Announcement

Collapse

WELCOME TO OUR NEW HOME!

Hello MSWorld Members,

Welcome to our new home! We hope you love it as much as we do!


we promise.

to offer current and relevant information.

to grow a community built on positive and affirming support.

to showcase member creativity.

to provide safe chat rooms.

to provide well moderated forums.


we believe that what we give as a community comes back to us.

welcome to MSWorld on this journey through a different lens. together. we are msworld.
we are. community.


We appreciate your understanding as we finalize our new home. Our arcade is still currently under construction and wonít be available for a while. Thank you for your patience while we prepare a new and improved arcade for you.

enjoy our new home.

support reimagined.
See more
See less

Waves of fatigue and aching legs/arms

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Waves of fatigue and aching legs/arms

    This is a new one for me. Was diagnosed in 2003 with RRMS and have had been on a variety of treatments, the latest being Plegridy (for a little over a year now). I am very familiar with fatigue and how it affects me and what may set it off at times, but lately I've had fatigue hit me in waves and this is totally new.

    I can wake up and have lots of energy and I get going and about 3 hours into the day I find that I have got to stop and I usually fall asleep for a few hours! Then I wake up and I'm good again for several hours and it comes back to hit me again. Has this ever happened to anyone else?

    I am on Modafinil but only on as-needed basis. When the fatigue days hit me I take one in the morning and then another around 1pm and it's geneally a good fix...but not lately. It seems that it's not even touching the fatigue I'm dealing with. I am not on Modafinil daily so there's not any issue with medication-saturation.

    Another weird thing: aching legs and sometimes arms. I've never had to deal with spasticity so I don't know if the aches are a part of that particular symptom. Heating pads help, topicals like Icy Hot help but it doesn't stop the aches. The aches also switch legs and will sometimes include my upper arms. And the frosting on the cake is the occasional intense 'sting' in a toe or on an ankle or the side of a hand. Is this spasticity?
    Wendy
    "There are signs everywhere...."
    "Life is wasted if it's not lived as an adventure."

    #2
    I'm interested in responses. I've been on Tysabri only for about 11 months and fatigue has been my enemy. So much so i am going for more testing to see if it's just the MS symptom or if something else is going on.
    I occasionally get the "stinging" and i always wondered why. I'll get it my lower leg, up my abdominal or sometimes in my arm. Not often but the times it has happened i've literally yelled ouch and it took my breath away. My MS symptoms were numbness and tingling in my whole right side minus my abdominal area. The stinging happens on either side of my body.
    I'd like to hear what others saw as i've only been diagnosed a year and still learning a ton about MS.
    Dx March 2018; possible first episode: August 2011
    Tysabri May 2018-June 2019, Mayzent July 2019

    Comment


      #3
      Hi Wendy

      Originally posted by TheBeans View Post
      I can wake up and have lots of energy and I get going and about 3 hours into the day I find that I have got to stop and I usually fall asleep for a few hours! Then I wake up and I'm good again for several hours and it comes back to hit me again. Has this ever happened to anyone else?
      I can relate to having the limited energy, and needing to rest after a time of activity.

      Fortunately, I haven't had the 'sleepy' type of fatigue for quite awhile (knocking on wood) - but I do experience motor fatigue (legs/arms/back muscles tire easily) on a regular basis.

      Originally posted by TheBeans View Post
      And the frosting on the cake is the occasional intense 'sting' in a toe or on an ankle or the side of a hand. Is this spasticity?
      I have experienced the intense 'stings' for a long time. The sting, when intense, is always followed by a muscle spasm (or jerking), of my leg, arm, hand, or foot (depending on where the sting happens.)

      When the sting is milder, I can still feel the impulse in my muscle, but the spasm or jerking is restrained.

      Impaired nerve signals are the root cause for most MS symptoms.

      Take Care
      PPMS for 22 years (dx 1998)
      ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

      Comment


        #4
        Hi Jennaly

        Originally posted by Jennaly16 View Post
        I'm interested in responses. I've been on Tysabri only for about 11 months and fatigue has been my enemy. So much so i am going for more testing to see if it's just the MS symptom or if something else is going on.
        There are different 'types' of MS related fatigue. My main issue is motor fatigue, causing my arms, legs, and back to tire after light activity.

        I hope this info will help your understanding of how different types of fatigue can affect those of us with MS.

        Fatigue is the most common symptom of MS. As many as 75% to 95% of all people
        with MS have fatigue; 50% to 60% say that itís one of their worst problems. In fact, fatigue is one of the major reasons for unemployment among people with MS.

        No one knows what really causes MS related fatigue, but we do know some
        things that can help. This guide explains some options.


        https://www.nationalmssociety.org/Na...hould-Know.pdf

        Take Care
        PPMS for 22 years (dx 1998)
        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

        Comment


          #5
          Where to find answers

          Unfortunately I do not have an answers for The beans and Jennaly.

          I do recommend that you continue to search for answers from your physicians and local MS support groups. Also you can check out:
          https://healthunlocked.com/mymsaa/about
          I hope that you find answers, or at least, find ways to cope.

          You are not alone in have symptoms that seem unusual and/or relentless. You belong to a group of people who care for you and will try & support you in anyway that we can.

          Please let us know how you fare and share your stories.


          PS. Is Cannibis legal in you state? It seems to help those of us with MS

          Comment


            #6
            Waves of fatigue

            Wendy I've been diagnosed almost 12 years now and I've been having similar fatigue as you described. On the weekends I'd wake up with energy and start doing chores but then I get what I call an 'energy drain' and I have to stop. After resting a little it comes back, sometimes it takes a few days to come back. Over the years I've learnt to pace myself for the most part although it doesn't always work. Sometimes it's a challenge to get through the work week and no matter how much rest I get it still doesn't feel enough. Mild exercise has helped with the fatigue but not with the cognitive issues associated with fatigue. When I exercise my muscles are sore....

            Comment

            Working...
            X