[BARBARA356]

I went to my grandson's special Olympics event yesterday. We ended up walking around a huge field and track but having to wait in the sun for long periods. I was fine yesterday. Today is a different story. I am weak all over. I feel a little strain in my calf muscles and arm muscles. I feel like I am going to fall down but I don't just weak. Is this unusual to feel the next day instead of the day it happened? I am going to my first MD clinic Monday anybody else go to one of those? I heard they do test the first day even if you already have a diagnosis. I am almost 50, and I was wondering does this actually damage the muscle recepticle to the point that it can't connect properly?
Is anyone else out there overweight and have MG/ I hope I gave you enough questions to answer. LOL.

[erinhermes]

Yes!Yes!Yes! We wax and wane so much! If you do tpp much, you will usually feel it BIG time the next day! I am like that all the time! I think almost everyone on this site sill attest to that.............superwoman one day- blah the next!

The one thing we cannot predict is HOW we are going to feel the next day - I will have my clothes ready for work, only to not be able to get off the sofa.......

Are you on meds yet? I know that since I have been on the pred it has caused weight gain - it just does that. I am bigger now than I have ever been and it is taking it's toll on m body - I have a small frame and it hurts like heck to move now (some days)..........

I think EVERYONE that takes pred gains weight - there isn;t much we can do about it.........

IT does get better though! The act that you were able to attend your grandson's game is GREAT!

Hang in there!
ERin

Originally Posted by BARBARA356

I went to my grandson's special Olympics event yesterday. We ended up walking around a huge field and track but having to wait in the sun for long periods. I was fine yesterday. Today is a different story. I am weak all over. I feel a little strain in my calf muscles and arm muscles. I feel like I am going to fall down but I don't just weak. Is this unusual to feel the next day instead of the day it happened? I am going to my first MD clinic Monday anybody else go to one of those? I heard they do test the first day even if you already have a diagnosis. I am almost 50, and I was wondering does this actually damage the muscle recepticle to the point that it can't connect properly?
Is anyone else out there overweight and have MG/ I hope I gave you enough questions to answer. LOL.

[Friend2U]

Just letting you know I read your post and you are in my thoughts and prayers. Though I don't have answers for you, I can identify with feeling so weak and how hard that is to deal with. For lack of anything better to say, "Hang in there".

[redtail]

Ho barbara,

I now know if i have a stressful day ie, walking lots sitting in the sun(which I've learnt not to do) even something like a funeral, with no walking just stress, will set me off and the next day I will be totally wiped. I know organise it that if I know Im going to have a busy/stressful day the next day will be a restful day.

Yep I'm overweight, from being on pred, its been so hard going from a good weight to being able to excercise to overweight and not being able to do as much excercise as I need.

take care
Kate

[ras1256]

Barbara,
Consider this a lesson in management. It's wonderful to be able to attend important events, but you will have to learn to manage it better to reduce the after affects - and yes, this happens same day, next day, two days later. I look at it as cummulative affects - you had just enough muscle juice (as Annie calls it) to get through this. The excitement of the even also probably got some adrenalin going and that helps get through. But the next day, the adrenalin is gone and one little thing (walking to the kitchen from the bedroom?) is enough to use up the rest of the juice and there you are!

For special events like this, try to get parked as close as possible (can you get a handicap tag for vehicles you ride in?), don't walk around any more than you absolutely have to to see those things your grandson is in and find a place to sit every chance you get, make sure you stay in the shade as much as possible, or wear a floppy hat to shade your head ( I prefer straw cuz it ventilates my head) and if possible get yourself a "cooling vest". These can be purchased online for all kinds of different prices, and have little ice packs that slip into them to keep your core temperature down. I have just put ice water on my neck and chest (and even doused my head in cool water) in the past to keep cool. May not look nice, but whatever it takes! And as Kate said, when you have the opportunity to plan ahead, plan on a restful day before (store up more juice), and after (replenish the juice).

I have found I need this strategy for visits from out of town guests, family gatherings, etc, although I have been know to disappear for a nap during gatherings. The day after ALWAYS gets me, just not as badly when take the precautions.

Hope you feel better soon! It's the pits having to pay for what should be a joyous outing! I'm sorry it affected you.

P.S. I'm not overweight, but am heavier than I ever was before. I have (normally) a very high metabolism so I was always a little on the underweight side to start with.

[erinhermes]

What great advice! It is so true! After every family thing, I find myself being really, really tired!

My grandparents (and most of my family) still do not get that fact......they told me they needed "younger" friends after my 5 hr drive - which I drove - to their house - and then to the outlet mall, etc.......

But now I figure to heck with it and just go to my room or a quiet place and just RELAX! If anyone has a problem with it, they can eihter go home or I will go home - I'm not going to jeapordize my health to keep other people happy anymore - that's how I ended up in the ICU!!!!!!

Hope you are having a great day!
Erin

Originally Posted by ras1256

Barbara,
Consider this a lesson in management. It's wonderful to be able to attend important events, but you will have to learn to manage it better to reduce the after affects - and yes, this happens same day, next day, two days later. I look at it as cummulative affects - you had just enough muscle juice (as Annie calls it) to get through this. The excitement of the even also probably got some adrenalin going and that helps get through. But the next day, the adrenalin is gone and one little thing (walking to the kitchen from the bedroom?) is enough to use up the rest of the juice and there you are!

For special events like this, try to get parked as close as possible (can you get a handicap tag for vehicles you ride in?), don't walk around any more than you absolutely have to to see those things your grandson is in and find a place to sit every chance you get, make sure you stay in the shade as much as possible, or wear a floppy hat to shade your head ( I prefer straw cuz it ventilates my head) and if possible get yourself a "cooling vest". These can be purchased online for all kinds of different prices, and have little ice packs that slip into them to keep your core temperature down. I have just put ice water on my neck and chest (and even doused my head in cool water) in the past to keep cool. May not look nice, but whatever it takes! And as Kate said, when you have the opportunity to plan ahead, plan on a restful day before (store up more juice), and after (replenish the juice).

I have found I need this strategy for visits from out of town guests, family gatherings, etc, although I have been know to disappear for a nap during gatherings. The day after ALWAYS gets me, just not as badly when take the precautions.

Hope you feel better soon! It's the pits having to pay for what should be a joyous outing! I'm sorry it affected you.

P.S. I'm not overweight, but am heavier than I ever was before. I have (normally) a very high metabolism so I was always a little on the underweight side to start with.