Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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unsure81 04/25/2013

Sorry to keep asking questions but I have another one! I can relate all of my symptoms to MG (fluctuating one sided facial and eyelid droop, weakness and tired/dead/ache of the neck, thighs and occasionally upper arms....and a pressure in the centre of my chest which feels like I can't quite breathe properly if I've overdone things) but the one thing that confuses me is that I feel easily fatigued. I know I am experiencing multiple muscle weakness/fatigue which may explain the general fatigue feeling but from the research I have done fatigue doesn't seem to be linked to MG? 9yrs ago I was told I had Chronic Fatigue and psychological factors as a diagnosis for my symptoms but I don't feel that explains how my muscle weakness improves with rest (I could feel almost normal if I did nothing all day) and then worsens with activity? The worse my muscle weaknesses are, the worse the fatigue. Some days (or at some times of the day) the only noticeable muscle weakness is a slight drop on my top lip and my energy levels are pretty good but then within a few hours or on another day I can have a complete one sided drop on my face and be doing the "duck limp walk" and feel like every movement is a huge effort as the fatigue hits?

Does anyone else experience this?

Thanks again for all of your help and advice.x

Kimber71 04/25/2013

Fatigue and muscle symptoms are 2 of the biggest symptoms of MG. I don't call it fatigue I call it extreme exhaustion. It can show up for me in as little as 2 hours. Some people do better with the fatigue.

Some of us feel that if you catch it early on and start to rest right away then you are less likely to have prolonged (for days) or extreme (feel like you can't do anything at all). If you push through too much some of us feel the affects for days or weeks. There are also occasions where it seems like no matter what you do you are going to have one of those fatigue days.

For me, the fatigue was/is a major part of my MG. It was the first symptom to show up. I tried diets, exercise, vitamins, minerals and had a surgery to stop monthly blood loss. You name it I tried it. Doctor after doctor said eat right and exercise or you're anemic. At one point not knowing what I had (and therefore had no excuse for not doing things) and knowing I had to shower, dress and leave the house would put me into tears and I had to give myself the "suck it up" "you can do it" pep talk.

TristynB 04/25/2013

Awwww, sweetie! Fatigue is a HUGE part of MG... Monumental, even!

Pre-meds, I was wiped out with just a short walk up the street. I was huffing and puffing, and even now when I'm on a "down swing" I sometimes find myself breathing a little harder. Listen to your body though! If your energy is low, just chill out as much as you can.

My inner Princess likes to watch movies in an air conditioned room or sleep all day :-)

cgreens 04/25/2013

Until one gets stable, it can be quite a roller coaster ride. Hang in there! Come here as often as you'd like and vent, question, share...whatever. That is what DS is for.

Here is to better days ahead.

TJ

vieve 04/25/2013

I have heard people say, and read on the internet, that fatigue isn't a symptom of MG, but I know it is, and it seems many people on here agree with me. But yes! I have this extreme fatigue/exhaustion, that is separate from muscle exhaustion. Then follows the mental fog where I get really confused and can't think clearly or make decisions, just like I used to feel when I stayed up all night. When i first got sick I suddenly was taking naps every day, when I used to hate napping. Unlike you, my fatigue is often correlated to the severity of muscle weakness, but sometimes I also have more fatigue/exhaustion on days when the muscle weakness is not worse than normal, not sure why.

I think this fatigue is worse when I eat sugar and improves if I eat a lot of vegetables, but eating well doesn't make it go away completely.

Cabbage7 04/25/2013

Everyone has already given you the information you need. Fatigue is definitely a MG symptom. Rest is one word you will see a lot of. I hope your energy return. God bless you! Cabbage7

Bamboolilly 04/25/2013

110% yes! I finally am getting over the fatigue part after 9 months. along with that came the spaciness. that is almost gone too. not exactly jumping up and down yet, because other weaknesses are still there... but just so you know. Yes, fatigue and muscle are two of the biggies.
be well,

deleted_user 04/27/2013

Yes, fatigue is part of MG. My major symptoms are fatigue and shortness of breath. I due have muscle weakness but that is not a major problem at this time.
Mary

Kimber71 04/28/2013

Try attempting to rest immediately when you start to feel signs of fatigue and try not to over do it. For me the most effective rest is lying completely still. No TV, reading or other distraction. Forms of meditation may help because some people (me) would like to "hurry up and rest" so we can get back to life. That causes our mind to race and our minds and bodies stress and we cannot rest properly.

Find a method of your own and try it. Then let us know if you see a change.

angela82 04/28/2013

I am so glad I read this discussion thread. I too have extreme fatigue and my boyfriend seems to think that it's just depression. But I don't feel depressed. I'm just so tired all of the time. I could seriously sleep all day long if I could. So thanks for sharing your fatigue stories! I don't feel so alone now. :-)

DebbieF777 04/28/2013

Yes, fatigue is the worst for me day to day! I will give anything to have just that symptom minimized!!

deleted_user 04/28/2013

I was diagnosed with RA before MG so unfortunately I am all too familiar with nasty autoimmune fatigue- feeling like you're slogging through the mud just to get to the fridge to make lunch or take a shower. what I noticed is that with MG my gait is now wide and unstable with a nasty limp- much different than just plain-old fatigue. We know the difference between fatigue and weakness even though the docs seem to think we don't!!

HopethroughFaith 03/27/2014

I went back to the Myasthenia Gravis Foundation website recently and read this:

"Patients with myasthenia gravis come to the physician complaining of specific muscle weakness and not of generalized fatigue."

My primary symptom is extreme fatigue, so I searched the topic on this site and see that I am not alone. I understand that everyone presents differently, but how can these "official" sites be so misinformed?

Joe-Fodor 03/28/2014

I think the general problem here is that everyone gets fatigued -- and feeling tired is quite possibly the most common thing reported to doctors. When I described my symptoms to a relative once, she snapped "that's just what I call being tired."

But our fatigue is a different type -- before I got MG, I used to love the feeling after a hard workout or an hour in the sauna, the sort of loosey-goosey, relaxed state. But now I feel like that after hanging up clothes, or cleaning out the bathtub! It's not just late night, hard to stay awake, tiredness.

~joe

annkemp 03/28/2014

welcome to the party.
Isn't it fun.
I woke up this morning thinking...I just feel like I am carrying a 50 lb backpack all the time.
Tired of it...but it could be worse. I used to always think...wow...saying that sounds so negative....that is because it does and is.
have a great day and we can keep smiling.
Ann

deleted_user 03/28/2014

Today is one of those fatigue days. I really don't want to move my fingers to type this. I took extra B12 and set my alarms so I wouldn't miss a dose of my Mestinon. Thank goodness it's Friday afternoon and I'll have all weekend to get better. Shallow breathing and just no energy at all. Sorry you joined our club. I really pray for no new members. Rest is the best treatment it seems. Have a great weekend.

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