When I first started having symptoms of MG, I would have made a distinction between muscle fatigue and over-all fatigue. I would have said that MG makes my muscles tired, as if I'd just been on a hike or something, but that it doesn't cause the kind of fatigue you get from having a fever or staying up way too late.

Now I'm not so sure. I'm not even sure there's distinction of kind, and not just degree, between those two kinds of fatigue.

I do a lot of mental work (part-time from home). Right now, for example, I'm heavily editing a long, difficult manuscript. There is a certain level of MG-related weakness and muscle fatigue that I can have without being "too tired" to work at the computer. On the other hand, when this muscle weakness reaches a certain point, then my mind is tired, too.

I found this article, which addresses the question, sort of. http://findarticles.com/p/articles/m...g=content;col1
I don't really think it's that helpful, except that it's nice to see a study that takes all of this seriously. It's nice to see someone doing a myasthenia study by asking MG patients about their experiences.

Since I got MG, I've dropped two hobbies that I really used to enjoy (playing Irish music and learning American Sign Language). I'm really sorry to see them go, especially because they were both things my husband and I did together. I know that losing interest in activities that you used to enjoy is a symptom of depression. In my case, though, I don't think it's that. I think it's because of a general MG background fatigue--I mean that it's always there but doesn't really jump out at you like periods of more severe weakness that cause noticeable myasthenia symptoms.

The article talks about "task aversion," which is a phrase every human being should understand: it's that "I just don't feel like it" feeling. Since this is a normal human experience, it may not be so noticeable when MG increases it. But I think that's exactly what is going on with me.

I'm still trying to understand this disease (and it would help if the durn thing would stay still and stop changing all the time!). Only recently, when my short episodes of severe weakness have gotten, well, more severe, have I even noticed that there are two quite distinct groups of symptoms that I have: the general pervasive weakness that ebbs and flows; and half-hour episodes of more extreme weakness.

Abby

I loved that! It's so true.

Your post was just at the right time for me. Over the last few weeks I have been feeling much more tired, even though my MG has not been worse, and possibly even a bit better.

I tried discussing it with my neurologist, and he thought it may be unrelated to MG (which overall made sense).
At some point I just decided that if I am tired, even with no good explanation, I am going to just rest more, even if my MG doesn't seem to be that bad to require it.
I also decided that nothing is going to happen if I postpone some tasks, even if I am not crashing.

I thought that even patients with MG are entitled to be tired, just like other people, and you don't have to be hardly able to move to justify going to rest in bed. After a few days of taking this approach I gradually felt much better.

I realized that being forced to rest so many times because of MG, I forgot what it feels like to just be plain tired. Looking back I had many reasons to be plain tired.

Also, when most of what you can do is mental work, you do get mentally tired at some point. (I wonder if this ever happens to Steven Hawking).

It's nice to know that I am not alone in this.

P.S. I am too tired to read that article, but it does seem interesting .

My wife always tells me to be careful using these words to explain what I feel to my neuro for example if I'm tired, ache, in pain, exhausted, hurt ect. She says each of these terms mean something different to a neuro. She is likely right because when I use one of these terms he looks at me with a quized look. I guess I will give these words some more thought.
Mike

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

Thanks, Nightcrawler! You explained the thing about "task avoidance" really well. It's very easy for me to understand that the reason I don't want to go on a car ride is that it's hard to hold my head up that long. That's one specific muscle whose weakness is highlighted. But it's a lot harder for me to understand that the reason I don't want to go cook dinner is that doing it will involve pushing lots of other muscles that are also weak, but whose weakness isn't so apparent.

Mike, your wife is really smart. When I go to the neurologist, I try to explain how I feel by way of specific examples. So instead of saying "I get tired at night," I say, "Sometimes at night it's very difficult to get up the stairs. I can crawl up if my arms are strong, but if both my arms and legs are weak, I need my husband to lift me stair by stair."

I do this because once a well-meaning friend said to me, "How are you doing? Do you still get tired at the end of the day?" Maybe she just misphrased that, but I imagined she was thinking, "if being tired at the end of the day means you're sick, then we're all sick!"

Abby

Abby,

I've recently been thinking about fatigue versus feeling tired. The reason why is that I am feeling so much better. I still have MG symptoms, but they are mild (truly mild, not the "mild" my neuro has been telling me I'm experiencing all along).

For the first time since I got MG, three years now, I've experienced tired muscles rather than fatigued ones, and I've suddenly gotten interested in doing things I thought I'd never do again.

I went for three walks out in the desert and took photographs of the spring flowers! And I was able to walk far enough to actually experience tired muscles.

For the first time I can really feel the difference between feeling tired and feeling fatigued. Fatigued muscles refuse to work, as does a fatiqued mind, no matter how much effort you put into them...and the harder you try the more they refuse to work. Tired muscles, on the other hand, will work even if you feel tired, even if you don't feel like using them, you can count on being able to still function.

I've had major task avoidance for three years, but I'm not sure I want to call it that. I've worked hard my whole life and don't ever remember avoiding anything, it isn't in my personality. I have "avoided" things since I got MG because I physically and mentally was not able to do them. And if I was able to drag myself to do a thing, I crashed later on and learned to rest when I feel fatigued.

I am feeling better right now and am very aware of all the things I have been unable to do. I'm going to do a few of them while I am feeling better.

I wish there were better words to describe MG fatigue, I like the exhaustion term in the article...MG is being exhausted before you even do anything.

After reading the article, I see that the experience of fatique is good, it encourages us to get needed rest.

I enjoyed the article.

What makes me tired:

Having to live with an illness that has dramatically changed my life and requires elaborate planning to achieve what is considered in the normal world as simple every-day tasks.

Knowing that most people around me do not understand this " crazy" illness (and I can't blame them for that). Hearing that they think I am "fine" but just use a wheelchair and have a companion because it is more convenient.
And also have a lot of time to do "fun stuff" others are too busy to do.

Knowing that this lack of understanding of my illness, can endanger my life (as happened many times before).

Knowing that even when I am hardly able to move talk or breath, my life still depends on my own clinical skills and my ability to make the people with me understand that although I appear very peaceful and calm, I need respiratory support now!.

Having my accomplishments and ability (with enormous efforts) to continue leading a productive life, being held against me. As, obviously, if I can see a few patients, without compromising my standard of care; can get funding for my research; can write papers that are published in good journals- I can do much more if I only tried harder.

But, with all that, there are also those that do understand me (even if not fully understand my obscure illness), those that support me and have respect for my efforts, those that do their best to help, those that do what I physically can't, so that I can do what I mentally can.

And funny enough, it is mostly the same people. (and even me sometimes that am asking myself, can't I really do more?)

Guess, this is what it means to live with this illness. At least until there will be some better understanding and awareness in the medical community and the society we live in.

Alice,
Your comments reminded me of what a speaker said talking about attention deficit: that the worst thing kids with ADD could do was to get it all together for something that was really important to them, then everyone would say, "See what you can do if you try." So many have so little conception of how many steps literally and figuratively have to be overcome to reach success with ADD or MG. People do their homework or get dressed in one step: someone with ADD has to hear and write down the correct assignment, get the right books, get them on the bus, get them off the bus, remember to actually do the assignment, put it with the books to go back to school, get them on the bus, get them off the bus, get it to the desk and hand it in, every single step fraught with peril and do it day after day. Everyone here knows how many steps you must overcome to get dressed in the morning when MG is acting up, well described by the person who wrote about the spoon theory. The point being, sometimes we have to be content or even pleased with success that is not recognized, while we keep trying to get it all together. It is gratifying if we have someone else who recognizes our triumphs, but if we can't count on ourselves, we can't really expect it of others. :-) nc

It doesn't matter if you are appreciated by others and/or by yourself.

It's still tiring to have to work much harder for everything, while at the same time having to be cautious that you don't push yourself over the edge.

and it's OK to be really tired from time to time.