Hello all....I have had MG since 2007...I take Cellcept and am doing fairly well.
The one thing I have noticed is that I have become more fatigued. Im not taking about muscle fatigue but rather a general fatigue in that by about 5pm I
am just about out of gas. Neurologists will tell you that General Fatigue is not a symptom of MG but have spoken to other MG patients who have
stated they too share the same general fatigue.
Do any of you also have this general fatigue that really saps you are the day
goes on??? Id love to hear from you. Thanks so much!

sorry for the typos in my post....am on a new laptop and the keyboard has a totally different feel....i mean do you feel more sapped and out of gas AS the day goes on.......and i mean heavy duty fatigue..

If your mg is affecting your trunk muscles as well as specific muscles in other areas (eyes, facial, hands, etc) my experience is that you will have more overall fatigue as the day goes by. You don't realize how wearing it is to just hold your body upright and how tiring it can be. Go by how your body reacts to mg, not what the docs tell you. As we all know, we all react differently.

Thanks, that makes sense, and fits with my experience. Specific muscles fatigue and improve according to the point in the Mestinon cycle, but irrespective of that the overall fatigue increases as the day goes on, and thinking about it gets worse when I have to go shopping etc.

So at the end of the day, I am considerably more fatigued than at the beginning, even if I have just taken my Mestinon.

I find this unbelievable: many doctors all over the world do not accept general -sometimes extreme- fatigue, like sleep, tired, sometimes cognitive fatigue as a symptom of MG. Some patients I spoke got send to psychiatrist or been called lazy, or their doc just ignores it alltogether.

They know fatigue is sometimes a very debilitating symptom of MS, why not MG?

I mean, just think, logically.
We are sick. Something is going on in the body which shouldn't happen. It isn't normal. All this retarded antibodies fighting and doing stuff.
Taking mestinon does not copy the exact normal, natural way our muscles contract! This must cost extra energy right?

We have muscle weakness, which causes us to sometimes move, talk, sit, lay, eat, .... differently, which again: isn't normal, costs extra energy.

And not directly the MG, but other mg related influences:
Most of us take many different, heavy drugs. Like prednisone, ivig, imuran, cellcept, etc. All of them have different kinds of fatigability as a side effect.
And processing those drugs, fighting other side effects and more.
Some drugs can have an effect on your cognitive status, like memory and overall thinking. So, this also goes different than before, which costs more energy.

Pain, very known cause for extra fatigue. Pain, due to MG because lesser affected muscles get overworked, or the strain in the weak-but-not-paralized muscles.
Or pain due to -again- side effects (stomach, joints, headaches, to name some).

Besides, like other chronic illnesses, it can cause socialpsychological stress which costs extra energy.

I can go on, and on. All of this I have no scientific proof for (maybe there is, but I'm too tired to look ), it's my logical thinking.

I find it completely incomprehensible they do not see it as a normal thing for MG. Especially since almost everyone I talked to with MG, experiences the same (except for those on high dose prednisone who never sleep).
It makes many patient doubt themselves or feel misunderstood.

End Rant

I am the same way. I am pretty much done around 4 or 5pm. I have much more energy when I wake up, and get worse as the day progresses, even with mestinon. I have other autoimmune disorders too, though. I really think my fatigue is due to muscle weakness/muscle fatigue also. I think if they're saying your fatigue is not from mg, then they should be checking for other causes. Idk why they don't believe it's from mg. I have this conversation with my neuromuscular dr and I don't get a satisfactory answer. My husband can tell when I am tired because my voice gets weak and posture becomes slouchy. this seems like muscle fatigue to me ?

MGSnuggler,

Acetylcholine is necessary for many bodily functions, including sleep.

http://thebrain.mcgill.ca/flash/d/d_...11_cl_cyc.html

https://books.google.com/books?id=kW...ulness&f=false

When you have too much acetylcholine, you can become depressed. Too little, and you can become weak and sleepy, particularly for MGers.

This is biochemistry 101. I guess a lot of doctors had low acetylcholine during that course.

Yes, JJ, there IS scientific proof!

If you hang out at home, resting between doing things, you might not get sleepy or need a nap.

If you run a few errands, your body uses up acetylcholine faster. When I do that, my body puts me to sleep after I get home. There's no fighting it! I'm out like a light.

We have a reduced area where acetylcholine can get into the muscle receptors due to the antibody attack. So it's not only how much we "use up," but how quickly our body can adjust to that need.

Think of it as a "supply and demand" situation.

And other factors that can make it worse are heat/cold, stress, lack of sleep, infection, etc.

I realize that doctors like things simple, but this is not a simplistic disease! Many factors come into play, such as how many cholinesterase inhibitors you consume every day (besides Mestinon, such as caffeine).

HOWEVER, ruling out other causes for fatigue is crucial. Many of us have had B12 deficiencies. On Cellcept, you might have iron deficiency anemia. A under active thyroid can cause similar issues.

So see your primary doctor for a once over to make sure nothing else is going on! And don't feel guilty about napping! Don't doctors know that it's one of the first signs of MG?!!!

Annie

Exactly my experiences. Thanks Annie.

I have been struggling with this recently.. it feels debilitating in itself at times! However, I do have a rheumatological component to my mess too.. .. As Annie said.. when I can rest in between, I fair much better with fatigue and weakness!

This is also true for me.

I look at my energy level like a bank account. People, all people, wake up with a certain amount of energy to get them through the day. I wake up with much less than a person without a Myasthenic disease. It also costs energy to function during the day and it costs me much more than a healthy person. Something as simple as showering costs me a lot MORE than a regular person. I have to make sure I don't drain my "energy bank" too quickly or don't save/allocate enough to be able to get myself into bed at night.

It's a balancing act and sometimes no matter how hard I try, I mess up and drain my "energy bank" before I should causing me to be "down" too early in the day.