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How do you know if your fatigue is MS-related?

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    #16
    Tired vs Fatigued

    I think I can actually distinguish the difference between being tired and fatigued.

    I have always been a type A personality. I was always involved in sports and worked a part-time job while in high school. I also worked 3 jobs to put myself thru my first 2 years of college. After dropping out to get married and have kids, I ended up divorced a few short years later. I found a secure full-time job with excellent benefits and when I finally got back on my feet, I finished my college degree while working a full-time job and a single mom of 2 toddlers.

    I don't remember feeling fatigued, maybe burned out sometimes. My drive to keep moving up the Corp Ladder and making a better life for my kids maybe distracted me from taking notice.

    After I finally landed a job where I was being groomed to take over as a corp manager, I suddenly started to notice that I was sleeping later on the weekends. Then, when I did get up, it would take another hour or 2 before I could really "get going". I had remarried by then and my husband was more Type A than I was, so he would get more done around the house/yard while I was still sleeping! I was just plain tired.

    With my new job, I would spend my winters in the office as a GIS analyst and my hot summers (SC)were spent out in a boat as a shoreline manager. I was athletic and used to the heat, so I was unaffected by the new physical demands of my job.

    However, after a few years, I started to just come home straight from the lake, take a shower and fall right asleep on the couch. I was just plain tired. We were coaching our daughters' softball team and I started missing out on practices and some games. Supper started to become more take out and fast food. I started putting on weight and I was thinking, ok, I'm in my 40's, my metabolism is slowing down and after all, I had been burning the candle at both ends for years.

    So, to me, that was just being tired. All those years of pushing myself were starting to catch up with me and I just needed to find a new strategy on how to boost my energy levels. My doctor put me on Wellbutrin and it did help. At first, I had so much energy it was insane. I started losing weight and found myself coming home from the lake and doing yard work before my showers. That's it! I just needed a little extra nudge to get me out of that funk.

    Then, months later, I began having these random episodes of waking up one morning and not being able to get out of bed. I'd be fine the night before and it was like waking up with the worst hangover I've ever had! When I would try to just go to the bathroom, I would have to take breaks and rest and felt like I couldn't catch my breath at ALL! This was definitely not being tired. This was fatigue like nothing I had ever felt before.

    These episodes came and went for about 8 years. I would miss weeks or months at a time from work. Each time, the diagnosis would be ambiguous....maybe Mono, maybe a mini stroke, maybe food poisoning, maybe Hepatitis A, maybe heat stroke.

    Luckily, I had a solid Short Term Disability policy with my employer and never missed a paycheck or at least received a partial check for most of the times. Of course, I paid for this insurance...it wasn't a "free benefit", but it sure paid off. Quick note...if your company offers any type of short or long term disability, sign up for it right away.

    Short story long, after finally being diagnosed in 2011 and beginning Copaxone right away, I still suffered 2 really bad relapses within the fist year. After the last one, I never fully recovered and after being put on light duty at work, just showing up at my office everyday was a challenge. The fatigue, weakness, left eye blindness, zero depth perception, tremors, just remained a constant. I had to give up my privilege of having a company vehicle and boat. I was too much of a liability.

    Finally, my doctor took me out of work indefinitely. Again, I am so fortunate to have that disability insurance. After being out of work again for 12 weeks, my employer retired me on Long Term Disability. I still receive 66 2/3 of my salary every month. My last day of work was March 3rd, 2013.

    Today, I'm actually tired and not fatigued. It's one of the first "good" days I've had since my last day of work.

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      #17
      I have two kinds of fatigue the kind that makes me feel like someone sucked all my energy out of my body . I even get to tired to eat making a sandwich is to demanding .

      Then I sometimes suddenly become so sleepy I cannot stay awake if I'm driving I have to pull over to sleep . I can barely put my set back before I fall asleep. I drive as a job this has made things very difficult .

      Anyone with the odd sleepiness problem ?
      A friend hears the song in my heart and sings it to me when my memory fails .
      (unknown)

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        #18
        I am sorry that the fatigue is so overwhelming. I take Provigil or Nuvigil for that, every day. Have you tried those pills? Good luck

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          #19
          I always say I can't lay down enough. I will
          Be laying on couch but it feels like I am moving
          So hard to describe it to someone who has
          never experienced it. Provigill helped a lot
          Now on adderal due to onset add. This also
          helps with fatigue

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            #20
            Originally posted by amyrising View Post
            My fatigue is much different than being tired. I feel like someone has hooked a vacuum up to my body and sucked every last bit of energy from my body. It makes me too tired to even cry. I just lay still for a while and let my reserves build back up. Then I can move from one couch to the other
            Thank you- you just described me exactly. And I'm too tired to cry, I read your post and laid here reserving energy to reply rather than cry.

            Reading this thread is helping me, I have kept a positive attitude but the past month especially, I've been feeling- well too tired too feel even anything- enough is enough with the ten ton quicksand.

            We all have our days, and when days turn into years and you can actually step back and see the progression from this disease, it's an eye opener. Despite every effort to get better!! And SO MANY people help one another, so thank you!!

            The fatigue is unbearable and no rx or supplements have helped- I've tried so many, so less, the whole game. Although. I will say DHA and EPA omegas help me think clearer.

            I used to be a marathon runner, fitness enthuse, am body concscience etc so less is more for me. Now it's become literally hard to get out of bed let alone walk much less else.

            Yes I've had the paralysis, blindness, whole nine like most of us- it's just this fatigue that is deadening.

            I have to laugh with some of the people's descriptions of this fatigue, thank you .

            So thank you for giving me more energy- support from people on this forum is uplifting for sure.

            Yeah sleep doesn't help the fatigue but yet it's the only thing my body is able to do sometimes. You know the drill.

            Thanks for letting me vent. Keep swimming swimming swimming! Keep calm and give thanks!
            There is always a rainbow!

            Comment


              #21
              in short, it takes tremendous mental effort to move an arm or leg. Also mine comes in "dizzy" flavor.
              First symptom 2000, dxed 2004

              Rebif 04-06, Denial 06-07, Rebif 07--9, Copaxone 09-13, Tecfidera 13-?

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                #22
                Difference

                For me, CIS/MS related,fatigue is crazy intense and sudden. I may not have been active but if I am hot, it can hit out of the blue. I'm strongly considering ADHD meds so,I can get through my day.
                And it is ever present in the background, just blah,
                Originally posted by hope32 View Post
                Just curious; how do you know when your fatigue is related to MS as opposed to not enough sleep, maybe dietary issues, nutritional imbalances, etc.?
                CIS DX 2013

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                  #23
                  Sleepy

                  Originally posted by tambrown View Post
                  I have two kinds of fatigue the kind that makes me feel like someone sucked all my energy out of my body . I even get to tired to eat making a sandwich is to demanding .

                  Then I sometimes suddenly become so sleepy I cannot stay awake if I'm driving I have to pull over to sleep . I can barely put my set back before I fall asleep. I drive as a job this has made things very difficult .

                  Anyone with the odd sleepiness problem ?
                  Lately, yes. Sudden and insane.
                  CIS DX 2013

                  Comment


                    #24
                    Hi there,

                    I just can't move my arms and legs they just don't move I just want to get up get dressed and go walk on the beach and I just can't do it sometimes.

                    Comment


                      #25
                      Fatigue.....like walking through mud..I feel like I'm moving fast enough..

                      Originally posted by tambrown View Post
                      I have two kinds of fatigue the kind that makes me feel like someone sucked all my energy out of my body . I even get to tired to eat making a sandwich is to demanding .

                      Then I sometimes suddenly become so sleepy I cannot stay awake if I'm driving I have to pull over to sleep . I can barely put my set back before I fall asleep. I drive as a job this has made things very difficult .

                      Anyone with the odd sleepiness problem ?
                      It's like my legs just won't move fast enough......not sleepy, just can't move as I'd like to.....literally dragging myself.

                      Comment


                        #26
                        Hello. I am a nurse and work full time. I am tired all day every day. I get plenty of sleep but still wake up tired. My husband who is often critical of my MS makes me feel guilty if I am on couch when he gets home he immediately will make a comment. "What's for dinner. You've been home for 2 hours and you couldn't plan dinner? " That fact is I just needed to sit for a while. I am also dealing with a ruptured disc from a sports injury last year. I also have teenage boy who I must keep track of.
                        Diagnosed 2006, RRMS.

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                          #27
                          Spoon Theory

                          My fatigue involves everything, depending on the day. Sometimes it's physical, where my legs don't work. So I do something sitting. Sometimes it's mental where I can walk around but don't really know what I'm supposed to be doing. So I make lists to help remind me. And sometimes I just run out of spoons altogether and it's system shutdown, so I go and lay down with my feet elevated until it passes. Most people don't understand fatigue - I suggest they look up "Spoon Theory," as its a good story to help describe what it's like.

                          May the spoons be ever in your favour
                          Dx 1991, remission til 2007 so now SPMS.
                          Currently on Tecfidera and Fampyra.

                          "It is the possibility that keeps me going - not the guarantee." N. Sparks

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                            #28
                            Sucked into the earth

                            I will feel as if I am being sucked into the center of the earth by a super-strong magnet that I can't resist - by my shoulder joints.

                            Or this is how I explained it to my mother years ago:
                            Think of the worst pain you've ever been in - you can't have your body parts touching each other, and you don't even have enough energy to cry. You lay there with your eyes closed, just breathing. Then subtract the actual pain sensation.
                            The look on my mother's face was sheer terror - and she'd been a nurse in the ER, OR and geriatrics (lots of strokes on her watch!). I kind of felt bad about that, but she's never made an accidental silly comment about MS ever, so I think it made an impression.

                            I also realized that MS fatigue can feel a lot like having influenza with a super high fever. But my fatigue is most frequently caused by overheating, so YMMV.

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                              #29
                              Great description

                              I feel like someone has hooked a vacuum up to my body and sucked every last bit of energy from my body
                              What a great way to describe the fatigue amyrising. I was using the following analogy; I felt like my body was glued to the sofa, but that has such a bad association with couch "potato-hood".
                              I really don't need any one believing I am just lazy. :/

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                                #30
                                Kryptonite

                                10-15 years ago someone here said fatigue is like you're Superman but there's kryptonite in the room. That captures it for me.

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