"managing" the illness
 

A basic question, not really related to the diagnosis issue: What is the best way to manage muscle fatigue that interferes with tasks you need to do?

For example, when you get fatigued, is it OK to rest until you can go back to the task, or is that not good in the long run? .... let's say you are chopping veggies and your arm muscles fatigue. Is it sufficient to wait until you can pick up the knife and chop some more, rest, chop, rest, chop until the job is done? Or is the short recovery, intermittant rest technique going to get me into more trouble -- like a more generalized fatigue? When that happens I can get winded very easily. It's a little scary, actually.:eek:

Thanks for any and all responses. I'm trying to get an idea of what it is like to live with this...

Happy holidays, all!:D
-Shari

Shari, I've been coping with MG since the 1970's. What I've always done is work a little, rest a little. I've never had any long term trouble out of resting the affected muscles, then going back to doing the same thing. Although the 2nd or 3rd time around I am not able to do nearly as much before fatiguing, and usualy eventually have to quit for the day. But the next day I can be right back at it.
One trick I learned years ago is to mix up my tasks. That is, do a little of one thing, then do a little of something else that uses different muscle groups, or even the same muscles, but in a different way. That way, I am able to accomplish more before I have to take a break.
Interesting thread, I'm glad you brought it up, and I'll look forward to the hints the others have.
Hugs,

Hi Shari and lois
 

Thought that I would respond to this, since its my biggest hurdle :D
I am one of those people that when its a good day, I'd run like heck, and try and get as much done as I could, then I would drop and wouldn't be able to do anything for days, sometimes weeks. :o
I did get myself into trouble, because I just kept pushing until I was so weak.
I learned that its best not to do that, rest when you have to, and pushing is not a good thing.
Now everything in moderation. Any heavy stuff my husband does, ie vacuming is one thing. :D
When I cook, I use a serrated knife for cutting veggies and stuff, the hardest first, like carrots. With the serrated knife you don't have to push.
And then my husband helps again. I don't know what I would do with out him. :)
I try and sit when I can, like folding laundry. Always looking for ways to conserve energy.
I guess that you just learn as you go, everyday is different.
Its really is hard on your mind, to get your brain around not being able to do the stuff that you use to take for granted.
I still have problems with that :(
Hope this helped some, take care, Patricia :)

Hi Shari.
 

Hi, Well, this is what I do. I'll do a little of the dishes, go sit down, do some more...etc.. So yes that is the best way to deal with the arm fatique. I have to, other wise I'd never be able to accomplish anything.
Sometimes it can get very discouraging, but other times ,it makes me feel like, I can do it, it just has to be done a different way.
Love Lizzie

Hi Shari
I am still trying to figure out how to manage this illness rather than letting it manage me. I have decided to do the things I want to do first and then do the rest. I finally hired a kid to shovel and so far we haven't had any snow! I have someone come in once or twice a month to vacuum and do the floors and clean the bathroom really well - not that expensive and definitely worth it. I try to do something with my daughter early in the evening so I still have some pep. I take Provigil and it helps some. Good luck - I think it is one of those things that you just have to keep adjusting to - some days are great - some aren't - do what you can and don't worry if the dishes are still in the sink when you go to bed...one of my friends just uses paper plates:icon_wink:
Gabe

Gabe, I like your solution! Wish I could do the same, hire someone to come in occasionally. But, alas, a fixed and very limited income requires me to do my own thing: I do what I can, then do my best to ignore what I can't! :D
Works OK for me as long as no one drops in to visit!
Shari, I hope you're doing well, and finding your own personalized solutions to this dificult and aggravating disease we live with.
Hugs,

myasthenia is taking over
 

Hello, I was looking for a site like this for a long time. Hope there is someone out there that can help me get thru this! In Jan. 2006 I was diagnosed with MG and seemed to have been going up and down since. My symptoms are double vision, shortness of breath (all the time)(VERY SCARY), severe fatigue/nausea (all the time), weakness in my arms and sometimes my neck and face. I also have some anxiety and depression and just recently was diagnosed with gastroparesis (which I'm told is very rare in myasthenia gravis)(I CAN BARELY EAT ANYMORE!). This disease seems to have taken over my life physically and emotionally! I am 29 married w/2 daughters an I feel like a failure to them because I am unable to do alot due to being sick most of the time. I 've been thru a series of treatment none seems to be very effective or seems to last I just feel like giving up most of the time. I had a thymectomy in march 2006 shortly after being diagnosed but I am still not feeling any better from that. That year my doctor gave me mestinon which made me cramp and did not seem to work anyway, then she tried prednisone which gave me strength but did NOT help my breathing and my eyes (it also gave me cosmetic side effects) which being a young women bothered me alot. So, my doctor then tried IVIG which I was hospitalized for a couple days because I was getting very weak and that continued outpatient 2x a month for a year. I was good for a while with no meds and then I got sick again. My doctor wanted to try something new so I did plasmaphersis 2x over the next couple of months (which made me severely sick to my stomach). but worked for a very short period of time. In. Sept. 2007 I started getting weak again and ended up back in the hospital for IVIG again last week. I was released 2 days ago and was told to start prednisone again (I decided to try again and worry more about my health then my appearance this time) also mestinon again 1/2 pill to start to limit cramping. It has only been 2 days and I feel so fatigued, sick to my stomach and weak I don't think I can get thru this. I am so scared and afraid I want to give up but I try to hold on for my family! I often pray to God that a miracle will happen and I will wake up tomorrow healthy again. It's hard to believe just 4 years ago I was coaching my daughters cheerleading and now I can barely take a simple bath without being exhausted. I need help, I'm scared, depressed and desperate for answers!

Will respond back tomorrow, hang in there. Did the I.V.I.g. help you. Can you stay on it? Have you had a good G.I. work up. These meds can do a number on your tummy. Did the doc give you one of the stomach meds to ward off problems from the steroids? Steroids can make you weaker in the beginning.If you dont feel well like you wrote in your post call back the doctor, pronto. About the breathing, tell the neuro and I hope you saw a pulmonary doc, if not go see one. I hope you are ok, keep us posted. Hang in there. Try to stay calm I know easier said then done but it will make your M.G. worse also. Let your doc know too how you are.

muscle fatigue
 

Shari, If you don't rest you may chop off your finger. Myasthenia Gravis in Greek is "Grave Muscle Disease". 3 years ago I could not brush my teeth because lifting my arms that high was impossible. By listening to my body and pushing it as often as possible, I now go to the gym, horseback ride, golf and ride my bicycle weekly. Do not get impatient and keep forging on. If you only have a handful of energy, be sure to use it wisely. You can not expend what you do not have..
Merry Christmas,
Vicky

A little late for replying to this thread but it caught my eye. I used to work in restaurants before and after a while I started having the same problem with not being able to hold the knife. But being my stubborn self I still kept at it until my hands wouldn't even open up from being to tired. I look back on it now and just shake my head at what I did and how much worse it got for not resting. I was a workaholic by the way, started at 6am and finished at 12 am. One thing that I have noticed before that I never payed any attention to is the small gadgets that you can buy that will help take the load off your arms and hands for doing cutting. Now they have out pretty much what ever you need for cutting and if you want it done it doesn't take long. Just a thought there for you if you don't want to use a knife for cutting or chopping.

P.S. Always use a sharp knife though, doesn't take much to cut anything and not as dangerous as a dull knife ;-)