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  • Managing What Doesn’t Get Accomplished During a Flare

    Posted by Jodi Enders on February 15, 2022 at 2:39 am

    Hi everyone! If you are new and I have yet to get around to personally welcoming you, expect me to reach out this week!

    I am experiencing my first flare in the last year, and this first has come out of nowhere when otherwise I have few limitations on the day-to-day that stand out to me. Thankfully, the neck weakness subsided, allowing me to stand and move without much pain. The fatigue is brutal in sending me more and more stress that I am not getting what I need to do. I barely have found any energy to make food.

    How do you recover from unexpected flares? Maybe not physically recover, but how do you find that motivation to face what you unavoidably had to push off? What do you do with those things on your to-do list that didn’t get done, especially if you never have the energy to cram everything in one day to catch up?

    Alan Bridle replied 2 years, 2 months ago 2 Members · 2 Replies
  • 2 Replies
  • James Enos

    February 17, 2022 at 6:44 am

    I’m new to this too (6 months) and am in a flare myself.  I was extremely active prior to MG in my life and could set many goals for a day and actually get a lot accomplished. Not right now.  I now set “mini-goals” and hope for the best.  The exhaustion by mid-day frequently forces me to nap.  The hardest part for me is getting enough sleep at night.  I wake after four hours and have to sleep in split time intervals.  I make it to about 1:30 a.m. then sleep again from about 4 a.m. until 7. Nothing my doctor and I have tried helps me sleep.  Patience is not something I possessed prior to MG. I’ve now had to learn it and practice it where getting things done is concerned.  I’ve had two IVIG so far, but nothing has really helped the exhaustion, the weakness and the trembling constantly inside my arms and legs.  Learning every day and hoping the MG specialist I am soon to see will be more aggressive than the general Neuro I see now.

    • Alan Bridle

      February 19, 2022 at 6:48 pm

      Insomnia was one of my biggest problems when I was first diagnosed (last November), too.  I rarely got more than two hours’ sleep after diagnosis and went rapidly downhill from sleep loss as well as from more direct muscular effects of my MG.  My primary care physician suggested that I take 100mg  trazodone before bedtime but that did nothing perceptible to me.   I went into full blown myasthenia crisis and ended up in an ICU on a ventilator for about two weeks, during which the ICU doctors added 25 mg seroquil to my night dose.   That combination gave me my first good nights of sleep in weeks and I have continued the trazodone+seroquil regime since coming home.

      I now sleep through every night for six to eight hours.

      Everyone is different – but in my case I know that not worrying about not sleeping has also helped me to sleep better, so there is positive feedback.  My primary care physician says to continue taking both meds (trazodone and seroquil) at bedtime even though I am generally feeling much better now as they are not addictive and their benefits to me outweigh any risks.

      I had also tried taking melatonin but was advised to stop by another doctor who said it does not work well with MG and increases nocturia which of course interrupts sleep.   My life has changed so much for the better by returning to sleeping well that I hope what worked this charm for me can also help someone else.

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