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...
Hiya folks. This is going to sound strange, because it feels strange to me. But I figure you guys are best to answer, since you all deal with what I do too.
So tonight, I went out to a nightclub with a group of friends. On my strength scale, I was about 35%, which while low, I could still go out by my rules. I figured I would just stand there, and enjoy the music, and maybe bop a little. Nothing too intensive.
We get in, out of the cold, pay our cover and all that, and go down to the dance floor and enjoy the band that was playing there. I was really enjoying myself, when I noticed that I was getting stronger. I have no idea how, but as more time went by, the stronger I got.
So with this new found strength, I started to dance, not too hard, but definitely more then bopping, and yet, it didn't phase me at all. I continued to increase, and within I'd say 30 minutes or so, I was at a never before hit 100%.
I haven't felt that good since I first got sick, and I loved it. So I went full on, completely losing it dancing, and completely forgot about the fact that I was sick, that I had to be careful, or anything. I let go, and just released whatever I was feeling, and it was amazing. Tonight, I had not a care in the world, and I felt so free, and happy, and wonderful.
I didn't take anything, I didn't even drink anything. But at the same time, I have no idea what happened. After we left the bar, and got to the car, I sat and felt that 100% plummet down to 15%. That is where I am now. I'm extremely sore and tender in all my muscles, I can barely walk, eyes are definitely screwed up, and the wide array of "I have MG," is definitely back in my head.
And you know what, at this point I don't really care. Normally at 15% and under, it is worry time for me, I start monitoring everything about me, and am in bed not moving. Tonight, I just don't care. I am heading to bed after posting this, but I will be very happy to deal with the punishment of what my MG will bring me tomorrow and probably Friday.
So the big question is, have any of you experienced this? If so, what in the world happened? How can I achieve this again? I am so lost as to what happened, and it sort of makes me feel like I'm crazy or something. I don't recall this ever happening before, but I do remember going to bars back in 2005 with my ex and I could rock out for hours and not be weaker until I had to get home. But I never increased. I figured it was adrenaline from the music that kept me at the same level.
So any feedback would be great, and as always, thanks for the guidance help and support. It means the world to me.
So tonight, I went out to a nightclub with a group of friends. On my strength scale, I was about 35%, which while low, I could still go out by my rules. I figured I would just stand there, and enjoy the music, and maybe bop a little. Nothing too intensive.
We get in, out of the cold, pay our cover and all that, and go down to the dance floor and enjoy the band that was playing there. I was really enjoying myself, when I noticed that I was getting stronger. I have no idea how, but as more time went by, the stronger I got.
So with this new found strength, I started to dance, not too hard, but definitely more then bopping, and yet, it didn't phase me at all. I continued to increase, and within I'd say 30 minutes or so, I was at a never before hit 100%.
I haven't felt that good since I first got sick, and I loved it. So I went full on, completely losing it dancing, and completely forgot about the fact that I was sick, that I had to be careful, or anything. I let go, and just released whatever I was feeling, and it was amazing. Tonight, I had not a care in the world, and I felt so free, and happy, and wonderful.
I didn't take anything, I didn't even drink anything. But at the same time, I have no idea what happened. After we left the bar, and got to the car, I sat and felt that 100% plummet down to 15%. That is where I am now. I'm extremely sore and tender in all my muscles, I can barely walk, eyes are definitely screwed up, and the wide array of "I have MG," is definitely back in my head.
And you know what, at this point I don't really care. Normally at 15% and under, it is worry time for me, I start monitoring everything about me, and am in bed not moving. Tonight, I just don't care. I am heading to bed after posting this, but I will be very happy to deal with the punishment of what my MG will bring me tomorrow and probably Friday.
So the big question is, have any of you experienced this? If so, what in the world happened? How can I achieve this again? I am so lost as to what happened, and it sort of makes me feel like I'm crazy or something. I don't recall this ever happening before, but I do remember going to bars back in 2005 with my ex and I could rock out for hours and not be weaker until I had to get home. But I never increased. I figured it was adrenaline from the music that kept me at the same level.
So any feedback would be great, and as always, thanks for the guidance help and support. It means the world to me.
It sure is interesting. I think it is the release of "happy" juices(hormones) into our body that does this. Yes, I have experienced it many times.
I get that release of happy juices when I prepare for my children to come home. I get so happy and enjoy the preparations so much. I am up late cleaning and listening to music.
They arrive.....
And I die.
Sad part is I have learned...if I get too happy I will get set back. Very challenging but I have learned to manange.
Now I prepare early so I have time to rest but I am still usually so happy I can't rest.
Oh well ...it is what it is. But no you are not crazy...just part of the group. This has also taught me....happiness is healing if managed well.
have a great day
Ann
Also, never under estimate how much our happiness affects our body! You should be engaging with people whenever possible, surrounding yourself with positive people and positive things, in short striving for happiness! That will definitely help combat most any disease.
Kimber
Back when I was at my worst, I found that sometimes there were breaks in MG--and for a few hours or maybe a day I felt lively again, although I don't think I ever sparkled or danced the night away ;-)
Most descriptions of MG include "characterized by variable weakness..." So I guess that is the nature of the beast.
Something similar to this happens to me. It is true that for me repetitive motion causes exhaustion of a specific muscle just like the clinical description of MG promises, but to a certain extent, physical activity makes me feel better, even if I'm already a little tired (especially when combined with a good mood!). Many many times I've gone running, gone for a walk (alone or with a friend who I was glad to see) or just been dancing in my room alone; and right after I start moving, the endorphins or whatever make my overall energy level and MG symptoms both improve. Early in my illness, my best friend noticed that when we were hanging out, it was much easier for me to talk if we went for a walk than if we were sitting down somewhere. And when I go for a run (if I don't overdo it), my chewing/swallowing improves for several hours afterwards. I think it's a combination of the endorphins and having a task to distract me, or the positive feeling I get from seeing my friends. Because there's no surer way to feel terrible than to sit around thinking about how shitty MG is!
So it sounds like maybe you would benefit from regular dancing? Just make sure to not force yourself if you really are too tired and are not getting the magical surge of energy. With time, I am learning to tell the difference between "I'm tired and need to go for a walk" and "I'm tired and need to take a nap." A couple of times lately I've gotten all ready to go for a run or walk, realized I was wrong, and then laid down and fell asleep on the couch, shoes still on my feet. Ha.
I have noticed a common theme, that happiness drives this. I have a question about that. If I'm happy, shouldn't I generally be in better spirits anyway? I know emotions play into it, and when I'm really happy, I sometimes do have a couple decent days in a row, but for the most part, no matter how happy I am, it doesn't effect me this way. A few months ago, I had a weird relationship thing, and I had never felt so happy and euphoric in my life. But my MG was still there, and I never got to where I was. Using that as an example to try to draw comparison.
It isn't rational to me, to have such a night like that, but honestly, I'm still glad I had it. I've been recovering since then, hence my lack of being online much. Been mostly laying in bed watching tv, and struggling to get upstairs to make simple things to eat. It is still totally worth it, and I'm finally starting to get back to my normal place.
Vieve, I have the same issue with the repetitive motions. It is the main reason I find exercise so daunting a task. I do try still, but it is hard some days. Running for me is out of the question, but I dare to dream that one day I might again. Think I need to fix my lung issues before that though.
I tell ya, this disorder gets to be confusing sometimes to me. I think I have it all figured out, and it surprises me. A year ago, I wouldn't of ever dared to do what I did Wednesday night, and now, I feel sure enough about myself, that I am willing to take the chance and go live my life, and enjoy life. And I have all of you to thank about it transition. If it wasn't for all of you, I'd still be scared, and afraid to do anything. So thank you, from the bottom of my heart. Wednesday night is because of you guys. :)
One thing with MG is that without a fight and some optimism and life that involves other things, (and a good neuromuscular specialist is a decided plus), our chances for overcoming this are greatly reduced. This is not something that we can wish away or have someone else take care of. More sparkle days to us all! b.
Be well,
I'm working on finding the neuro now. Been doing my research and got 2 appointments set up with 2 doctors for June and July. It is sad it takes this long to see one, but better sooner then later I guess. Hopefully, they will be willing to help me.
There's optimism in context :-) Not to mention asking to be put on their cancellation list! (And hope they don't ask to see you on the same day next week.) I am partly teasing, but mostly serious. You have to be yourself and say what you feel. Sure they may let you down, don't we know it, but expecting disappointment just allows you to experience it in advance! And if they don't see you until June or July, you have time for more sparkle days and to practice "getting it."
Good luck, b.