Thread: MG and fatigue
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Old 03-04-2012, 03:56 PM
Nightcrawler Nightcrawler is offline
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Join Date: Aug 2011
Posts: 26
10 yr Member
Nightcrawler Nightcrawler is offline
Junior Member
 
Join Date: Aug 2011
Posts: 26
10 yr Member
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When I was diagnosed with MG by a neurologist that really really believed I had it despite negative tests except for one jitter on SFEMG, my feeling was one of profound relief. I didn't have to wonder if I were lazy or crazy, everything made sense (as much as it can in MG). When I got better on the pyridostigmine and a whole lot better on the prednisone, I discovered a lot of things. One thing you mentioned was task avoidance. I was well aware that it was linked to depression and there is a strong family history (along with MG and other autoimmune illnesses). So I developed coping mechanisms that mostly I don't need anymore. I made a list of tasks I needed to do that I really didn't want to do and one list of easier to finish tasks. The tasks I didn't want to do, I broke down into pieces I could face, like gather the materials to do it, a piece of the task, the rest of the task. And I would try and do one on that list a day along with as many of the tasks on the other list as I could. It gave me a feeling of accomplishment and sometimes I could do the whole task on the hard list once I got started. I am stubborn or determined depending on how you chose to look at it.

After treatment, I discovered that all those tasks I wanted to do and was having trouble making myself do involved using the muscles most affected by MG. My task avoidance was really my body telling my mind that I was taking on something I might not be able to do or would pay the price. It turns out it had nothing to do with depression, although it was
depressing not to do. But the energy management skills I learned still come in handy when I have to use them. I tried to tell the doctors for many years that I was bothered by weakness, not fatigue, and that I was fine and then I wasn't and if I waited, I was fine again.
This was true especially early in the course. But frustration with the process of diagnosis and the attempt to do what was beyond my capabilitites at the time, and the worry about what was going on eventually did lead to fatigue, especially by the end of the day, not to mention that I was getting older.

I might just say that I got a taste of the preprednisone me last month when switched to a generic that I did not absorb. I finally realized the slide might have something to do with the switch in generics and after a couple of days back on the old one, life seemed easier once again. I used to admire people that just got out of bed every morning, when it took me such an effort to do so. I'll tell you their secret, it's easy if you are well. nc
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"Thanks for this!" says:
momma3love (03-07-2012)