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Old 01-09-2010, 03:57 PM #1
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Hi fellow MGers. I need to find out if any of you have had any of these symptoms. I just started a new job and I have to stand on my feet 8 hrs a day. My feet do hurt alot when I get home, but that is not my major problem. While I am at work , I can work all day. On my days off I feel like someone drained the blood out of me and I just want to lay down and sleep. I can barely hold my eyes open. Has anyone else had this?
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Old 01-09-2010, 04:33 PM #2
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Quote:
Originally Posted by BARBARA356 View Post
Hi fellow MGers. I need to find out if any of you have had any of these symptoms. I just started a new job and I have to stand on my feet 8 hrs a day. My feet do hurt alot when I get home, but that is not my major problem. While I am at work , I can work all day. On my days off I feel like someone drained the blood out of me and I just want to lay down and sleep. I can barely hold my eyes open. Has anyone else had this?
Well, im 17 and dont work, yet going to school all day, i come home and am in DIRE need of a nap. If only for an hour or so, but then im right back to bed soon after.

Its impressive that you can hold a job standing on your feet for 8 hours, i dont think many could.


But you need to be careful, too many of those 8 hours good days, and shitty off days could get you in trouble.
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Old 01-09-2010, 05:06 PM #3
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Well, when muscles don't work, they don't "pump" the circulation as well (technically the heart is the pump of the body). And standing up drains blood downward. You may not be getting enough circulating due to it "pooling" in your limbs. And if you are dehydrated, it will be so bad that you may feel faint.

The only thing I can liken it to is when I was dehydrated from undiagnosed diabetes insipidus (water diabetes where you don't have enough diurectic hormone to absorb water). I felt like the life was sucked out of me all the time. And it wasn't only water but electrolytes that were off.

I'm with Tyson, I don't know how you can stand on your feet that long! I can't do it for long at all.

And when you stand, you use a lot more muscle strength and your MG will get worse.

I hope you will talk to your doctor about it.

Annie
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Old 01-09-2010, 06:30 PM #4
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I have often had something similar happen--if I have a relatively "good" day then I'm very tempted to just do a whole bunch of stuff because I actually have the strength and energy to do it, but then I pay for it the next day about 98% of the time. My pharesis doc told me that many of his patients have told him that this happens. I will add my voice to those saying they don't know how you are standing that long! You must have some good drugs or something! Good for you that you're able to do that, but as others have said you may want to be careful that you don't just completely wear yourself out and have your MG get worse. I wish you the best of luck and hope you can find a balance so that your off days are better for you.

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Old 01-09-2010, 06:42 PM #5
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MK, this is what happens to me, too...I have good days so I do a lot of things and then I pay for it for one or two days.

Also, I find I have no choice in this matter. I work 2 days a week and then I have to rest for at least one day and sometimes two between working. I wish I didn't have to work because I don't think these ups and downs are good for MG... I want to work more, but since MG came along I just can't do it.

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I have often had something similar happen--if I have a relatively "good" day then I'm very tempted to just do a whole bunch of stuff because I actually have the strength and energy to do it, but then I pay for it the next day about 98% of the time. My pharesis doc told me that many of his patients have told him that this happens. I will add my voice to those saying they don't know how you are standing that long! You must have some good drugs or something! Good for you that you're able to do that, but as others have said you may want to be careful that you don't just completely wear yourself out and have your MG get worse. I wish you the best of luck and hope you can find a balance so that your off days are better for you.

MK
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Old 01-10-2010, 01:27 PM #6
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I know what you mean. At work, I can work my full work day, some days I am on my feet for 8 hours. I keep a smile to my face and try to be energetic....I guess I keep pushing my self? Pretending on my part?

But as soon as I get home....I feel it. The energy is gone and I feel like I ran a marathon and plus some.

I was recently diagnosed with MG, over a month ago. I am learning how to read my body's sign and how and WHEN to rest and take it easy. And to NOT push myself.
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Old 01-10-2010, 02:28 PM #7
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thanks for all of your inputs. I felt like I was sooo unusual, being able to stand for 8 hours.. It is good to know I am not the only one that does this. I was wondering was I misdiagnosed? I know the ENG I had (I had 2) confirmed it but it didn't seem typical. Has anyone had LEMS?What is the difference?
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Old 01-10-2010, 11:29 PM #8
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I used to work and stand on my feet all day and looking back - I think I had MG then. I am not dx yet but suspect I may have it. My symptoms were there all my working life and gradually I got weaker and was called lazy and not a team player. But - I did manage it then. Prob could not now though. I used to lean on the counter when the Boss was not watching and have little rests but after a while the others would 'dob me in' so that is when the lazy tag started.
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Old 01-11-2010, 11:07 AM #9
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Hey Barbara,

Wow, I can't even imagine standing for that many hours and days. I sure hope you aren't over doing it. If this is something new happening, you should call your neuro and fill him/her in. I too use to do so much on days I felt strong and then end up paying for it on the couch for sometimes days. Now I only do that once in a while...just isn't worth the price. Take care and let us know how you're doing.

Hugs,
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Old 01-12-2010, 04:06 PM #10
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Default MG and strange symptoms

Hi Barbara,
I agree with what some of the others have said. I think you are overdoing it and then it is almost like you crash once you're off your feet. I am bad about doing to much at times and pay for it for a couple of days afterwards. I am having one of those days today where I can hardly hold my eyes open and feel completely drained. I am also amazed that you can stand for 8 hours! That must be tough. Try and rest as much as possible.
Kendra
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