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Please describe your M.S. related fatigue

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    #16
    all of you have explained your episodes of fatigue so well. I do love the "gravity is mad at me" quote! I feel like my body is made of lead.....and my ability to think clearly and sort through issues is a mess! I've had to break down my brain activites to one issue at a time. When and if I finish the one brain exercise, I move on to the next. It does make paying bills very hard.

    Seriously I get so frustrated I just quit! Then that gets me in trouble but what can you do? It's the way it is! I agree with one of the posts above.....when I have a good day, I go like mad and get as much done as is humanly possible!!!

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      #17
      I came across this several years ago, written about Lupus, but it makes sense for anyone with this kind of fatigue: http://www.butyoudontlooksick.com/ar...e-miserandino/

      (If the link doesn't work, Google "Spoon theory" and the first several links should take you there.)

      I've described the physical fatigue as what would happen if you had the flu, ran a marathon, and then helped someone move from a 4th floor walkup apartment to a 5th floor walkup apartment two doors down the street. You get so exhausted your body shakes, so tired you can't sleep, so tired it feels like gravity has double the pull on you that it should.

      The mental fatigue I've described as feeling as though my thoughts run on little tracks (like those Brio trains kids have), and those tracks have been filled up with oatmeal. It jams the wheels of the thoughts, and takes so much effort just to push one thought to where it ought to go.

      And, for me, either one can hit almost without warning. Some days, I feel "fine" (although "fine" has been downgraded over the years). And some of *those* days, I can be pretty active without consequences. Other days, I'll feel fine, and then I do something wild and crazy like try to get dressed, and I have to rest for half an hour. And then there are the days where just sitting up exhausts me.
      Accepting reality is not the same as wanting to have a problem. It means accepting something that will be happening whether I want it or not.

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        #18
        Just making a meal for my kids makes my skin hurt. My arms often feel like they are full of led. Just like others have said, I am not sleepy, but tired, weary. My legs start to tingle even more than they usually do. I can't even explain it aside from hurting skin, but it doesn't really hurt, just tingly like hurt. Feels like I have lifted a ton of weight hundreds of times. I have used the term bone weary or bone tired many times since my first major flare started at the end of December 2011.

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          #19
          MS Fatigue

          You have all given a very good description. My fatigue is so strong that when I take a shower I must sit rather than stand. When it is very bad, I will pass out any where in my house. I have been found by family members in the tub, on the toilet etc. Very dangerous. Also, I have been in two car accidents b/c when I reach my limit my blurred and double vision began. It is so scary that I am very scared to leave my home. Usually when it hits me hard I will flat line (pass out) for 48 hrs and then I will be okay for a couple days and then it hits again. I can take a B12 shot on Sunday and by Tuesday the following week I will flat line. It also makes my nightly vertigo unbearable.

          Mystery37

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            #20
            It's EXACTLY as Bluz said!

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              #21
              Originally posted by mystery37 View Post
              You have all given a very good description....

              Mystery37
              I never really considered the dangers of fatigue. That is seriously something we should all think about. Falling asleep in a bathtub or while driving sounds very scary. Do you realize that you are fatigued prior to driving and have the hopes of being able to make it, or does it occur while driving?

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                #22
                Originally posted by spoiledbrat View Post
                Do you believe it is different than when "normal" people get fatigued? YES!
                What is the typical response from others when you speak about fatigue? they work hard to understand and formulate an expression of compassion and understanding or, sometimes their eyes glaze over and they change the subject. Mostly- I never try to explain it or talk about it to people
                What are your biggest challenges when going through the fatigue? Not feeling bad about myself. Stopping myself when I need to stop. That's what my partner does for me these days. She gives me "mandatory in bed days"
                How long does it seem to last for you? It can be an hour, I'm currently in a run of over two weeks of almost completely debilitating fatigue.

                Stories and any circumstances you are willing to share are wanted also! how about a poem? I wrote it many years ago when I was doing physically better than I am now yet struggling so hard to wrap my mind around what was happening to me
                I used to ride my body
                like it was made of steel
                pushing it hard
                to really feel
                each filament of muscle
                as it worked and strained
                each long taut tendon
                till I could feel the pain
                of strength at all cost
                denying possibility
                of movement lost

                My body has insisted
                I drop out of the race
                that I respect her limits
                that I slow my pace
                days come upon me in which
                I move through thick air
                when a part may check out
                and Iím not sure itís there
                my step is uncertain
                my gait is off
                fatigue overcomes me and Iím forced to stop
                I look down at my body
                as she slows to a halt
                I fight off the guilt
                that puts her at fault
                I should finish that task
                I should run up that hill
                I should stay up past midnight
                I should learn that new skill

                f**k that

                she says as she puts me to bed
                she curls up in a spiral
                I move out of my head
                physical boundries dissolve
                spinning outward
                I slowly evolve into everything
                nothing
                into absolute peace
                when I stop mind resistance
                I find sweet release
                time dosenít matter
                which negates the pace
                the frenzy of movement
                the classic rat race
                so, the terror that maybe
                I might lose my walk
                one day wonít dance
                or possibly not talk
                all this still haunts me
                yet
                itís given me the gift
                of knowing momentum is pointless
                that it just doesnít fit
                the peace of stillness
                is where I find myself
                through my agony of fear
                it brings the longed for help


                blessed be,
                cara

                (no part of this post may be reproduced without permission)
                Compassion, forgiveness, these are the real ultimate sources of power for peace and success in life.
                Dalai Lama

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                  #23
                  Feel as if gravity is mad at me....love it; says it to a "t".

                  I also get the mental fatigue a lot....and the depression does not help. "Go to the gym for 15 minutes", "walk around the block", "help someone worse off and get your mind off your own troubles" (yes, a friend suggested this, which is not a bad idea, but...)--great suggestions--but even those aren't doable when I have fatigue. Not that I want to sleep all the time; sometimes I just want to stare at the wall.

                  What's maddening for me at times is that I am a voracious reader and have to read things a few times before I completely understand. This frustration makes me give up and not want to read....and no, I don't want to "listen" to an audio of the book. I'm stubborn like that.

                  **sigh**
                  Rule of Feline Frustration: When your cat has fallen asleep on your lap and looks utterly content and adorable, you will suddenly have to go to the bathroom.

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                    #24
                    Originally posted by cara_lea View Post
                    I used to ride my body
                    like it was made of steel.....
                    I love, love, love the poem! I sent a few people here to read it as well!

                    I was curious about your partners "mandatory in bed days". Did it use to sort of be annoying for someone to "make" you rest? I have that problem with my husband. His medication for me whenever certain things happen is to tell me to go rest. I do not know why it bothers me really, you would think I would just jump at the chance. I know part of it is my always having a lot to do. I know he means well, but I still cannot just accept it.

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                      #25
                      My neuro laughed at me when I described my fatigue as
                      "It feels like I'm walking against the wind all of the time"

                      He laughed and said.."It feels like what?"
                      It literally feels like that...like I am trying to move forward but some force is pushing against me.
                      My arms will get the lead feeling also and some days it seems like it takes all of my effort to just hold my head up, my neck gets so tired from trying.

                      I have also fallen asleep on the toilet, in a heap on the couch, sprawled out on the floor, waking up knowing that the last thing I was doing was playing with my cat....when it hits it hits hard that is for sure.
                      DX 10/26/11

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                        #26
                        fatigue

                        To me it feels like my legs weigh about 500lbs each and I feel exhausted from trying to 'lug' them around..

                        Sometimes it helps me to tell myself "it's just a feeling, my legs don't really weigh that much". That helps sometimes, at least for a little while
                        Susan......... Beta Babe since 1994....I did improve "What you see depends on where you're standing" from American Prayer by Dave Stewart

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                          #27
                          Ann Romney described it perfectly.

                          when you run out of energy, most people have a reserve tank. with MS, when you are out of energy, you are out. there is no reserve tank
                          Learn from yesterday
                          Live for today
                          Hope for tomorrow

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                            #28
                            Originally posted by spoiledbrat View Post
                            I love, love, love the poem! I sent a few people here to read it as well!

                            I was curious about your partners "mandatory in bed days". Did it use to sort of be annoying for someone to "make" you rest? I have that problem with my husband. His medication for me whenever certain things happen is to tell me to go rest. I do not know why it bothers me really, you would think I would just jump at the chance. I know part of it is my always having a lot to do. I know he means well, but I still cannot just accept it.
                            Thank you very much SB, I appreciate it. It's interesting to show it to people who truly get it.

                            Well, I'm not irritated at her because I just truly trust that she has my very best interest at heart, more than anyone ever has or ever will.
                            I am frustrated that I have to stop and rest but that is frustration at my body. The problem is that I just won't stop sometimes when I should and I've learned the hard way how bad that can be.

                            So annoyed at her, no; annoyed at the m.s., YES.
                            Compassion, forgiveness, these are the real ultimate sources of power for peace and success in life.
                            Dalai Lama

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                              #29
                              It always hits me like a wave of sleepiness....BUT WORSE...and i cannot stop yawning or concentrate....and all i want to do is lay down and rest....

                              My husband tells me that HE doesnt sleep more than i do and that i am using MS as a crutch....and that makes me want TO SLAP HIM OUT OF HIS CHAIR I mean, i would much rather do fun things or make sure my house is in order or play with my toddler...yet i cant function without taking a nap....even a 20 minute catnap sometimes helps.

                              My Dr. thinks i am right at the start of the disease however, i have had this fatigue for probably about 3-4 years. I used to work at an old folks home and on my lunch break i would sleep because i felt as if i was not able to do my job without one.and previous to that i was able to run off of very little sleep

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                                #30
                                @ Bops_mama - My heart hurt when you said that he said that. Some people do not like for anyone else to get sympathy except them, and some are just to harsh at the wrong times.

                                I know someone who every time I get a M.S. symptom within a few days they have the same problem...but they do not have M.S. or anything else wrong with them! But this person plays the victim a lot.

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