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...
Here's one for everyone to loose sleep on!
My personal experience that has happened multiple times.
I have to first preface this with my MG is pretty well controlled. Not 100%, but I am well enough to run, work out, etc on a normal basis.
With that said, today I planned on doing a weight training chest and tricep workout for the day. I did my warmup dumbell press set, then proceeded thru my next to sets and realized the MG wasnt going to let me get thru my workout, the way I wanted to.(Wobbly triceps, not a good thing holding 60+ Lb. dumbells) I also must add that my chest muscles have been quite resilient to MG, but my triceps seem to be a main target of MG.
I then switched from the weight training workout and got on the treadmill to try and salvage some kind of workout for the day. I set the treadmill speed to 6.0mph. By the time I get to a half mile I am fatiguing. Legs get heavy etc. I push thru a mile, then slow down to a 3.0mph walk thru 1.25 miles. I then pick up the run again to 6.5mph and run until 2.50 miles at that speed, feeling a little stronger.
I walk thru 2.8miles, then begin running again on 7.0mph and run 5 miles total. Slow down to a 3.0mph walk to cool down, and hop off.
Afterwards the only fatigue I feel is true muscular fatigue in my hips and legs, MG seems much better than when I started my workout.
This has happened before as well. Has anyone expericenced this? It has become one of the things I lay in bed at night and loose sleep over!
If nothing else, I figured I would share this with everyone here.
:)
My personal experience that has happened multiple times.
I have to first preface this with my MG is pretty well controlled. Not 100%, but I am well enough to run, work out, etc on a normal basis.
With that said, today I planned on doing a weight training chest and tricep workout for the day. I did my warmup dumbell press set, then proceeded thru my next to sets and realized the MG wasnt going to let me get thru my workout, the way I wanted to.(Wobbly triceps, not a good thing holding 60+ Lb. dumbells) I also must add that my chest muscles have been quite resilient to MG, but my triceps seem to be a main target of MG.
I then switched from the weight training workout and got on the treadmill to try and salvage some kind of workout for the day. I set the treadmill speed to 6.0mph. By the time I get to a half mile I am fatiguing. Legs get heavy etc. I push thru a mile, then slow down to a 3.0mph walk thru 1.25 miles. I then pick up the run again to 6.5mph and run until 2.50 miles at that speed, feeling a little stronger.
I walk thru 2.8miles, then begin running again on 7.0mph and run 5 miles total. Slow down to a 3.0mph walk to cool down, and hop off.
Afterwards the only fatigue I feel is true muscular fatigue in my hips and legs, MG seems much better than when I started my workout.
This has happened before as well. Has anyone expericenced this? It has become one of the things I lay in bed at night and loose sleep over!
If nothing else, I figured I would share this with everyone here.
:)
Appreciate your post...
For me....exercise minimizes my MG symptoms....not necessarily a popular post on this forum....
My short story...I'm 62...may not be that short..... :)
had MG symptoms as a child....drooling eyelid...open jaw with drooling...weak arms/legs/neck....
In the 1950s....wore an eye patch and a ball cap with a rubber band under my chin to close my mouth to stop the drooling...
Navy boot camp in 1967....symptoms were the worst ever....couldn't raise arms , couldn't walk.....It was Viet Nam....I stayed in the Navy...spent 10 years......with varying degrees of extreme weakness. Finally DX with MG in 1991...
I have always been active.....when my symptoms haven't held me back..
Avid backpacker and runner in the late 70's and 80's......still an avid runner today. For the last seven years....run 3 half marathons in San Diego from times of 1: 40 to 2: 30, depending on my level of fitness and my symptoms....
My regime....
25 - 40 miles a week running - 4 -6 days a week gym workout with weights .....
I was finally DX with MG June 1991....put on 60mg mestinon 4X daily....in 2006 added 180mg timespan at night....
After 20 years on Mestinon still going strong..
Hang in there....you're doing fine... :)
I've noticed that as far as aerobic exercise and minimal strength training is concerned, that after the workout I do feel a lot better.
Strnger even.
But some days I feel so wobbly that I can't even get started.
I'm trying Pilates and hope to start jogging soon.
I think it's got something to do with the increased blood flow, which may help to imrpove the delivery of medication to our bodies via the blood. Or somehow the increased oxygen helps.
i think all these little signs are important as it may be a clue to finding the cause of MG and ultimately the cure.
Another thing I've noticed is that in the mornings, provided I've taken my nighttime mestinon, I feel completely fine, Like before MG.
but by ten am it quicjly fades. The observation is that even if I sleep 2--3hrs during the day to rest muscles, it's not as effective as the morning. It may be the extra huors sleep, but I think there is a rejuvenating process that happens at night that somehow helps more in the morning.
I don;t know.
just observing.
Take care
Fatima
I cannot imagine trying to fight Vietnam with MG. Maybe it was a good thing you did not know you had it then?
Fatima, thanks for the reply! Keep working towards the goal of jogging! If you are strongest in the mornings maybe try jogging then.
:)
I had started running on the treadmill in Feb, and I think I may pick that up again on the weekends. Reason I haven't been doing it lately is because I was very busy and still busy at work for last couple months, and I am on my feet almost all day moving to and fro, and lots of walking. I get worn down at certain times, but I must say that I feel better on those days and the day after, then I do the day after I sit around the house hardly doing much of anything. I believe staying active is a key factor! Including being social. I need to do something to improve my resistance strength for sure. Any tips? Should I just incorporate some resistance training in my workout when I get a "plan"? I don't know how far I can walk or run right now, but I know it is certainly further than I could at the end of last year...I would like to add that I have been told that the workouts must always take place when we are at our strongest. I know if feels good to take my breaks at work(and sit down) during my 8hr days...There are times when I can feel the pressure getting to me, and I have to stay focused on the task at hand. Do not let any stresses overcome my mindset..
TJ
The engineer in me says to list possible reasons...does repetitive ach firing directly knock off the binding ach-r antibodies? does the increased bloodflow, sweating, etc. have something to do with it?
One thing I do is research more and more on how neuromuscular transmission occurs. The engineer in me wants to sit in on a EMG.
In regards to weight training, I can tell you I am much stronger with my upper and lower back muscles, my biceps...basically all muscles used to pull, rather than pushing. I.E.... my bench press strength has never returned,I think back to college when I could bench press 300+lb :( .... times change though and you have to be mentally tough here I guess.
When my hands and fingers cooperate I can though curl dumbells, do deadlifts, etc close to my "former strength"
Tips! Starting out, I would recomend using the machines to build up initial strength with all pushing motions. bench machines for press, straight bar pulldowns for getting triceps moving, shoulder press machine, etc. Free weights will end up being more problematic at first. Infact, when I do dumbell press, my last few reps end up awkwardly wobbly if mg is getting my triceps. I do though prefer using dumbells as oppose to a barbell straight bar, as if you need to drop the weight to the floor....you can with dumbells, simple as that.
I see from former posting MG is new to you. Were you physically active before MG?
It is so frustrating for me not being able to go out and play a game of basketball right now. I miss it so much! I was never much of a "workout" gym type fella, I used to love to even go out dancing and get worked up. Even though my "clubbin" years are done with, I would go out and get on down with my badself(or with my wife), if I could, or should I say, whenever I will be able to. You mention sweating...It is difficult for me to even get much of a lather going at this point, and I drink a ton of water. I have to rededicate myself, and summer will be here before too long. I had "official" onset last year when it got more hot outside, I should be able to sweat pretty easily then. Time will tell.
Thanks for the tips!
Anxiety? Its a possibility. I have always been a headstrong person and usually let that drive me thru the gym(my ipod is loaded with metallica,disturb, all that remains, bullet, etc.) Although I enjoy alot of classic rock, 80s, etc. outside of the gym.
I feel the key is to get out and enjoy yourself. I even found myself enjoying bike rides again ~ in addition to the motorbikes curt ;)
When im sitting out the couch thinking about how my MG is getting me, is the worst.....the best solution I find is to get up and darnit, go do something! :)
Best...
Mike you have a great positive attitude and I think that's great! keep it up