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...

1,709 Members
7,414 Posts
0 Online
Muscles & Bones
/ Myasthenia Gravis Support Group

Back to denial

Elle114
Elle114
On Friday I had a dentist appointment went fine but felt like I wasn't holding my mouth as open as before but no real trouble but by that evening my jaw was so sore. That was 12 hours after my appointment. I couldn't understand why it would bother me so much later. Then yesterday I walked a large mall for hours and did pretty good but this morning my legs & feet were super sore & weak. That was after sleeping all night. After I got up & stretched & rubbed my muscle, I felt fine again.

My question is my understanding of MG is weakness and fatigue with repeated use but seems like I get more sore & weaker with rest?

I know I keep questioning this dx. Denial back maybe.
annkemp
annkemp
It is crazy.
Negative problems are usually a day after overuse.
One weekend I was so happy to be able to wash dishes I did them all day while we had a gathering.
The next day....I literally was numb....couldn't move my arm. Thought I lost it forever.
One week swimming helps. The next week it makes me sore.
Constant puzzle.
Lately I have soreness and weakness that I have never felt.
Always a new surprise , aren't we lucky...
Barbel
Barbel
When I feel good and overdo it one day, it might take me two full days of rest to get back to my "normal".

I agree with Ann if we over use our muscles we feel it the next day not the normal two days after for people who don't have MG. And yes, it is hard to figure out, but I still keep trying.

Today I went to church, rested, made potato salad, rested, folded laundry, rested, mixed brownies, rested. Next I wll do dishes and rest some more.
Cj416
Cj416
Elle , this is clearly one of the more frustrating aspects of mg and you can be dammed if you do , dammed if you don't ! Understanding our own limitations one day is good however it changes from time to time making it even more difficult to know your limitations day in and day out.

So my motto is keep doing what you can do , perhaps a little more and figure in the rest periods so you can keep accomplishing..easier said than done sometimes I know , but just don't give up and I know you won't .
deleted_user
deleted_user
I agree with the rest....Although I have more ocular problems than muscle problems, so far, I find if I lift the grocercys and bring in house next day can barely move my arms etc..Feel like I lifted weights or something..So does affect you quick usually...Still have one arm that I pulled a muscle and have had pain off and on with it for MONTHS...So yes how lucky can we get!! PS Yet usually walking my mile and a half, when I can, doesnt bother my legs.....Go figure!!! A puzzle is surely is!!!!
Bamboolilly
Bamboolilly
Hi, Elle, the dentist is particularly hard for me. You don't realize how many muscles you ate using. Try not to push it. It sounds like you did a lot. Sorry, but been there.
Wellness,
judithwilson
judithwilson
This is interesting and is something I was recently wondering about. I have been working really hard ( for an mger) in my yard. I'm having my daughters bridal shower here the end of July ( why did
I suggest that?) I do take rest periods thru out the day and have done really well. However, all week my muscles ache and are fatiqued. I started wondering if this is mg, being deconditioned or something new.

Just not sure.

Judith
Elle114
Elle114
Thanks everyone for your reply. I guess I just don't understand this disease yet. I had it in my head that you use the muscle more & more and it fatigues. I didn't think about it being hours & hours later when those muscles aren't even in use anymore. That seems to be happening a lot.

It seems when I stay in motion I do pretty good but when I sit down to rest, especially in the evenings....my muscles really start aching. It makes it so hard to know when I'm over doing it, when it doesn't hit me until hours later.

You all are the best, it helps so much to know that I'm not imagining this roller coaster of issues.
cgreens
cgreens
Make sure you do activities when you are at your strongest and time those activities with mestinon (1 hr after you take it, be more active).

You can hurt yourself if you try to use your muscles when they are not fully ready! That can cause pain/being sore instead of just wearing down.
arniebb2
arniebb2
I was just going to say what cgreens did. Anything physical I do between one and three hours after each mestinon dose. The other times I might pay bills, relax with eyes shut, computer, etc. I'm a year and half in Elle and still learning. I find this schedule also helps me not over-do.
Good luck,
Claire
Joe-Fodor
Joe-Fodor
Did you have Novocaine? This in not recommended for MGers, and I've never used it since my dx -- but I don't really know how to describe the effects from the novocaine on an MGer, nor have I read any accounts of MGers who have used novocaine. I don't want to be the guinea pig! ~joe