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    Worn Down

    I was dx with MS at the end of 2012. It was my worst nightmare because my mother had MS and was in a wheelchair for a long time. When she died the death certificate says she died of aspiration due to MS.

    I am not nearly as bad as my mom. I can walk OK and after acupuncture my balance improved enough for me to walk without my cane. I meditate and just started yoga. I am dizzy all day which is very uncomfortable but the worst thing for me is feeling sick all the time. It has worn me down. I want to lie on the floor and kick my arms and legs and throw one heck of a tantrum.

    I quit my dmd after 5 years because I remained stable. I am 71 years old and though it is scary, I hope the burn out theory is correct. I haven't had any relapses since my dx and have felt better most of the time without the side effects of my dmd. I have terrible insomnia and that doesn't help how I feel when I wake up. I just feel like I am at my wits end. I feel sick every single day. I don't want to burden my family so I try not to complain but they can see it.

    What do you do when there is nothing else you can do???

    #2
    I could have written your post. After all these years I guess you and I have connected and understand each other. Our symptoms are so similar.

    There's nothing much we can do. Just roll with it, rest, try everything we can. My dizziness has pretty much left off for awhile. But the exhaustion never stops. The insomnia is constant.

    You mentioned aspiration with your Mom. I have been choking and coughing like crazy lately. It might be allergens in the air.. not sure. But it's so scary. Takes my breath away and gives me a headache. I quit DMD too... years ago. Started having weird side effects and the neuro thought it wasn't doing me any good anymore. I am kind of in a holding pattern.

    Hope you're feeling better soon. Are you still in Italy?
    Marti




    The only cure for insomnia is to get more sleep.

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      #3
      I get the tantrum thing. I feel like letting out a primal scream now and then.

      Are you nauseated? Or are you feeling the overall exhausted? Is it something else?


      Originally posted by loopey View Post
      I was dx with MS at the end of 2012. It was my worst nightmare because my mother had MS and was in a wheelchair for a long time. When she died the death certificate says she died of aspiration due to MS.

      I am not nearly as bad as my mom. I can walk OK and after acupuncture my balance improved enough for me to walk without my cane. I meditate and just started yoga. I am dizzy all day which is very uncomfortable but the worst thing for me is feeling sick all the time. It has worn me down. I want to lie on the floor and kick my arms and legs and throw one heck of a tantrum.

      I quit my dmd after 5 years because I remained stable. I am 71 years old and though it is scary, I hope the burn out theory is correct. I haven't had any relapses since my dx and have felt better most of the time without the side effects of my dmd. I have terrible insomnia and that doesn't help how I feel when I wake up. I just feel like I am at my wits end. I feel sick every single day. I don't want to burden my family so I try not to complain but they can see it.

      What do you do when there is nothing else you can do???

      Comment


        #4
        Do you think the dizziness may be causing the sick feeling? Nausea?

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          #5
          Thank you all. The dizziness does cause some nausea but it is also just feeling yuk. I am also exhausted most of the time and the insomnia doesn't help. I have stomach/bowel problems and have tried different medications to help with that. My doctor has given me an anti-inflammatory which has helped some. Before that I was afraid to be too far from a bathroom in case I had an accident.

          Thank you, Marti. I feel the connection also. Yes, I am still in Italy. The yoga class I started was difficult because it was in Italian and though I can speak and understand fairly well now, this was entirely new terminology. So now I am doing it by myself with my computer.

          I feel like I should be more grateful that I am not worse than I am but never feeling good wears on me.

          Comment


            #6
            Hi again Loopey,
            I'm very sorry you are feeling so low.
            At times I can really identify.
            most of us would say they've just 'had enough' and are worn out at times too.
            It has helped me to vent on here with those who get it and not worry loved ones.
            i hope it helped you as well
            happy to listen anytime.

            Comment


              #7
              I have all those symptoms but every time a new symptom appeared the neuro added a new script.

              For the dizziness there is Mezcline (over the counter). For the nausea there is zofran.

              You sort of describe restless leg syndrome. Gabapentine helped with that.

              But in the precious thread we were talking about sleep. Lack of sleep really messes with our CNS.

              Comment


                #8
                Thank you Carolinemf and palmtree. I will try the Mezcline if I can get it here. I am really glad that I have a place to vent.

                Comment


                  #9
                  Loopey,

                  Been there myself. Not sure if you have tried CBD oil, or if you can even get it in Italy. I had terrible insomnia, which caused me to be super exhausted all of the time and added to my nausea. The first time I used the liquid CBD oil I slept all night for the first time in years. My wife woke up the next morning and thought I had died because I hadn't woke her up by getting up and down all night and I was still laying on my side. I don't use it every night any more, but when I do, it does make a difference. I also quit taking my MS medicine a few years ago. Had a few problems since, but feel better not using it. I would never suggest to anyone to stop their medicine, but so far so good for me.

                  Comment


                    #10
                    Thank you, Auctioneer. I have been using CBD oil for a couple of months. It usually helps my mood but it hasn't had any effect on my sleeping. I know there are all kinds out there and some are not very good. I got mine at a shop near my house. It is legal here but I am not sure about what brand would be best. I am currently using Enecta.

                    Comment


                      #11
                      Insomnia

                      I have a similar story. DX in 2012. Stable. Went off meds in 2017, had attacks, and am now fighting insurance for a good med. No measurable disability, but dizziness all the time.

                      That said, I did find a good solution to insomnia. I used the principles in an old book called Say Goodnight to Insomnia. It recommends sleep restriction. Works very well for me. I don’t get more sleep, but much higher quality rest in the hours I’m in bed

                      My other helper, when I’m in a noisy environment, is the Sleep With Me podcast. It bores me to sleep and gives me the weirdest dreams.

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