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Fatigue

Why Are We So Tired?

Have you been asked, “Why are you so tired all the time,” before? I have… more times than I can count actually. But why are we so tired all the time? How can we explain that it’s not just the MS fatigue by itself?

I don’t know about everyone else, but I suffer from MS fatigue greatly. I’m actually on a medication to help with my fatigue, so people wonder HOW can I be tired, when I’m on a symptomatic treatment for it.

It’s easy for me to answer in my head but it’s hard to explain this outright to other people with MS, or those who are just wondering in general.

So let me go a little bit in depth about this. For one, even though I am fatigued throughout the day, when I lay down at night to go to sleep, it’s not easy. I can’t get comfortable, I’m in pain, and my mind won’t shut up and the list goes on. So even though I do my best to get a good night sleep, it’s easier said than done.

So when I wake up in the morning, it takes a bit for me to roll out of bed. I need my coffee, I have to take my medicine… and a lot of the medications we are prescribed, we need to take food with. So it’s not just a get up and go routine, it’s a timely, exhausting routine just to wake up to begin with.

Now, did you notice how I said, “a lot of medications?” This needs to be kept in mind to everyone who is trying to understand someone with MS. Now, not all of us have a pharmacy at home like I do. (Yes, I call it my personal pharmacy, because I have that many medications.)

So all these different medications I have to take, have side effects. A lot of the medications prescribed out there have the caution that it can make you drowsy. No big deal right? But what if you are on multiple medications that can make you drowsy? The drowsiness probability percentage rises. So even though I’m on a medication to help with my fatigue, what I like to call ‘uppers’, I’m also on a lot of ‘downers’ as well. For example: spasticity meds; pain meds; arthritis meds etc. So my fatigue medicine is not only trying to help with my fatigue caused by MS, but it’s also working against an army of downers.

Then you have to look at the outside factors that could be contributing to our energy level. Is it extremely hot outside? Because for me, when it’s summer time in Texas, it doesn’t matter if I’m hiding inside, the weather still affects me and makes my fatigue worse.

Another outside factor would be, has there been a current weather change? I love Texas, born and raised, but boy do we have some bipolar weather. It can be 70 outside one day and 35 outside the next. When the weather changes, especially drastically like I just explained, it really messes with my energy level.

Now we need to look into our daily schedule. What do we have to do that day? Work, grocery shop, clean the house, laundry… all of these things that need to be done, reduce my energy level, as I’m sure it does others as well.

Even if we have to go to the doctor that day… it can be tiring. We have to make sure we have our medication list, we have to make sure we get there on time, fight traffic, etc. Now, I am a stay-at-home mom, so I don’t have to get ready everyday to GO to work… so I like my work attire of lounge clothes. But I don’t want to go out looking like a hobo or anything, so I try and make myself look decent. This, again, takes away from my energy level.

Now if we look at internal factors… it’s that time of the year, so allergies are bothering a lot of people. That makes me tired, especially if I have to take an allergy pill because of it.

As most of you know, I do volunteer work from home for MSWorld. So if I have a busy day with tasks I’m doing, I might have some issues with my cognitive dysfunction. Good thing about volunteering with an organization that is run by all volunteers who live with MS, is that they GET IT. For that, I’m blessed.

There is another internal factor that sort of coincides with the factors I’ve already named. All of the factors I’ve listed tend to cause stress. Not just stress on the body, but mental stress. When I’m stressed, I’m tired. If I’m really stressed, it causes a migraine, which makes be even more tired.

Doesn’t it seem like a never-ending cycle?

So, if I have some event coming up, I try to ‘rest’ as much as I can before doing what I have planned. Even though I rest for the upcoming planned event, I will be tired a few hours into it. I also know that by doing certain activities, I will ‘pay’ for it the day after or days after. Just recently, I went out dancing with my husband and friends. I had a blast; I love going out to dance. This was on a Friday. I agreed to go, even knowing that I would be spending my weekend recovering.

So yeah, even though I “seemed fine” the other day when you saw me out, that’s because I put on a happy face, had fun while I was doing it, but I knew I was going to pay for it. I can’t do back-to-back events that use a lot of energy, or require me to do a lot of physical activity. If I have to spend the weekend paying for ONE night out… I don’t even want to know what would happen if I did high activity things two days in a row.

If I have thing planned in advance, I will nap before them. So that I’m not falling asleep while I’m out and about.

So, yes… I come off as a ‘home body’. But that’s because it’s what is easiest on me to do. Doesn’t mean that I don’t want to hang out. Come over and be a ‘home body’ with me… or if we go to a friend’s house, where I know I can just rest while interacting with others… it’s much easier to do than high activity plans.

Okay, I’m rambling now. I could probably talk about this subject for 10 days straight, but that would be a REALLY long article, now wouldn’t it?

Here is a song that I like to sing in my head or listen to when I’m EXTREMELY tired.

Sick & Tired by Cross Canadian Ragweed

Stay well & Happy Holidays!

xoxo

Ashley Ringstaff

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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

  • dxrfk3
    1 year ago

    Ashley, I can relate to so much of what you said. I take a pharmacy of medications, too, for a variety of problems. I take four just for trigeminal neuralgia, which is result of the MS. ALL of them cause drowsiness, dizziness, weight gain, etc. Fun stuff. I’ve gained about 20 lbs. in less than a year. It doesn’t help that I’m so unmotivated to work out, even though I purchased a treadmill earlier this year. I have trouble sleeping as well (insomnia actually runs in my family), so about 20 years ago my PCP prescribed Trazodone before bedtime. It works like a charm. I retired two years ago from university teaching and was lucky enough to be rehired part-time teaching online, so now I work from home. That helps a lot. I could tell that my cognitive decline was affecting my classroom teaching: searching for words, losing my train of thought, etc. Not what you want a bunch of judgmental college students seeing. And the HEAT! I live in Texas too–Lubbock, in west Texas–and it is super hot and dry (thank God it’s not humid though–CANNOT tolerate!), so I pretty much avoid going out except in the early morning hours. The minute I step out of the car I’m so dizzy I feel nauseated. I use a cane during those times, and I finally recently got a handicap tag, which is great. Thanks for sharing your experiences; it helps so much to know you all GET IT!!

  • Ashley Ringstaff moderator author
    1 year ago

    Hello Fellow Texan!
    I’m sorry to hear that you are dealing with the trigeminal neuralgia… It stinks that we try to treat a symptom … and then we get 4 more ‘side effects’ with each medicine at minimum.

    I’m glad that you are doing well with your insomnia treatment as well.

    I try to do games and such on my phone/online to help keep my mind fired up and challenge myself. Seems to be working.

    Looking forward to fall!!! Best time of the year in Texas…. mostly lol

    xoxo
    Ashley Ringstaff

  • Stephanie J
    1 year ago

    I suffer from horrible fatigue and this article sure helped explaining it because I never could! I’m so sick of being tired and looked at like a lazy bummed! I’m not lazy I do the best I can and I miss me too! I take meds to help but I still am a long way from the old me…

  • Ashley Ringstaff moderator author
    1 year ago

    I’m sorry to hear that you have to deal with fatigue. It’s the worst… I feel like sometimes I can just lay in bed ALL day and still be tired.

    On the whole being called ‘lazy’ subject, I wrote an article just for that…
    https://multiplesclerosis.net/living-with-ms/yep-im-lazy/

    I also have an article for explaining MS symptoms, if you’re interested. https://multiplesclerosis.net/living-with-ms/explaining-ms-symptoms/

    Wishing you all the best.
    xoxo
    Ashley Ringstaff

  • DaveR
    1 year ago

    Like yourself I was diagnosed with MS back in 1985 and whow how the drugs have changed. I used to love to run but the MS shut that down because of my lack of coordination. I tried provigil for many years but then I started having more brain fog so I switched to Nuvigil which isn’t as strong but it helped clear my mind. The best thing I found is just keeping up on exercise. I have an industrial cooling vest which really helps hot days, and I found comfort in walking my dog. I have had four different dogs since I came down with MS and unfortunately my newest one walks great but because my wife became sick his training has not been what I was used to doing for my dogs. I came down with ulcerative colitis and in 2000 I had a surgery to correct it but unfortunately side effects from drugs pushed in my spine made the MS extremely active. I took the newest MS therapy drugs which helped me get rid of my cane which being bull headed I refused using a wheelchair. I was told I should not be able to walk because my brain and spine has been distroyed but I refuse to accept that fate and I will not allow my wife of 35 years to have to take care of me. I try to exercise daily on a bike and Bowflex and as I said I take my dog for daily walks no matter what the whether is like which is rough at times in Wyoming. Because my lymphocyte count is so low from the MS therapy drugs I asked my neurologist if I can go back on Copaxone which worked for me and it doesn’t lower those counts. The one thing I have learned since I came down with MS is researching drugs and having a neurologist that is whiling to listen to you makes me clam down and accept what the MS does. I hate MS, I hate having a bag attached to my stomach and I really hate the fact I have to use a catheter to empty my bladder. Those things are something I need to do to stay alive and I know it is rough but force yourself to workout every day doing something to keep what muscle you have left alive. In 2000 I went from a muscular man who had a 49 inch chest and 29 inch waist that played rugby in college at 220 pounds and I went down to 152 pounds and I lost all my muscle tone. As you know MS first hits the body then shuts down any ego a person has and we all need to be ready to accept what we have left send keep pushing ourselves. If not the MS wins and that is something I just cannot take. Keep smiling and just do as much as you can and personally I wish I was coordinated enough to do the yoga and Chi but I keep trying in the privacy of my home where I won’t get embarrassed by doing it wrong. They are great for rebuilding some coordination and I am not worried I my home when I fall over trying different things. Tuck and roll is basically what I learned really well over the years. I have bruised my ego, bumped my head and bruised some ribs but I have not broken any bones falling by remembering to not stick my arm out when I know I am going to fall. I am sorry if I miss spelled anything in this letter but not working since 2000 has made me a little less educated then I used to be. My eyes keep going down lines so reading is harder then walking some times. Stay strong and just don’t give up and don’t let anyone tell you that you shouldn’t be doing that. Do what makes you happy and just try to increase the quality of your life doing what makes you the happiest.

  • Ashley Ringstaff moderator author
    1 year ago

    Thank you for sharing your story! I, too, try to work out everyday… I was at a point where I lost so much strength and I was just not wanting to do anything. I felt like I would embarrass myself at the gym again and again, because I did it one time just doing a simple lunge and my face met the floor.

    I’m glad you have a great relationship with your neuro and that he or she listens to you and your opinion when it comes to your treatment options.

    xoxo
    Ashley Ringstaff

  • GN Glaser
    1 year ago

    I can’t thank you ENOUGH! Of all of the MS fatigue (lassitude) pieces I’ve ever read, this is the BEST. What you describe is pretty close to exactly what I go through each day! People are understanding but I’m not sure how many REALLY get it. Your words have given me a sense of calm today. THANK YOU!

  • Ashley Ringstaff moderator author
    1 year ago

    Hey! I’m glad you enjoyed the article… although I’m not glad for the reason.

    MS Fatigue is no joke… and it’s so hard to describe, especially when we are just too tired to even put it into words.

    xoxo
    Ashley Ringstaff

  • Steve
    5 years ago

    I have had MS for 35 years. It’s the progressive (not acute) kind, and I am still ambulatory but walk with a very ungainly limp on my left side. I do have trouble sleeping sometimes because of a “restless” left leg, but oddly enough I have never felt the kind of fatigue described by others. I hesitate to draw conclusions based on just my own experience, but I’m wondering if it’s because I don’t take any medications at all.

  • Ashley Ringstaff moderator author
    5 years ago

    Best of Luck to you in your journey! I just wish that there was something available for those with progressive forms of MS…

    xoxo

  • AJoy
    5 years ago

    EXACTLY! Thank-you for putting it SO well! I have refused to use many of the meds for the spasticity and pain because I already need meds for the fatigue. I take the “uppers” in the morning and afternoon, then the “downers” so I might be able to sleep. I WISH that I was actually able to NAP, lol. I can lie down for an afternoon, completely exhausted, and still not be able to sleep, brain racing, can’t get comfortable, all the usual, lol.
    Thank-you for letting us know we are not alone!

  • Ashley Ringstaff moderator author
    5 years ago

    Oh I hate that… not being able to get comfortable. I’m like so tired at times, then I go lay down… and mind is like, nope I don’t think so. UGH the frustrations!

  • teresal
    5 years ago

    I just love Ashley’s articles. She tells it like it is, or at least like it is for the most part with me. I am sure she is considerably younger than I am (I am 59), but I was diagnosed in 2010 like she was, but through history believe I may have had MS some 19 years previous (very slow progression) when I had two little boys. I so appreciate Ashley’s perspective, and it is nice to read something I feel myself. Thank you for your insight.

  • Ashley Ringstaff moderator author
    5 years ago

    Aw! thank you for the kind words. I’m glad that my writing has helped you in any positive manner.

    I’ve learned that the age difference between patients, isn’t really anything, because we are all living with this MonSter… and we can all support one another in that journey.

    Best Wishes!

  • SCMPrincess714
    5 years ago

    OH MY GOD, SOMEBODY WHO ACTUALLY GETS IT! I’m SOOOO tired of having to explain to people why I’m so tired and why after one little thing it takes me days to receive from it. It’s not that I’m being lazy but it totally wears me out. Thank you for this article. I think I’m going to put this on a t shirt: I’m Not Lazy, I Have MS.

  • Ashley Ringstaff moderator author
    5 years ago

    It’s exhausting trying to explain this over and over and over… UGH! No worries about the typo – I call it MS typonese, when ever I have a typo! lol I think there are shirts out there with that… I work on a cafepress store for MSWorld, if you wanna see if it’s on there. http://www.cafepress.com/msworld1996
    Happy Holidays!

  • SCMPrincess714
    5 years ago

    *it should say recover, sorry about that. ☺

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