I’m so tired…

I'm so tired, I haven't slept a wink
I'm so tired, my mind is on the blink….

The Beatles song “I’m So Tired” isn’t about multiple sclerosis. But its lyrics have come to my mind pretty often since I was diagnosed with MS. Outside of an occasional numbness on the right side of my face, fatigue has always been my main MS symptom. And, as anyone who experiences MS-related fatigue knows, it’s not just about feeling tired. It’s about feeling exhausted, beat, and too tired to know what to do next. It’s a defeating and humbling experience.

Outside of lying down and letting it run its course, I haven’t found too many useful ways to deal with that fatigue. I’m typically one to push through illness; I try to work out almost every day, even when I have a cold or a mild digestive problem. And to be sure, sometimes getting out and getting moving combats my MS fatigue. But not always.

I’m lucky that my fatigue occurs only occasionally. People for whom MS-related fatigue is a regular or even a constant presence should consult with a physician to seek ways to mitigate the problem. Sometimes modifying your sleep schedule, managing your exposure to heat, or even minimizing the amount of wearying walking you do can help. A couple of medications are used to manage MS fatigue, too.

But the real reason I’m writing about fatigue today is to remind people what a common and sometimes telltale symptom of MS it is – one that is often overlooked because tiredness is so common. If you think you feel way more tired than you should, talk to your doctor and insist on exploring the topic together. I will never forget the routine checkup in late 2000 during which I reported feeling ultra tired. When the young physician I was seeing asked me how severe my fatigue was, I felt a little embarrassed and downplayed the situation. “Oh,” I told her, “I’m probably no more tired than any other mom with two little kids.”

My two little kids certainly contributed to my being tired. But they weren’t to blame for the depleting fatigue that settled in my bones and made it hard for me to get up off the couch. Nope: that was MS. I just didn’t know it yet.
 

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Jennifer

Jennifer LaRue Huget, Blogger

Jennifer LaRue Huget was diagnosed with MS in 2001. A freelance writer and children's book author, she lives in Connecticut with her husband, two teenage kids, and two brown dogs. Her website is www.jenniferlaruehuget.com.

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    40 Comments

  • Avatar
    refusetoquit  Jun 13, 2014 10:47 AM
    It IS hard to decifer what 'normal' fatigue is...............as a healthy, sports playing, type A personality, I FINALLY started a stimulant to help focus and energy at work. Now that I'm not working, I worked my dosage down to 5 mlg and tried twice to eliminate it being that I altered diet and lifestyle. NOPE, there's deffinately a differance in my attitude........MS changes your mind on 'how' you manage daily............some meds give a helpful boost.......as time goes, I'm sure I'll try eliminating it again to see if it's necessary but until then, swallowing my pride on 'how I don't NEED help', will do.
  • stuartandbrenda  Jun 13, 2014 2:33 PM
    Tried nuvigil but kept me awake, cut dosage in half got severe stmach ache, stopped taking. Now just getting by.
  • Heather Adel   Jun 13, 2014 2:57 PM
    I will be so tired some days that I literally have to close my office door and have a nap on the floor. I find too that if I come home from work and then do some other task, no more than two hours later I am body tired, that is my body is so heavy, my head is so heavy, my eyelids are so heavy that I just need to rest. The only problem is rest doesn't usually help.
  • Joann   Jun 13, 2014 4:00 PM
    I just use stay awake that sometimes works and sometimes I'm just alert and feel like I weigh 100 pounds more :(
  • Stacy Mullan   Jun 13, 2014 4:01 PM
    Have been on Tecfidera since June of last year & an Amazing supplement since November; www.stacymullan.le-vel.com
    This supplement has changed my life most day are better than ever before when it comes to this nasty symptom of fatigue.
  • Kerri   Jun 13, 2014 5:02 PM
    Good description = "depleting fatigue that settled in my bones and made it hard for me to get up off the couch." Yes, when it hits even my bones feel tired .
  • Connie   Jun 13, 2014 5:10 PM
    Fatigue is my constant, some days worst then others. I've been on providgal 200 mg x2, I no longer bother to take the second one because it no longer combat's my afternoon fatigue.
  • Deborah   Jun 13, 2014 5:11 PM
    Just recently diagnosed with MS I absolutely can not get through this fatigue. It is awful. My whole body feels heavy almost all the time. I have spoken to my doctor nurse a few times now and she really dosent offer anything at all.what do I do I can' t be this way it's just not me.

    Just had to vent.
    Thank you
  • Deborah   Jun 13, 2014 5:12 PM
    Just recently diagnosed with MS I absolutely can not get through this fatigue. It is awful. My whole body feels heavy almost all the time. I have spoken to my doctor nurse a few times now and she really dosent offer anything at all.what do I do I can' t be this way it's just not me.

    Just had to vent.
    Thank you
  • Deborah   Jun 13, 2014 5:12 PM
    Just recently diagnosed with MS I absolutely can not get through this fatigue. It is awful. My whole body feels heavy almost all the time. I have spoken to my doctor nurse a few times now and she really dosent offer anything at all.what do I do I can' t be this way it's just not me.

    Just had to vent.
    Thank you
  • Brooke   Jun 13, 2014 6:48 PM
    Thank you for this article. I just had this discussion today with my neurologist as it has significantly started to affect my daily type A personality life. Stimulants have helped to a point but I saw little change with diet change, weight loss, vitamins. It is hard to explain (even to your doctor) and yet very few resources available. It was really quite a struggle to nail down a starting game plan. I still feel as though there is this magic formula of things I need to be doing and everything will go back to "normal"
  • Kistra   Jun 13, 2014 6:50 PM
    I often wonder how many moms hear their PCPs say, "well you have young kids and you work, of course you're tired." That is what I heard for months and months. I compared myself to other moms with similiar lives who did not need to nap every afternoon. I knew it was not just "mother fatigue." Fast forward almost 4 years later and I am still a tired mom, but finally with a better reason - MS. There are days I am so tired that it seems like too much effort to expand my chest to breath. Your phrase "too tired to know what to do next" is such a great description, Going to steal that phrase and use it at my next appt. with my neurologist when he asks me about my fatigue. Thanks, tonight I felt like someone understood what I am feeling. Good health to you.
  • cindy   Jun 13, 2014 7:04 PM
    I was dx in 2008. The first year after the dx nothing really changed. I contrived to walk for miles a day and went back to work as a school cafeteia manager. That started the changes. Getting up at five o clock and working a fat paced join all day and then stressing till four or five to finish paperwork began to take it's toll on my body. I would get to work late, leave when everyone else did and come in on the weekend to catch up. I took leave of absence and when I went back it was worse. I tried several meds to help but they altered my mood and made me anxious. I couldn't be around people. I quit just three weeks later. The fatigue has not gotten any better but I know when to stop and rest.
  • Carrie   Jun 13, 2014 8:17 PM
    I am recently diagnosed as well; it is hard to explain to people who feel tired from their regular lives and have difficulty differentiating how your fatigue may be "different" .. I am somehow p was making it through my fast paced job to come home and crash hard, just making it through my must do tasks for the most parts or napping to make it through- really living to work... It turns out I have Lymes as well so I'll get a bit of time off.

    The scary part was before my diagnosis when I didn't understand why I was getting so tired on normal driving routes and my eyes would just be closing on me; I'd have to pull over and stop.

    I don't have any supplement suggestions.. I started tecfedera and I have green juice /smoothies almost every day for lunch during work to try and keep my energy up at work.
  • Carrie   Jun 13, 2014 8:17 PM
    I am recently diagnosed as well; it is hard to explain to people who feel tired from their regular lives and have difficulty differentiating how your fatigue may be "different" .. I am somehow p was making it through my fast paced job to come home and crash hard, just making it through my must do tasks for the most parts or napping to make it through- really living to work... It turns out I have Lymes as well so I'll get a bit of time off.

    The scary part was before my diagnosis when I didn't understand why I was getting so tired on normal driving routes and my eyes would just be closing on me; I'd have to pull over and stop.

    I don't have any supplement suggestions.. I started tecfedera and I have green juice /smoothies almost every day for lunch during work to try and keep my energy up at work.
  • Deborah   Jun 13, 2014 10:17 PM
    The hardest part is my husband just doesn't understand fatigue. And he thinks I'm super Mom, because I have always been able to just do what needed to be done and I can't get thru this. He says you just have to fight this and exercise it will help you gain energy. Which I do understand is true but I don't feel like I have enough energy to even get thru exercise?
  • Avatar
    amberburn  Jun 14, 2014 4:56 AM
    Fatigue friggin sucks and yes exercise can help but at times the fatigue is just a brick wall. Once you hit it its over until the next day or maybe even a few days later. If a loved one does not understand try to get them some literature or show them sites and article like this one. ( M.ostly S.ucks)
  • Judy   Jun 14, 2014 11:36 PM
    I was diagnosed 4 years ago with RRMS. My daughter had just started college and I live alone. Truthfully, getting diagnosed answered some questions for me... Almost a relief. I watched some of my friends go go go and I just couldn't keep up. I needed a nap! Now I know I wasn't just lazy... I really was tired! But like most others I have always just pushed on and lived my life as best I could. I really try to go easy on myself... Some days I feel pretty good so I really try to work hard and get stuff done. But I also take it easy on myself... The house and yard don't need to be perfect. Life will go on. I have to have energy to work so I make sure my weekends have plenty of downtime. My heart is really with those with little kids or other demands that just don't stop. Hang tough everyone!
  • 3sunrises  Jun 16, 2014 12:42 PM
    So nice to know that I am not the only one dealing with this. My family and friends don't understand how different my tired is from theirs. They don't get why I need to take a nap while they can push thru when they feel tired. Just needed some confirmation that this fatigue is real to us with this disease, and I got it after reading these posts. Good not to be alone.
  • tapla20  Jun 17, 2014 2:23 PM
    I was diagnosed with ms 4 yrs ago. My dr always asks if there is any new symptoms, but my inital symptoms were soo bad that even if I had something bothering me it wouldnt even compare. I do have some (they call depression) very irrated, snappy, that I take medicine for and I do have fatigue that I have been taking Amantadine, it deffinatley helps but I keep comparing myself to when i was well. I work in a retail setting and the hours are starting to bother. Everything is like a roller coaster and I cannot get myself on a schedule, which does not help with the fatigue but my managers do not understand. I was getting desperate so I had to try the mediation. Everday life adds to it of course but I have also heard "other moms are tired" or "others in college are tired". In my fight with MS, I have gotten an associates degree, certificate in opthalmic dispensing, and making my way through the state testing to get my NJ state license for optician. "Stay positive" thats what help alot!
    Thanks for letting me vent!!
  • Cherie corey   Jun 19, 2014 9:41 PM
    This is so true years ago when I was only on Medicaid they said they would not pay for my provigial because I could not work. They said you aren't working so why do you need anti fatigue Meds? Here's. So I now too just take over the counter stay awake..
  • Avatar
    rgum4181 (Randy)  Jun 20, 2014 7:46 PM
    Thanks for writing about this (fatigue). I am newly diagnosed (a few weeks ago) and have read everything I can to learn about this disease and what t expect, and as expected, I know everyone is different, but fatigue is the common thread. I travel internationally a lot and experience good doses of jet lag (worse flying west to east, than vice versa). So, somewhat used to this feeling, but the fatigue I have from MS is like the worst jet lag I have ever had. And…the problem is, it doesn't go away after a few days after a long trip. I guess the reason I'm writing is 1) I feel very alone, not knowing anyone w MS and have not had anyone to talk to about this and 2) I'm still trying to figure out what and when to share w coworkers, customers, friends, etc, assuming I will get the "oh, yea, I'm tired too", or "everyone feels that way". No, I don't think they will understand. And I also don't want any pity or to make a big deal out of the fact that I have a "disease", as if I expect them to give me special treatment or consideration. Its just very frustrating…..I leave for China tomorrow and not sure what to expect w jet lag mixed w MS fatigue. Should be interesting. But thanks again for writing this and to anyone that is "listening"...
  • Avatar
    angelashorts  Jun 23, 2014 4:48 PM
    I'm newly diagnosed and reading these articles and comments truly help me get through this disease. Fatigue is No Joke....my job is physically demanding as well as mentally demanding. The past couple of weeks trying to get back into the swing of things after a week long stay in the hospital has been extremely frustrating. I'm keeping positive, exercising when my not spasms or extremely fatigued. This is challenging however I will figure this out. I really appreciate this page, makes me feel not so alone.
  • Avatar
    angelashorts  Jun 23, 2014 4:48 PM
    I'm newly diagnosed and reading these articles and comments truly help me get through this disease. Fatigue is No Joke....my job is physically demanding as well as mentally demanding. The past couple of weeks trying to get back into the swing of things after a week long stay in the hospital has been extremely frustrating. I'm keeping positive, exercising when my not spasms or extremely fatigued. This is challenging however I will figure this out. I really appreciate this page, makes me feel not so alone.
  • Avatar
    angelashorts  Jun 23, 2014 4:48 PM
    I'm newly diagnosed and reading these articles and comments truly help me get through this disease. Fatigue is No Joke....my job is physically demanding as well as mentally demanding. The past couple of weeks trying to get back into the swing of things after a week long stay in the hospital has been extremely frustrating. I'm keeping positive, exercising when my not spasms or extremely fatigued. This is challenging however I will figure this out. I really appreciate this page, makes me feel not so alone.
  • Avatar
    angelashorts  Jun 23, 2014 4:48 PM
    I'm newly diagnosed and reading these articles and comments truly help me get through this disease. Fatigue is No Joke....my job is physically demanding as well as mentally demanding. The past couple of weeks trying to get back into the swing of things after a week long stay in the hospital has been extremely frustrating. I'm keeping positive, exercising when my not spasms or extremely fatigued. This is challenging however I will figure this out. I really appreciate this page, makes me feel not so alone.
  • Joe D'Ambrosio   Jun 26, 2014 8:39 AM
    I was diagnosed with MS on 9/22/13. I went to a few neurologists who confirmed and the type is SPMS. I am taking Copaxone (don't know why), Gabapentin for pain and Simvistatin for cholesterol and Vitamin D supplement as my blood test indicated my vitamin D was low. I am still working. Went for a therapy evaluation and will start speech and occupational. Have trouble walking, speaking, writing, trouble concentrating , headaches and always tired.
    I am trying to get all my blocks of information together before I decide my next step. Have LTD disability that I purchased after tax and have deductions each pay. I am 61. Any thoughts? Am I missing anything?
    Thanks
  • Andrea   Jun 27, 2014 2:07 PM
    This is not meant to be a "whine" but empathy. I was diagnosed in 2001 with RRMS, had a high pressure corporate law job and 2 school-age children. I agree that the extreme fatigue, as an "invisible" symptom, is one of the hardest to accept and the hardest for others to understand. I was fortunate that I was financially able to quit my job; it still took several years to relearn how much I can attempt in a day and when I overdo, not only do I pay the price, but anger and frustration causes others around me to pay a price too. People used to laugh and think I was joking when I said "don't call me past 9, that's my bedtime." I have been through breast cancer too in past year.

    Never having been very good at taking care of myself, I now try to be a bit more mindful that regular eating, rest, and "down time" (low stress, relaxation) are necessary for me rather than optional. I have hung up my Superwoman cape. I practice "one day at a time" as best I can and have learned to ask for help. I have a lifestyle that takes a fair amount of work, and I am sure the day will come that I have to simplify it more, but meanwhile I want to enjoy what I can. I have to take sleep meds to get enough rest, and cannot take the stimulants without insomnia. I agree that people telling you to exercise and be active (sure, and when I am worn out after aerobics class, who's going to go to the grocery store for me?) falls into the "you don't get it" category. Wish strength to you all.
  • Avatar
    clparker13  Jul 20, 2014 5:49 PM
    A friend introduced me to SPX Nutrition and it has helped me gain energy and curb my appetite, immensely. The NutriThin is a blessing. www.foreverspx.com I am 32 years old and was diagnosed with MS at age 25. My fatigue kicks my butt, but I actually took my first spin class in 7 years two weeks ago. I highly recommend it.
    The cool thing is they pay you to lose weight, too :)
  • roxannedarleen  Aug 8, 2014 12:38 PM
    Okay, so I really really need some feedback on fatigue. I was diagnosed with MS October 2011 and I have been really struggling with fatigue. I tried Amanadatine and Provigil both gave me severe headaches.

    I asked for Adderall and you would have thought I was asked for crack. I am a veteran so I go thru the VA for almost all of my healthcare stuff. I also work for the VA with a master's degree and I have Humana thru them.

    I finally convinced a VA neuro doctor to give me 5 mg of Adderall but that never really did anything so for over a year I am still battling fatigue. I have asked 3 different doctors, one neuro in Kc MO sent me to mental health doc to ask for Adderall, then he sent me back to the VA neuro doc that originally give me 5 mg Adderall.

    All I was asking for was 10mg time released to keep me a wake in the afternoons so I can continue to work and go home and clean or fix dinner. I need just some energy so I can have a life after 5 pm besides laying around tired from my day and get something done.

    Yesterday I spent an hour argueing with this VA neuro doc to explain my fatigue and he just didn't get it!!!! He actually told me to take this 5 mg time released and drink a cup of coffee when I get home!!!

    Omg, I was actually using the F word to this neuro doctor on several occasions. I was livid.

    What is the deal with neuro doctors prescribing Adderall for fatigue due to MS?????
  • AJ Myers   Jul 28, 2015 4:49 PM
    I am taking copaxone. it really helps give me energy i had ms for the past 15 years and just started on it.
  • Amber   Aug 23, 2015 12:36 PM
    I'm tired a lot too. I'm 33 and have had ms since I was 19 or 20.. I take the shot everyday copaxone and that helps a little bit but other then that I just drink a lot of coffee today I had 3 cups but I should have had four I'm still sleepy it really sucks, I need to be on Adderall or something.. my doctor wont give it to me, but I'm going to find a doctor who will, I'm not going to give up until I find someone to give me that medicine, because I not only have ms that makes you extra super tired I have add.
  • AJ   Mar 14, 2016 3:03 PM
    I have had ms since I was 19 and am now 33 I never have any energy unless I drink caffeine and even that is starting not to work. the doctor has me on two different energy medicines to help with the tiredness. I'm going to try swimming soon to see if exercise doesn't make a difference
  • susan   Oct 2, 2016 7:59 PM
    I have ms and am tired so much.
  • Mike David   Oct 21, 2016 4:16 PM
    Question is Everywhere that <a href="https://www.healthunits.com/fatigue/why-am-i-always-tired/"> Why am i always tired </a> fatigue syndrome is a complicated yet unknown medical condition which is characterized by at least six months of extreme fatigue and also known as systemic exertion intolerance disease (SEID). The fatigue is not reduced by rest and may worsen or be worsened by physical or mental exertion.
    The first thing to know about it chronic fatigue syndrome is that it’s an illness. The Institute of Medicine classifies it as a disease as it is characterized by abnormally low levels of energy deficit and they say that people should take it seriously. Apart from physical exhaustion, cognitive issues are also impaired and to such an extent that you may have difficulty putting a sentence together or reading something out of a book.
    The causes of chronic fatigue are yet unknown, although there are theories on how and why it happens. One of the common theories is that it is caused by viral infections. Experts say that mononucleosis (an abnormally high count of white blood cells in the body) may trigger the disease. It starts with flu like symptoms that keep growing worse over time.
    Inflammation has also been known to trigger chronic fatigue and simply walking for a few minutes can cause unusually high inflammation although, again it is unknown where this inflammatory response originates from.
    Chronic fatigue comes and goes as it wills. Experts say that people first develop it in their 20s or 30s. After a few months or years it disappears only to unfortunately resurface later in life, especially menopause seems to recur another phase of chronic fatigue.
    The problem is that most doctors don’t know much about it because the disease is not included in the medical curriculum so it goes unfamiliar with many doctors and this makes it difficult for them to find answers. But some experts have blamed it on poor nutrition, especially junk food, and the commonly observed sedentary lifestyle of nearly every person.
    Again, what is unfortunate is that there are treatments for it but none are FDA approved because proper certified studies and clinical trials have not been conducted and ultimately doctors are forced to provide medications for pain and fatigue which are not specifically for chronic fatigue.
  • Kim   Dec 3, 2016 8:43 PM
    Funny
  • Mike David   Dec 9, 2016 2:52 PM
    There are a few reasons you are feeling tired without any reason. One of them is anemia, which is a lack of red blood cells and conversely, oxygen from the lungs is not properly brought to the tissues and cells. Anemia may be caused by deficiency of vitamins or minerals, internal bleeding or chronic diseases. Women who are at “that time” of the month are susceptible to anemia as blood is lost during menstruation. Still, iron deficiency due to menstruation is less than in pregnant women or lactating mothers, as their body needs extra iron to maintain healthy blood levels.
    Things may also go wrong when your thyroid glands refuse to cooperate with you. Thyroid hormones, thyroxine (T4) and triiodothyronine (T3) are responsible for metabolic processes in the body. Too much thyroid hormone causes hyperthyroidism which speeds up metabolism while too little thyroid hormone slows down metabolism.
    Hyperthyroidism causes fatigue and muscle weakness and starts in the thighs. Doing energy demanding activities become difficult and other symptoms include weight loss, feeling warm, shorter menstruations, increased heart rate and thirst. Hypothyroidism also causes fatigue and muscle weakness. The symptoms are reversed to hyperthyroidism such as weight gain, feeling cold and longer menstruations.


    Reference : https://www.healthunits.com/fatigue/why-am-i-always-tired/
  • Deloris   Dec 17, 2016 1:52 PM
    I too was diagnosed with MS this year and I'm having serious diblitating fatigue. I cannot get up a lot of time and it's hard for me to make myself do anything even go to the bathroom. I have contacted my doctor and now I'm waiting on his response. Thank you for the information on MS because now I know that it's not in my mind. My family had been thinking I was nuts because I hadn't been able to get out the bed. I will stay in bed sometimes until late st night I don't get hungry because my appetite has pretty much diminished.
  • Dianna   Mar 28, 2017 10:31 AM
    I get so tired what food you think is best for me?
  • Kathleen   Aug 15, 2017 11:07 PM
    I was diagnosed as RRMS last December and went from being normal (although my kids would disagree) to being constantly tired. I had no idea I would feel like this. I am still working full-time which adds to the tiredness. I spoke with my specialist who prescribed some other meds that should help with the fatigue but isn't yet!!!!