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  • Abnormal Fatigue Impacting Your Quality of Life?

    Posted by jodi-enders on June 9, 2021 at 6:00 am

    Do you experience constant fatigue? Has your MG medical team acknowledged this as a probable effect of the disease?

    Marisa Wexler MS published a news article presenting research that suggests fatigue to be highly prevalent even among mild MG patients.

    Those with both pure ocular MG and generalized MG, even those in remission, commonly endure extreme fatigue. Fatigue also can occur in those who have well-performing muscles.

    Wexler also included that MG patients who felt more severe fatigue also experienced significant depression and daytime drowsiness.

    Do you experience unusual fatigue? If so, how does it impact your quality of life?

    jodi-enders replied 2 years, 2 months ago 3 Members · 4 Replies
  • 4 Replies
  • elsa-safir

    Member
    June 27, 2021 at 3:17 pm

    To respond to that 2nd question of whether my medical team acknowlege fatigue as a “symptom” of MG, the answer is no. My neurologist for the past 20 years insisted that fatigue is not really a symptom especially if other symptoms of double vision, droopy eyelids, speech and swallowing are not present. I left many appointments upset that he would minimize fatigue as I consider that one of the most prevalent symptoms for the MG patient. Having dealt with MG fatigue for over 30 years, I do know that rest/sleep improves fatigue and I have learned to pace myself. Any social event or activity requires careful consideration and thinking through how fatigue can be managed. It is wonderful to have friends who understand chronic illness fatigue because you can visit, nap to recover, and continue to visit. Never expect a person with high energy to understand this. Treasure the friends who do.

    • bns-staff

      Member
      June 28, 2021 at 5:19 pm

      I totally feel you on having to plan every social event or activity. When I was first diagnosed with MG, I was so upset that I had to think so hard about how tired I could become during what used to be a “normal” activity. Now it feels like second nature-I worry when I don’t plan out the outing!

      And yes to understanding friends! The ones who understand are some of the best.

    • jodi-enders

      Moderator
      July 5, 2021 at 3:54 am

      Elsa, I am so sorry for decades you have experienced denial of fatigue as an MG symptom by medical professionals. Thankfully you have been able to identify your triggers and teach yourself how to adjust. Accommodating to MG can be incredibly challenging, even when we feel we got it all together. That is why our community here will always be here to support you. I have found that my go, go friends that never stop require more patience to teach them. They may not understand as thoroughly as friends more similar to us. Still, suppose they entirely support our journeys and accommodations. In that case, I think friendship diversity can never hurt if the friendship has no adverse effect on us and our energy!

  • bill-wheeler

    Member
    July 3, 2021 at 6:44 pm

    Hi All! I was a high activity man, age 72, when diagnosed July 2020…just a year ago. Hiking, swimming, water skiing, boating, maintaining a couple of homes and a lot of acreage. Got up July 4th after a week of extreme heat and working on redoing a long driveway for 5-6 hours a day, digging and shoveling and hauling dirt and gravel, and was seeing blurred double vision. Also, when brushing my teeth, could not form my lips to spit.

    That was the beginning, saw Neuro 10 days later, MRIs to check for other causes were negative, started on pyridostigmine and saw some improvement in 24 hours. Referred to MG Specialist at URMed in Rochester, NY but had to wait until 8/14 for appointment. Pretty much could do very little because vision was still very impaired. New Neuro MG Dr. started me on Prednisone 10mg plus continued¬† pyri and said I would see a difference in 5 days or so…and it was like a miracle! Symptoms disappeared for the most part, but still got tired early evening and long term sustained heavy activity also tired me quicker than before. Sometimes in evening, harder to read and I notice my speech deteriorating some. All acceptable compared to what a lot of people go through.

     

    Tried to reduce my pyri [60mg 4 x day] to 3 x day and was under stress from moving into a new house, 2 deaths in our immediate family, selling our other properties and multiple sales of Real Estate homes closing in a 30 day period [I am a residential Realtor]. Relapse and more eye, mouth and fatigue symptoms. Went back to pyri x 4 and increased prednisone to 15mg and then 20 mg…which is where I am now. Symptoms improved but not back to where I was a month ago. Can`t complain! Could be much worse so very thankful that I am doing as well as I am. My wife is 10 years younger but has Shogrens Disease and Chronic Fatigue so I worry most about my taking care of her when she has issues and down the road a bit. All of these things prompted our move to a one level home with less acreage to take care of!

     

    I hope to meet you all and hear some of your stories and advice based on your experiences.

     

    Bill

    • jodi-enders

      Moderator
      July 5, 2021 at 3:47 am

      Hello, Bill! I, too, was an extremely active individual pre-diagnosis. And the grief of what I lost was undoubtedly challenging to swallow for a while. And, of course, I still occasionally grieve. Brushing my teeth and the double vision was also my first symptoms. That is great you were able to be prescribed pyridostigmine reasonably quickly after your initial flare. How frustrating is it when they can’t schedule you soon during a flare, but MG can turn fatal if a flare is not treated promptly?

      It astonishes me how much stress can impact our health physically. Your optimism through these hardships is fantastic. Never lose your spark. I would advise you to take things one day at a time and accommodate as much as possible, but I see you are already doing that! Congratulations on the home and making a step towards easier management of your illnesses. I hope you can stay positive amidst all of life’s unexpected and unavoidable changes.

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