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    #46
    Thank You, Lindz28

    Originally posted by Lindz28 View Post
    Diane D, I pretty much have fatigue 24/7 also. Doesn't matter how much sleep I get I am still tired. I kind of figured some of the other issues I am having such as memory is probably caused by lack of sleep. I feel like I could deal with the other symptoms a lot better, pain, numbness etc. if I could just feel rested. That by far has got to be the worst, just always feeling like a gosh dang zombie.

    Called Dr. today because she had mentioned a medicine that isn't a stimulant that helps with fatigue. I guess they use it for people who have the flu but found out it gives people energy. I will never try a stimulant ever again. Just hoping my insurance will cover something else. I could not remember if she wanted to wait until after MRI or if I could get the meds and try it now. Would be nice if I could get them sooner rather than later.

    Well I hope you feel better, bronchitis and the flu is not a good combination especially with MS.
    I appreciate your response. I know it's weird, but knowing I am not the only one with these issues is helpful to me. No one wants to be the 'only' one. Actually, I know I'm not, but reinforcement helps. I don't expect 'fixes', this is indeed part of my MS. My Bronchitis is chronic, unfortunately. Taking antibiotics is a double edged sword. I get even more tired when I take them, but can't just let the bronchitis go. I never smoked, but have COPD also. I did get exposed to second hand smoke when I was young. I think it's just my own poor immune system though. I was dx'ed at 50 with MS. I had Rheumatic Fever when I was 3 yrs. old and a history of illness. Sometimes that the way it is.

    Thanks again, Diane
    You cannot dream yourself into a character; you must hammer and forge yourself one.

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      #47
      Don't give up hope...

      I struggle with fatigue every day. I am captive in my own home. The isolation is overwhelming and I am very critical of my fatigue - labeling it lazy, not good enough, etc. And I look at myself from the outside and it frightens me how small my life has become. But, it is so much better than it used was three years ago --

      I may be trapped inside but now I can wash the dishes every day (I get them done in stages), cook dinner for two almost every night, clean the cat litter almost every day (4 cats), do a load of laundry every other day... household stuff, and manage the bills -- this one is difficult. I take frequent breaks, short naps and meditate throughout the day.

      Three years ago I was practically bed bound by fatigue. I slept for hours a day and never felt rested. Most of the time, I spent days in bed and had a few good days on the couch. My dh did all of the cooking, food shopping, cleaning, helping with injections, laundry, etc. I would put a veggie burger on a skillet and have to sit down for the 3 minutes until I flipped it. I kept getting worse and I thought I was dying. The next step in my life that I saw was death, and I was mentally preparing for it. I had no hope at all and I was an emotional wreck as well - horrible anxiety and depression.

      This is going to sound so simple, but what helped me was changing my diet. Juicing vegetables - 9 cups a day, and avoiding dairy and gluten. I did this for a year while taking copaxone and my energy came back within a few months. Everybody is different, and this is what helped me. Having more energy I could move around more.

      I couldn't shake these horrible nightsweats I had from the Copaxone so I stopped taking the Copaxone and I got even better. My muscle tone, cognition, energy and mood increased.

      I'm still only moving at less than 50% of what I was pre diagnosis --but I feel twice as well as I did 3 years ago. I had disabling fatigue again a year ago during a relapse for about a month - I couldn't walk up the stairs without taking a break and sitting down halfway up. I was couch bound for a few months. But it remitted. I still do not take a DMD, have not needed one.

      So don't give up! I had given up. It was a family friend who told me about this diet, and I tried it and it worked for me. I am so grateful for that. I have hope that you will find what works for you.

      Comment


        #48
        Originally posted by timeuponaonce View Post
        Lindz28,

        The article your found on fatigue was very interesting.
        Thanks for sharing with us!

        10 years ago my neuro suggested I go to a sleep specialist and have a sleep study. Found out I had Sleep Apnea. Have used a CPAP machine for many years. Much less fatigue because of this, and for me taking Provigil also helps.

        Thank you everyone for sharing your experiences!

        Time
        My neuro sends all his MS patients for a Sleep Study. I literally could not stay awake, yet I felt like I was sleeping well. The sleep study showed otherwise.

        Apnea can be caused by an obstruction, but MS can cause Central Sleep Apnea which is more serious than OSA. (obstructive sleep apnea). With Central Sleep Apnea the brain "forgets" to tell the lungs to breathe...and as I said, I was not aware I was having sleep issues, I just knew I couldn't stay awake during the day. A CPAP or BIPAP (I started with a CPAP but graduated to a BIPAP because of increased Central Sleep Apnea) can help reduce the apnea. Now I find that I can go an entire day without dozing off.

        Unfortunately, this does not help the body fatigue and I still do things in spurts, and my body fatigues easily, but the sleepiness has eased.

        I know we're all different but had my neuro not insisted on a Sleep Study, I would have never been aware of my Apnea problem

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          #49
          I was dx 3 1/2 years ago at age 47. I had mild numbness that led to the dx that has not returned and minimal brain lesions that have not changed. I've been on Copaxone for 3 years and my primary sx have been memory issues though in the last year or so it seems like my fatigue has started setting in and getting worse.

          Since dx, I've changed jobs twice...first from a high stress to a much lower stress job because I wasn't managing well due to memory issues. Then, I took my current job out of state so that I could finish up my state retirement in my home state. This job has been stressful and challenging. I come home and can hardly get it together to make dinner let alone do anything around the house. It's an effort to get up and go to work each day because I am that exhausted. I'm hanging in there, but there are many days that I wonder how I'm managing.

          Comment


            #50
            It sucks!

            One time, right before my bigger symptoms started, I was moving a mattress up the stairs with my cousin. By the time I backed it into the bathroom to move it to it's new resting place, ?I was huffing and puffing as if I'd run a race. It was so bizarre to me because it came out of nowhere. Mattresses are not that heavy and I wasn't even on the bottom end. I had also been experiencing the ms hug. At the time, MS was so far off my radar screen I thought my bras were broken or something. Anyway, added to the general fatigue, I think the hug restricts our breathing.

            I don't know what to do about this really. My nerves are so bad dealing with health issues, I am afraid of stimulants. I usually just push myself to do the things I get the most from and pay the price for the next two or three days.
            You can't stop washing your feet just because you're afraid you'll fall in the shower.

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              #51
              Sometimes I need a morning and afternoon nap.

              I moved downstairs after I fell in 2011, I broke both ankles.

              Yeah, exhaustion is the worst! I don't know if I was ever this tired when I was working!

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                #52
                " I had also been experiencing the ms hug. At the time, MS was so far off my radar screen I thought my bras were broken or something. "

                I thought my bra was too tight for two years before I was dx'd ! Spent a lot of money trying to find a bra that was comfortable --- only to discover the problem was MS and a good old MS Hug !!
                Just had to share since we have that issue in common !!!
                Still have the hug - no longer spend money on new bras !!

                Comment


                  #53
                  i noticed the fatigue when i am experiencing symptoms or if i forget to take my meds. then symptoms will flare up and boy i get tired or visa versa. what i mean by the second part is when im tired my old symptoms flare up also.

                  I do have days when im not quite fatigued and i take advantage of it,but i pay for it in the end. I have to learn to pace myself.

                  A good example is the end of last week and into this week i was feeling good so i took advantage of it took a 5 mile walk, cleaned house, decorated for christmas and yes i paid for it starting yesterday and it also didnt help when i was almost up for 24 hours because of the burst of energy.

                  Now im trying to recoop, not working because my jerks , twitches. tremors and gait issues are flaring up.

                  Comment


                    #54
                    Me too

                    I was diagnosed just 3 months ago today. I too am soooooo tired. I hardly do anything yet feel like I have been going all day. My husband teases me because I wash 5 dishes and sit down and 20 minutes later wash 5 more......It takes hours to do the dishes but at least I am still trying to care for my family. The way I see it is that we do the best we can while caring for ourselves. We have to figure out our limits because we pay for it later if we don't. I have learned that the hard way! Good luck, I wish I could be more help. At least we are all in this together (though we wish we didn't have to deal with this disease).

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