I thought I would start a new topic, since I don't like to overtake anyone else's posts. Try to keep this one "on topic" too, since I think this conversation would be helpful to everyone.

Susan (Desert Flower) defined the areas as three: Tired (lacking energy), Fatigued (weak due to overexertion) and Weak (lacking physical strength). In my opinion, and after researching, I honestly think there are only two categories: Tired (sleepy tired) and Muscle Weakness (due to overexertion or lack of physical muscle strength).

1. Sleepy tired Being tired is all about needing to sleep. Whatever got you there, you need to sleep. There are a lot of causes other than MG, such as a B12 deficiency, thyroid issues, sleep apnea, cortisol deficiency, jet lag (which IS a cortisol issue) and not getting enough sleep. Yawning can be a signal that you need sleep . . . or oxygen. Sleeping more may or may not help you get better and less sleepy. That's why defining what is making you want to sleep is so important. It's not always the MG that does it.

2. Muscle Weakness The more we do, the more our muscles get weak. Whether that is due to repetitive activity, overexertion as Susan described it, our acetylcholine not getting to our muscles or many other variables of MG weakness.

Doctors call muscle weakness "muscle fatigue." That does not mean our muscles are "sleepy." They are not getting enough acetylcholine and simply don't work well or at all. It's semantics but what it all means is muscle weakness. Fatigue is often used interchangeably as "fatigable" by doctors because MG is all about muscles that can get weaker the more you do. When a neurologist says, "Your muscles are fatigued" they mean your muscles are weak.

To confuse the issue even more, when our muscles are too weak, our mind can become "tired." In "normal" people, physical exhaustion "signals" our mind to put our bodies to sleep. We have these inborn mechanisms like that to help us. Like when you are dehydrated and your body sends out a signal to make you thirsty. So when enough of your muscles become weak due to a lack of acetylcholine, your body thinks you need to sleep, thereby making you sleepy tired.

Take cortisol, for example. If you burn the candle at both ends, whether you have MG or not, your body's cortisol may get maxed out. Then the body will try to put you to sleep by a reduction in cortisol. Sleep is essential to keep our bodies working well.

There are a good number of articles on MG and fatigue (tiredness or weakness) in PubMed. Here are a couple.

http://www.ncbi.nlm.nih.gov/pubmed/20656621
"Antibodies to the postsynaptic acetylcholine receptor at the myoneural junction cause diminution of the force of muscle contractions. This leads to a feeling of fatigue."

http://www.ncbi.nlm.nih.gov/pubmed/19813207

Muscle strength and fatigue in patients with generalized myasthenia gravis.
Symonette CJ, Watson BV, Koopman WJ, Nicolle MW, Doherty TJ.

School of Kinesiology, University of Western Ontario, London, Ontario, Canada.

Abstract

Since autoimmune diseases do tend to group together, any new symptoms like increased muscle weakness or increased need to sleep should be brought to your primary doctor's and/or neurologist's attention. Sometimes it's best to start with your primary doctor because they can do some basic testing to rule out anything new. For instance, if you are on immunosuppressants, it may be that you have anemia, B12 deficiency or other deficiencies or you could have cancer. Neurologists can't be bothered with any of that. Their specialty is neurology. Specialists only want to deal with their own little specialties.

Simply the act of drinking coffee every day can cause you to be tired when it runs out. So many things can make you want to sleep, like reading a post about weakness and sleepiness that is too long.

The important thing is to see those two things as signals to you to either slow the heck down, get more drugs or get more sleep. Or stay out of the heat or so many other things that tick MG off.

This is how I wish my mind and body felt on a daily basis, neither sleepy nor weak:

There are so many other variables in the body that fatigue us, such as tryptophan (like in turkeys) but I thought we better keep this brief and as it relates to MG. However, if it helps you to talk about other issues such as amino acids, go for it!

Any comments, thoughts or ideas would be great. And if a doctor uses words like "fatigue" or "tired" and does not define them well enough, you can help them clarify what they are trying to say.

Annie

Thanks, Annie!

Hope it's OK to repeat myself from the other thread, in case more people see it here.

When my arm, neck and leg muscles are weak, I feel a sensation of fatigue in them. They feel like I've just done something physically strenuous, even though I haven't. Even if I'm lying down, I have that feeling of fatigue in my muscles. It's not soreness, really, though if it were a more intense feeling I might call it that.

When my side/back muscles are weak, I don't feel any particular sensation in them; they just don't work properly. In fact, I'm still not sure which muscles exactly are making me tilty from the waist up.

I'm asking if anyone else (besides DesertFlower, who answered affirmatively in the other thread) has these two--subcategories?--of muscle weakness. And, of course, what does it all mean?

Thanks again. These sorts of discussion are really valuable. They can help us communicate more clearly with each other and with our doctors.

Abby

Question 1, what thread will I find the Desert Flowers original comments in? I feel like I'm starting in the middle of a conversation.

Question 2, I'm new to the MG thing so I have to ask when quoting the abstarct above what do they mean D-MG & ND-MG, I don't want to a$$ume it means diagnosed & non-diagnosed or is it really that simple?

Thanks,
Rachel

Here's a thought, Abby.

We have 640 skeletal muscles, all of which can be affected by MG. Every time a muscle becomes weak, think of a small weight being attached to them. When muscles are weak, they can feel "heavy." Sometimes it's only a particular muscle group we have used, such as our arms/hands after typing. What you are describing is many muscle groups becoming weak, which would make you feel like you can't move well or at all. They literally can feel heavy.

I think it's more like a spectrum of weakness than a different kind of weakness. If weakness were a color, like periwinkle, it would run the spectrum from vibrant to pale. It's the same color, only "weaker."

Rachel, Here is the link: http://neurotalk.psychcentral.com/thread133396-2.html

In that study, they are saying D-MG are those patients with a decrement on an RNS (repetitive nerve stimulation test) and ND-MG is "no decrement" MG. They are comparing patients without MG to those two groups too. Does that make sense? Bottom line of that study is that the degree of decrement relates to how weak someone with MG is but not to a level of fatigue (tiredness). DUH, as if we needed a study for that.

I posted an affirmative response to you Abby in the other thread but I guess you didn't see it?

My current crisis started with legs feeling wobbly and fatigued like i might fall when i went down the stairs. When my husband checked them with a straight leg raise from the couch, there was zero resistance. They felt like they had 40 lb weights attached and they were just totally gone. They were normal the day before but that day they were very achey like I had overused the muscles which was new for me.

In regards to when I have problems walking, my knees just give out and I start to fall, but I don't fall, with no warning and no sense there is any weakness or fatigue at all. The muscles just do not respond or catch.

My neuro was stunned by my weakness. He checked all the muscles in my fingers and hands with his 3 residents there watching how to do all this and I just had no strength/resistance. Again, I had no sense that there was a problem. The only way I knew was that I couldn't open a bottle with a pull tab that day but I had the day before.

I think what it means to me is I used my legs a whole lot because they were normal the day before and they were exhausted and weak but my hands only showed the weakness. Generally speaking, I supposed the weakness and the lack of response we feel is the absence of the acetylcholine making the connection.. .there is just nothing there, no connection happening. That is how it feels in my case.

debra

Thank you, Debra! I don't know how I missed this on the "prednisone taper" thread. This is exactly what I need to hear.

This is exactly the problem with my side/back muscles. They don't feel tight or anything--they just don't catch me. They don't tighten up to stop me from tilting. Walking on uneven ground, or in the dark, is especially hard because if I tilt a little, I just keep tilting in that direction. Sometimes when I'm standing, I tilt to one side, from the waist up. That looks funny.

Also, if my legs are affected, sometimes my knees hyperextend--I mean they bend too far backwards with every step. I guess there are muscles that keep them from doing that, normally, that aren't grabbing--or "catching" as you said.

Abby

Hum I thought my balance problem was due to my double vision and POOR depth perception. As for my lack of energy or tiredness I have been on Pred for 3 days now and feel better than I have felt in 3 months. However it has yet to help my vision.
Mike

Mike,

How wonderful that you're feeling better! Here's hoping that your vision improves very soon.

It took me months to figure out that my balance problems were caused by weak truncal muscles. The doctor kept thinking inner ear, until I learned to explain that I had no vertigo at all. Then they thought it was ataxia. I'm still not sure exactly which muscles are giving out on me.

I think that double vision and poor depth perception would make balance troubles due to weak truncal muscles a lot worse. If you misjudge precisely where your feet need to go, and your truncal muscles are strong, you can adjust very quickly by tightening a muscle in your side or lower back, etc. But if those muscles don't respond well, a tiny misjudgment can lead to a big stumble, because you can't easily compensate for the misjudgment. Does that make sense? It's why I can hardly walk at all in the dark.

Abby

Annie,

Thank you for the clarification & the link. I can totally relate to all the different descriptions of weakness and fatigue, no matter what we decide to call it. There are days when you can hardly lift a finger let alone an arm or leg.

Spent most of Saturday out and about, it was such a beautiful day, I felt so good I kept suggesting different places to go to. What a big mistake, by the time we got home I could hardly lift my legs to get into the car, getting up my front steps was like climbing a mountain!! I spent the remainder of the day on the couch trying to catch up with myself. Sunday was even worse, between the cooler temps and overworking myself Saturday I was totally useless. It's so difficult sometimes to realize when your muscles have had enough, your heart wants you to keep going but your mind says it's time to go home and rest!

I'm hoping once I'm started on meds some of this will resolve, time will tell. Only a few more weeks to wait!!

Thanks to all for so much insight into this crazy condition!
Rachel

Mike, Your DV goes away with one eye closed, right? I hope the Pred continues to make you feel better. Please think about adding calcium/vitamin D and flax or fish oil to your routine.

Debra, I was actually worried when you posted about how you are doing. Are you overdoing things, now that you are on a lot of meds? Meds only go so far, you still have to be sensible!

Abby, I think we all underestimate even what having one weak muscle can do to get us off balance. All it takes is one muscle to be weak to throw our eye focus off and create double vision. I have a bad ankle and when it gets weaker, I trip on air from "foot drop." It's easy to "pooh-pooh" our own muscle weakness, and ignore it, because we want to much to be normal. Then we are so surprised when we can't stand or walk or whatever.

Rachel, MG muscle weakness is not predictable, even on meds. I often get "2nd day payback," where my muscles are even weaker than right after going out. The most important thing is to pay attention to all those clues, like the ones Abby and Debra spoke about.

The "sub-topic" of muscle cramping or spasming is important too. Yes, when MG antibodies attack our neuromuscular junction and we don't get enough acetylcholine, our muscles get weak. So many neuros, including my current one, refuse to acknowledge that cramping and spasming are a result of that weakness. They insist it has to be an electrolyte problem or something else. You can overuse your muscles more quickly than most and the end result is the same: Weaker muscles that can cramp up. I don't know why they are so obstinate about this.

After my crisis in 2005, I had an appt. to go see my internist. I was holding a mirror in my left hand while putting some makeup on. It contorted up so badly I thought I might be having a stroke. It was my first crisis and so I had no idea how bad every single muscle can get after that. Even the smallest use can send them into cramping and spasming.

Can you tell I'm in a bad mood?

Thanks for the input, you guys.

Annie