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Please describe your M.S. related fatigue

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    Please describe your M.S. related fatigue

    If you could answer any of these questions or add you own details that would be awesome!

    I am curious how others would describe their fatigue.
    Do you believe it is different than when "normal" people get fatigued?
    What is the typical response from others when you speak about fatigue?
    What are your biggest challenges when going through the fatigue?
    How long does it seem to last for you?

    Stories and any circumstances you are willing to share are wanted also!

    I believe that maybe if we all try to explain it on one post, someone may google/search to learn about it and can read it. I have a very difficult time explaining to people why M.S. fatigue is more than just being simply "tired" or "sleepy".

    Every time I mention fatigue it seems the person I am speaking with says, "Oh yeah, I know all about fatigue." Or they just cannot seem to grasp how debilitating it can actually get.

    #2
    Ah, MS Fatigue. It is one of my favorite things to try to explain to people. And, I'm still baffled as to why my MS NP seems to think it would go away.

    I say - it's mind numbing and crushing. It's definitely NOT the same as being tired because "tired" goes away. The fatigue doesn't and it strikes after you've slept. It is without mercy in the least.

    A friend of mine has said..."It's like gravity is mad at her." That makes me giggle.

    The only people I have ever discussed this with that understand are people with MS or people recovering from a bad sickness or following surgery when they feel oppressed just because they are awake.

    Even my own MS specialist doesn't seem to "get" it and that is extraordinarily frustrating.

    My partner "gets" it even though she hasn't experienced it herself. That's a relieving thing.

    Other than that, when the fatigue has me feeling like I'm going to slide out of my chair? I just say I'm not feeling well.

    :-/
    Dx 4/02
    Brain & spinal lesions
    Current DMD: Betaseron (again)

    Comment


      #3
      Originally posted by jifr View Post
      A friend of mine has said..."It's like gravity is mad at her."
      :-/
      Great description. I try to liken it to wearing a lead apron (the kind they use at the dental office when taking x-rays.) But I like the gravity quote, because I can be in a chair and absolutely not able to figure out how I'm going to stand up because it feels like something's holding me against the chair.

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        #4
        Sometimes I feel as if I do not have the energy to breathe.
        But, I take a deep breath...and lo and behold, I can breathe.
        But....it just feels like it takes a lot of energy.

        I too have also used the term "mind numbing."

        How do I deal with it and people's reaction to it? I don't. I gave up trying. My kids think I'm lazy for complaining how tired I am when I only work part time. So I just never talk about it.

        My doctor's way of handling it is to give me drugs. Been on 3 for it. None of them have helped.

        I think the fatigue is the very worse part of MS. Because if you have some energy, you can deal with anything.

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          #5
          I get both physical and mental fatigue.

          Physical Fatigue ~ my muscles do not have the energy to continue on. Whether it is blow drying my hair, walking up a flight of stairs or getting dressed my body does not have the strength to complete these tasks. Simple events that the average individual takes for granted become chores for people suffering from MS Fatigue.

          Mental Fatigue ~ everything begins to blur, I read and then re-read information and still am unable to comprehend and I feel an overwhelming need to sleep. My cognitive functions have decreased significantly because of the Mental Fatigue.

          No amount of medication the neuro has prescribed me has helped...

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            #6
            WELL BLUZ---U have just discribed my fatigue to the T.

            I take a shower and then sit on my bed and ughhhhh I'm pooped!!!!

            Grocery shopping-do we really did to have food in the fridge. Gosh who's gonna put this stuff up?

            No, I don't try to explain it to others without MS, They just would not get it. It's hard for me to understand. My husband and my kids are very understanding. They new what and who I was before so they now this is beyond tired.

            Love this web-site, it helps bunches.
            DIAGNOSED=2012
            ISSUES LONG BEFORE
            REBIF 1 YEAR

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              #7
              I HAVE to lie down. I can't do anything else. It feels like their is a string attached to the top of my head inside my body that someone pulls, and I'm done. My husband will call and feel bad that he woke me. My usual response is that I didn't even know I was asleep until he woke me. I just pass out. It's more like being unconscious rather than just asleep.
              Dx 12/2006; first symptoms about 1984, but maybe earlier--on Gilenya and Ampyra.

              "God has a lot of explaining to do"--Frida Kahlo

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                #8
                I feel like I have taken a large dose of Benedryl but then have to stay up. I could fall asleep at any time. This makes driving home after work a little scary. Meds, first tried Provigil then Adderal, only help a little. Drinking more and more coffee only helps a little.

                Comment


                  #9
                  Originally posted by jifr View Post
                  Ah, MS Fatigue. It is one of my favorite things to try to explain to people.....

                  :-/
                  It is like gravity is mad... PERFECT! I never thought of it like that HA! I love it! When the specialist do not seem to understand makes it worse. You want the specialist to be compassionate and have empathy at least. It seems that some specialists just went through a list in college to see how they can make the most money, and not actually had a passion for the field they chose.

                  Comment


                    #10
                    Originally posted by LL60 View Post
                    Sometimes I feel as if I do not have the energy to breathe...
                    I get like that as well. I feel like breathing takes work. One day I even tried holding my breath for a moment thinking that maybe my natural impulse would kick in and the breathing would get easier.

                    I think I am going to stop trying to explain to certain people. I have explained more than enough times to the same people and they still do not get it. My husband acts like he gets it, but then he will tell me to just go to sleep then, and I am like I am not sleepy, I am drained. Then he will say it again. ARGH!

                    Having a little bit of energy is good. The problem is that becomes the time when a person will try to do everything they can because you never know when you are going to become fatigued again. And that is sort of going against the M.S. since there is also a rush you place on yourself.

                    Adderall is the first thing that worked for me even a little. It also helps cognitive. But it does not last all day and by the time I remember I can take another one it is only a few hours before bed HA! Even though it does not work every time, I am grateful when it does!

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                      #11
                      @ mercadies25 - My husband does the grocery shopping and I think the same thing every time he comes home. I feel since he went out and picked every thing up from the LONG list I made, the least I can do is help put every thing away! But then I am just sooo drained and do not feeling like doing any work. I will force myself to at least put the thing in the refrigerator, but even that is draining so I will wind up just taking every thing out of the bags for him HA!

                      @ CGMoonbeam - Wow! Unfortunately, I also suffer from chronic insomnia no matter what time it is. If I have been awake for 3 days and become very tired, I am able to just "pass out". However, it is never for more than 2 hours and then I am awake and fatigued again. That is even more difficult to explain.

                      People are always like, "Wait, you have fatigue and insomnia? How is that possible?" I have to tell them that fatigue is not just being sleepy and insomnia is the difficulty either falling asleep or staying asleep.

                      Comment


                        #12
                        FATIGUE

                        YOU ALL HAVE DESCRIBED WHAT I FEEL ONLY NOT ALL THE TIME. ONE OF MY DOCTORS GAVE ME NUVYGIL AND IT REALLY HELPED BUT MY INSURANCE COMPANY CLAIMS THAT THIS WAS NOT IT'S INTENDED USE SO THEY WOULD NOT COVER IT AT ALL. IF THEY JUST KNEW.

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                          #13
                          Treading water in the middle of a swimming pool full of treacle.

                          Comment


                            #14
                            Originally posted by rexhemi View Post
                            YOU ALL HAVE DESCRIBED WHAT I FEEL ONLY NOT ALL THE TIME....
                            Have you attempted to have your neuro fill out an exception form? A lot of insurance companies have a policy in which items that are not covered can have an "exception" for them to cover it. Contact your insurance company to check if they have something like this and their procedures.

                            Comment


                              #15
                              WOW BLUZ...You took the words out of my mouth! Exactly how I feel. I think this MS Fatigue might be the worst symptom of my MS. I simply can't explain it to people, I try, but it's almost like I can't find a word strong enough to explain just how exhausted my body and "brain" feels.

                              And it's so true, when I DO have a little bit of energy, I'm around the house like a mad woman doing dishes, laundry, cleaning because I know...it's not going to last very long. I left the house yesterday with a list of errands to run, I made it to ONE stop and had to come back home. Even my eye lids were so heavy.

                              It's so tough.

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