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    Someone please help me with this fatigue...

    I've read posts from tons of people who struggle with fatigue and exhaustion. I should understand that we are all victims of MS and this is a terrible symptom. But I just can't make myself believe that one disease like MS can cause this utter weariness all day, every day. For me it's not just a sleepiness kind of tiredness. My eyes are killing me all the time, I feel dizzy and off somehow... afraid to plan anything or get dressed to go to the store or the doctor... anywhere. I really have to psyche myself up just to run to the store that is a couple minutes away. Then the lights bother me and my driving is getting kind of dicey. But I have to admit, the cool air helps to perk me up a little. I just have no interest in doing anything social. Just too tired. Ringing in my ears all the time. I've had that checked out and there doesn't seem to be any physical reason... no ENT problems. Of course, that throws me off too.

    Someone please just tell me this is "normal" for MS. Does this kind of fatigue come from a lesion? Where would it be located? I'm sorry to whine. I just want to understand this and learn how to deal with it. Seems like I tried Provigil years ago, before I was really, really seriously worn down.

    Thanks for listening.
    Marti




    The only cure for insomnia is to get more sleep.

    #2
    I can tell you this is "normal" for my MS...even the ringing in the ears (I was even checked to see if it was caused by a tumor as this particular symptom came on so fast with hearing loss). I feel you when you talk about psyching yourself up to get dressed, go to the store, etc. To wake up feeling just as beat as when I went to bed is like my own MS version of "Ground Hog Day". I, too, have tried everything. I guess Provigel worked the best, but not even close to my pre-MS energy. So even that lacks and I experience somewhat of a crash the next day.

    I do not have any answers. I just wanted to say I did not feel this way until the MonSter. If fatigue could be "cured" I could actually live with the rest of it. Fatigue devoured my life. And now the holidays are coming...yippee!
    Tawanda
    ___________________________________________
    Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

    Comment


      #3
      Originally posted by Tawanda View Post
      I can tell you this is "normal" for my MS...even the ringing in the ears (I was even checked to see if it was caused by a tumor as this particular symptom came on so fast with hearing loss). I feel you when you talk about psyching yourself up to get dressed, go to the store, etc. To wake up feeling just as beat as when I went to bed is like my own MS version of "Ground Hog Day". I, too, have tried everything. I guess Provigel worked the best, but not even close to my pre-MS energy. So even that lacks and I experience somewhat of a crash the next day.

      I do not have any answers. I just wanted to say I did not feel this way until the MonSter. If fatigue could be "cured" I could actually live with the rest of it. Fatigue devoured my life. And now the holidays are coming...yippee!

      Thank you so much. It's comforting to know someone understands. I know a lot of people on this board go thru this every day. I just have a hard time convincing myself that it's all MS related. I always say if my eyes didn't hurt so much I would be okay. Same thing as "curing" the fatigue.... I totally get you. And every year the holidays make things worse. I can always feel the anxiety and pure exhaustion coming on around October due to the holiday rush. I'm beginning to give it all over to my kids. I sure miss all the baking and cooking. That was my only talent and now it's taken away from me. Thanks so much. Happy Holidays.
      Marti




      The only cure for insomnia is to get more sleep.

      Comment


        #4
        I feel for you. I have had that type of fatigue before. Now, in phase where have issues, but not as bad. It's a little worse again, but for me, I think daylight savings time is the cause.

        I feel worse if I don't force myself to walk. We have a dog, so he gets me out. But he is almost 14, so we both walk slow, but I am out. My neuro keeps telling me exercise helps, but some periods, just can't.

        Do you get your eyes checked? I had sleep fatigue, turned out my eyes were dry and not making enough tears. Take xiidra now. So still have fatigue, but not where I could sleep round the clock.

        Took Provigil for years, but it lost its effectiveness for me.

        Hope it lifts for you. As hard as it is, let your family do things. If you miss baking, maybe you could do a cookie day. My family has one for rollouts. Everyone brings dough, but I don't. I usually wind up doing one tray, but gives me the feeling of participating. I sit and watch some, then some years, go lay down in another room for the quiet and nap, other times, leave early.
        Kathy
        DX 01/06, currently on Tysabri

        Comment


          #5
          Originally posted by pennstater View Post
          I feel for you. I have had that type of fatigue before. Now, in phase where have issues, but not as bad. It's a little worse again, but for me, I think daylight savings time is the cause.

          I feel worse if I don't force myself to walk. We have a dog, so he gets me out. But he is almost 14, so we both walk slow, but I am out. My neuro keeps telling me exercise helps, but some periods, just can't.

          Do you get your eyes checked? I had sleep fatigue, turned out my eyes were dry and not making enough tears. Take xiidra now. So still have fatigue, but not where I could sleep round the clock.

          Took Provigil for years, but it lost its effectiveness for me.

          Hope it lifts for you. As hard as it is, let your family do things. If you miss baking, maybe you could do a cookie day. My family has one for rollouts. Everyone brings dough, but I don't. I usually wind up doing one tray, but gives me the feeling of participating. I sit and watch some, then some years, go lay down in another room for the quiet and nap, other times, leave early.


          Kathy I am so glad you mentioned daylight savings time. Ever since we changed the clocks back the days seem to go on forever. One day just seems sooooo long! I see the eye doctor yearly, and yes they are dry. I take lots of drops. I also have dry mouth, probably due to the very few meds I take. Thanks.
          Marti




          The only cure for insomnia is to get more sleep.

          Comment


            #6
            Addendum to original post.

            I forgot to mention that I am always moving. I pace around the house all day, especially when my husband is sleeping (he sleeps a lot). Some days I'm just kind of hyper I guess. Every time I think of something we need I walk all the way to my purse and write it down instead of just using a note pad, which can be found just about everywhere! It kind of wears me out, but I can't stop myself. And, in the winter, the cool air makes me perk up a little. At least for awhile.
            Marti




            The only cure for insomnia is to get more sleep.

            Comment


              #7
              It's no fun - so sick and tired of feeling sick and tired.
              I understand the going back and forth. Usually because the effort of wheelie-walkering makes me forget why I needed to move in the first place.
              Showers are a living hell.
              Summer in Goondiwindi is horrendous. Winter, on the other hand, seems to bring on spasticity.
              I don't know which drugs are the best to take. Uppers need downers and then you wind up like Elvis. Good luck.

              Comment


                #8
                Definitely feel your pain!

                Fatigue has been my most bothersome issue throughout my years of MS (14+)!
                I wish there was a magic pill we could take. Many days, it’s the need of my dog to go potty that is the only reason I pry myself out of bed.
                I find it comes and goes in random cycles. Sometimes I can go a couple weeks with no naps and other times I need 1-2 naps a day plus 12+ hours at night.
                The one suggestion I do have is to make sure your Dr checks your vitamin levels. My vitamin D is routinely an issue and low levels do cause fatigue.
                Best wishes or should I say sweet dreams? 🤪 Hugs,
                Kris

                Comment


                  #9
                  I could have written your original post

                  Totally understand where you’re coming from. The fatigue is definitely my worst symptom, even though I require mobility aids when I leave the house.

                  I am blessed to have a neuro who truly cares how I’m feeling and is willing to experiment with meds for symptom relief. We recently adjusted me to a 20mg Adderall dose first thing in the morning, along with my Ampyra and antidepressant.

                  It’s not the extended release, so I have the option of another half dose after lunch if I have a busy evening, but I don’t usually do much after dinner so I don’t bother.

                  This change (was on 20mg ER before) has made a HUGE difference in my energy level through the day. It kicks in earlier after I take it, but doesn’t last so long that I’m too wired for bedtime.

                  My other huge issue is that I wake up feeling just as tired as when I went to bed, which makes it so hard to get up in the morning. (I’m lucky not to have to be anywhere, usually, but that also means I don’t have external motivation to push me.)

                  I’ve discovered that I tend to wake up overheated after spending the night under the comforter, with the addition of two cats for even more warmth. So when I wake up, I kick off the covers and listen to a meditation or motivational message on my phone. After 15-20 minutes, I feel much more alive and can more easily push myself to get moving.

                  I hope my experience helps someone!
                  ~Jenny~
                  Diagnosed 12/2010
                  Copaxone 1/2011

                  Comment


                    #10
                    Thank you all so much. There is just no real fix for this and now, with Christmas coming soon, I am extra, extra tired and anxious. Every year I know this is coming and I can't help myself from being worked up over all the details of the holidays. This fatigue is absolute torture! I notice my dizziness increases with anxiety too.

                    Anyway, I appreciate all the replies and the suggestions.
                    Marti




                    The only cure for insomnia is to get more sleep.

                    Comment


                      #11
                      Originally posted by marti View Post
                      Addendum to original post.

                      I forgot to mention that I am always moving. I pace around the house all day, especially when my husband is sleeping (he sleeps a lot). Some days I'm just kind of hyper I guess. Every time I think of something we need I walk all the way to my purse and write it down instead of just using a note pad, which can be found just about everywhere! It kind of wears me out, but I can't stop myself. And, in the winter, the cool air makes me perk up a little. At least for awhile.
                      Any chance this is akathisia?
                      He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
                      Anonymous

                      Comment


                        #12
                        Originally posted by Jules A View Post
                        Any chance this is akathisia?


                        I looked this up and it doesn't fit with me. But it's interesting to know there is such a thing. Thanks.
                        Marti




                        The only cure for insomnia is to get more sleep.

                        Comment


                          #13
                          IVIG has eliminated my ms fatigue. Completely.

                          Comment


                            #14
                            Originally posted by Poolwatcher View Post
                            IVIG has eliminated my ms fatigue. Completely.

                            Sorry.. don't know what that is.
                            Marti




                            The only cure for insomnia is to get more sleep.

                            Comment


                              #15
                              IVIG is an infusion of immunoglobulin. It is an MS treatment, also a treatment for Common Variabke Immune Deficiency , and Stiff Person Syndrome.

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