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The MS fatigue strikes without ceasing

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    The MS fatigue strikes without ceasing

    It absolutely amazes me how debilitating the fatigue associated with MS can be day in and day out!

    I actually got some good sleep one night and still woke up exhausted and dragging. If I hadn't experienced this for myself over and over I probably wouldn't have believed the stories I have heard from other MS-ers. It never ends. I'm secluding myself more and more. Not wanting to extend my comfort zone past my front door.

    Is this really a thing? It's so hard to believe that so many of us can feel this awful every day.

    I'd like to hear from you all on this subject... again. Hope you don't mind.
    Marti




    The only cure for insomnia is to get more sleep.

    #2
    Love it or hate it: Exercise

    For me and many others with MS, the fatigue is the worst part of it. A life-altering symptom for sure. Mild luck with provigel, but like any drug, your body can get used to it and so I don't take it any old time but save it for "special occasions".

    Everyone is sick of hearing this, but there is always exercise. I have had to kick myself harder and harder to get to the gym, but the rewards still outweigh the misery of exercise. Of course we should think of being able to exercise as a gift. I do know that being a couch potato was a luxury I could only afford when I was young and able. I only exercised to fit into a dress and to look "hot". Now it's to keep from declining.
    Tawanda
    ___________________________________________
    Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

    Comment


      #3
      Originally posted by Tawanda View Post
      like any drug, your body can get used to it and so I don't take it any old time but save it for "special occasions"
      Thanks Tawanda, I agree and try very hard to avoid any drugs as best as possible....

      Originally posted by Tawanda View Post
      Everyone is sick of hearing this, but there is always exercise... the rewards still outweigh the misery of exercise... we should think of being able to exercise as a gift... it's to keep from declining.
      The more exercise you do the more you learn. About your body, about your particular MS, about limits and the surprises! Good surprises, like the thought "I cannot do that!" becoming "Wow! didn't think I could do that."

      You also become innovative. You resolve to act and not be acted upon. As Tawanda simply stated, "...the rewards still outweigh the misery..."

      Comment


        #4
        I agree that exercise is the best medicine. I was skeptical before of this - how can I exercise when so wiped out? But slowly, I would do more, and it did help with the fatigue.

        I am struggling now, as tore the meniscus and 5 weeks into PT, 8 weeks out from injury. So I haven't been exercising for 2 months and really feeling the fatigue again. I just was cleared to start back up, as long as it doesn't aggravate the knee.

        So back to square one on exercise, but know it will pay off. Just have to go slow.
        Kathy
        DX 01/06, currently on Tysabri

        Comment


          #5
          Exercise Check-in available weekly

          Feel free to join us in our weekly Exercise check in. We're a small group. We set our own exercise goals and we decide if we met them.

          It helps me to hold myself accountable. I don't meet my goals every week, but knowing that I'll check in each week helps me to exercise more than I likely would otherwise.

          We can be found in The Wellness Forum.
          ~ Faith
          MSWorld Volunteer -- Moderator since JUN2012
          (now a Mimibug)

          Symptoms began in JAN02
          - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
          - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
          .

          - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
          - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

          Comment


            #6
            Originally posted by marti View Post
            It absolutely amazes me how debilitating the fatigue associated with MS can be day in and day out!

            I actually got some good sleep one night and still woke up exhausted and dragging. If I hadn't experienced this for myself over and over I probably wouldn't have believed the stories I have heard from other MS-ers. It never ends. I'm secluding myself more and more. Not wanting to extend my comfort zone past my front door.

            Is this really a thing? It's so hard to believe that so many of us can feel this awful every day.

            I'd like to hear from you all on this subject... again. Hope you don't mind.
            Hi marti

            Do you have any time of the day where you feel a little more energetic?

            My best time is in the early part of the day - after I'm awake for about an hour and I've had a cup of coffee. That is when I try to accomplish my most difficult tasks.

            I'm able to be up on my feet doing light activities for about 30 min at a time, throughout the day. After 30 min or so, I have a hard time moving around (motor fatigue) so I have to get in my recliner to rest awhile. No one has to remind me to rest often - I have no choice anymore.

            I don't get 'sleepy' tired, just muscle fatigue and weakness, which resting and cooling down helps to alleviate.

            Take Care
            PPMS for 26 years (dx 1998)
            ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

            Comment


              #7
              I that fatigue is the symptom that no one (other than us) truly understands. They try, but they think every symptom has to be permanent or progressively worse. They will never understand that it varies hour to hour.

              Exercise is good for fatigue, but only to a point. There is a fine line between beneficial and detrimental. And that line shifts. This is what no one gets, but us.

              I told a friend that the exercise was helping with the fatigue. When I mentioned one day that the exercise left me fatigued, she thought I was telling lies and said something like, I thought you said that the exercise helped fatigue. Said as if she had caught me in a lie. I’ve explained many times that it varies. I’ve given her articles on it. She will never get it.

              When it’s really bad, my motivation is zapped, too. Everything seems like too much effort. So going nowhere makes sense. Except for the worst days, though, getting up and out helps the fatigue. But I have to force myself on those days.

              Do you get out every day?

              Comment


                #8
                Responding to add that For years, I didn’t believe that exercise would help. I had always been a very active person, so I hadn’t had experience with exercise improving ability. I had been walking 5-6 miles a day before MS hit. That was 5-6 miles not counting the walking I did at work. I was on my feet at work 40 hours a week. I used a step counter to make sure I was getting enough steps, and I had more than enough for the day long before lunch.

                I’m telling that story to say that I was very reluctant to believe that forcing myself to walk longer distances again would help not hurt. If you’re not already exercising, adding a little when you can might help with your fatigue. Be warned that it’s a slow start, and try not to be discouraged. There were days that I wanted to call home for a ride. 🤣 But it got better.

                Comment


                  #9
                  I wish exercise was the answer for me. My whole life has been filled with exercise: swimming every day, calesthenics before swimming, ice skating and Puerto Rican Salsa dancing. I always parked my car as far away as possible so I would walk more.

                  Now, it seems whenever I push myself to do any exercise it backfires. Twenty wall push ups equals two days out of commission.

                  What else is strange is that I live in an area where a lot of people have MS. When we get together no one can relate to the fatigue. It might be cultural because they deny feeling tired when I see that look in their eyes like ‘I’m fading...’

                  On the other side of the coin I have just had an experience that makes me realize how important it is to keep moving our bodies. I just got out of the hospital to treat another opportunistic infection and stayed in bed for three days.

                  The last day I got up to take a shower. Showers are wonderful after being in hospital. As I was holding the sprayer over my head I could feel my arms getting weaker and weaker. groaned and pushed my way through it to finish my hair and everything, grabbed the towel, wrapped it around myself, found the closest wall, leaned against it and gently lay down on the floor.. I have no idea how much time had passed but I had a nice little nap. Crawled to the other wall with a grab bar, tried to pull myself up but the strength was not there. Just three days of inactivity had robbed me of so much strength.

                  Someone came in and discovered me and the hysteria that ensued was beyond belief. You would think they would just want to make sure I am ok and get me comfortably back in bed. But no! I had fallen(if you call it that) and that was a crime ie a hospital liability. They madly searched my belongings and accused my of bringing drugs into the hospital(i had not).

                  I hate the fatigue but I hate it even more when it is confused with drug abuse. I have heard a lot of stories about people with MS being dragged off to the police station for living under the influence of demyelination.

                  What is scary now is that I’m realizing that my arms are losing their strength no matter how many wall pushups I do. I just realized how important it is to keep exercising these muscles to offset what is being lost by demyelination.

                  Comment


                    #10
                    palmtree- sorry to hear you were in the hospital again. The shower incidence sounds horrible. I am surprised they let you shower by yourself after being bed ridden for 3 days. I have never heard of a staff being accusatory with a patient, unless the patient had known illegal drug use. I hope you complained about it to management.
                    Kathy
                    DX 01/06, currently on Tysabri

                    Comment


                      #11
                      Yes; I'm realizing, too, that regular, consistent exercise is important. I try to include both some cardio and some strength training.

                      I'm sorry you were treated so poorly at the hospital.
                      ~ Faith
                      MSWorld Volunteer -- Moderator since JUN2012
                      (now a Mimibug)

                      Symptoms began in JAN02
                      - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                      - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                      .

                      - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                      - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                      Comment


                        #12
                        Originally posted by palmtree View Post
                        Now, it seems whenever I push myself to do any exercise it backfires. Twenty wall push ups equals two days out of commission.
                        palmtree

                        I totally understand about 'pushing' yourself and the being out of commission that follows.

                        I had to learn how to navigate the fine line between PUSHING and pushing.

                        Eventually I found my limits, which do gradually change over time.

                        Take Care
                        PPMS for 26 years (dx 1998)
                        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                        Comment


                          #13
                          I have not been ignoring you all and your responses. I appreciate them all! I've just been too tired to think about typing much lately. My eyes hurt more than anything right now which cuts down on my reading etc.

                          I have tried exercise a little. I joined Silver Sneakers but have only gone to the gym twice so far. I do walk around at home a lot. And have done some gardening outside. With this insomnia I can only push myself so far. I don't sleep or sleep just a little but. Wake up exhausted. Or just fall asleep all day long. Sometimes meds help, sometimes they make things worse. You all get it right!

                          Anyway, I appreciate all the advice and the personal stories. Some of those stories are like living nightmares. All I know is that this kind of fatigue is unending and unbearable.
                          Marti




                          The only cure for insomnia is to get more sleep.

                          Comment


                            #14
                            Exercise is a big one. I also started taking 200mcg B12 sublingual a couple times a day when the fatigue got crazy. Also caffeine in what most would call "excessive" amounts. (1500-2000mg a day) It kept me going but didn't really deal with the underlying issue.

                            Now I'm on armodafinil which for me is working fantastically but it is pushing me past my limits and I find I'm just wasted at the end of a day. Also with your insomnia it might not be a great addition to your treatment plan.
                            Rise up this mornin, Smiled with the risin sun, Three little birds Pitch by my doorstep Singin sweet songs Of melodies pure and true, Sayin, (this is my message to you-ou-ou

                            Comment

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