am failing horribly. I never put the tiredness down to MS I was googling what could cause it and this pops up. With so many of you having the same issue. I guess mine propbably is also. I know the heat will drain me in a heart beat. But now it is concentrating and focusing that is doing it. I already have issues in the congnative area and walking. I just seen my doctor yesterday I wish I had read this first. I will have to schedule another appointment to see what he can do to help me make it through the day ... Thanks, I don't know anyone to share things with about MS. I like the idea of their being others that can talk you through things.
  • Cindy   Sep 27, 2017 4:20 AM
    I have ppms and I suffer from bad fatigue. I am unable to walk unaided and use a rollater around the house. Just going to the loo and I'm zonked out for an hour. Any suggestions to help relieve this fatigue a bit?