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...

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heading towards padded room

Elle114
Elle114
I feel certain I'm heading towards a complete melt down. Two days last week were good and I was so happy. I hardly had to take much of the mestinon my symptoms were good. Then another wave hit & I'm down again. Which I might b able to handle if I wasn't crying nonstop, I presume fueled by the prednisone. I can't sleep which I'm sure isn't helping and I don't understand since I thought MG makes u tired. I wake up aching all over especially my jaw that hurts a lot. I don't understand that either, since I thought after rest I should feel better. My husband says I'm not grinding my teeth or jaw during the night.

In any case I hate all this crying & depression, yet don't really know what do to makes things better. Seems like a non stop battle. Sorry I know it says on the website to keep it positive. Which is laughable since I've yet to read one damn positive thing regarding this dx. Sorry it's just a bad day.
Barbel
Barbel
I had to learn that mestinon helps us best when there is a steady flow in our system. I used to take it "as needed" but encouraged by my neuro yo take it round the clock really helps me. It is very distressing learning how to deal with this disease. I am resting on the sofa now , all I did was fry some bacon and clean up the kitchen ( I think it was the wiping off the counter and appliances that got me ) do I am resting for awhile and then I will try to do something else. Learning our limitations is very difficult especially when you are used to being so active. I am sorry that you are having a bad day. Take care. Big hug! Barbel
SamiWells
SamiWells
Maybe your doctor can give you something mild to help you sleep.
deleted_user
deleted_user
Hey there kiddo...Yes unfortunately there will be good and bad days with this disease, roller coaster..Ive been having leg aches for days now..havent had them in years so always something..Anyway Barb is right think it is better to stick with steady flow of the meds you are taking...Take amount everyday that neuro has prescribed...Even when you feel better dont not take etc..keep taking and eventually hopefully you will be able to taper off on amounts etc....Think works best that way...And REST as much as possible..I to am sorry you are having bad day, I to am if that helps..ha...hang in there and take the meds...better days are coming ......Hugs
Bamboolilly
Bamboolilly
I empathize with you. Even now, when I think I'm better-wham! There it is again. I finished ivig on thurs. Yesterday felt great, right now, ready to take a nap. When I was at my end, I asked neuro for a referral of someone to talk to. In the beginning I also took Xanax. Both helped. Sending hugs your way. And i get jaw soreness too, especially after I had a filling replaced a month ago. Our muscles fluctuate a lot with the level of antibodies. One thing-as much as you may crave it, stay away from sugar. It only exacerbates the mood swings.
Hugs, and vent here--I've had more love and support here than home.
limpnoodle
limpnoodle
The prednisone can cause sleep problems too. Hooe you feel better soon.
DebbieF777
DebbieF777
Gentle hugs. It is a wild ride at times.
SeattleWriter
SeattleWriter
Elle, I really recommend the book Chronic Resilience. It has some good strategies for coping and adjusting, not just "accepting." It sounds like you're maybe a bit like me--I have a hard time not being in charge of things, and it's depressing when things feel out of my hands. Hugs!
Cj416
Cj416
Elle ,

The prednisone caused so many sleepless nights that my mornings at times felt like the middle of the night. One of the thins that worked well for me was Benadryl and it's basically fairly harmless and won't interfere with your current meds.

When our mg is exasperated it is without a doubt the most frustrating instability of mg and it always seems to occur at the worst time. Bamboo mentioned Xanax and that helped me as well and won't contradict any of your meds. Don't suffer be pro active and call your neuro soon.

Cj
chuckie1
chuckie1
ELLE
I KNOW ABOUT THE SLEEPLES NIGHTS AND IT SUCKS ,THAT IS DUE TO THE MEDS AND THEN THERE IS THE CRAMPING OH BOY,YOU ARE RIGHT WHEN YOU SAY IT IS HARD TO FIND SOMEHTING POSITIVE THAT IS WHY WE ARE HERE,
SORRY I DO NOT KNOW WHAT TO TELL YOU BUT THAT I AM IN YOUR CORNER AND SO IS EVERYONE ELSE. YOU ARTE RIGHT THIS DEASE IS SOMETIMES A KICK IN THE BACKSIDE BUT WHO KNOWS YOU MAY JUST HAVE ANOTHER GOOD DAY BEFORE THE WEEK IS OUT.
Chuck
annkemp
annkemp
I can't remember how muh prednisone you are on.
Sorry you are havin so much trouble.
When I was on 60 I was crazy.
Too embarrassing to even type. I don't know if I could have put up with what my husband put up with.
I had to take sleeping pills when I was on high doses.
Lately I have had trouble sleeping on low doses.
Lately I take tylonal pm and it helps.
You will do better. Just try to find something that brings a bit of joy.
When down it can be hard.
Tomarrow will be better.
It doe get better......I feel like I can promise you that.
annkemp
annkemp
One positive thing.....
It has made me a better person.
Ann
deleted_user
deleted_user
Elle,

I hope you feel better; and don't worry, padded rooms are not really all that bad. Remember to smile, even if you can't do it quite right. Just trying will release those happy endorphins and make you feel a little better. You have a lot of supporters out here, and we all want you to feel better. You will never be alone here; ever. - Scott
DEEW4
DEEW4
Never take prednisone after noon. My doctor say best with breakfast.
deleted_user
deleted_user
There are so many side effects to prednisone and unfortunately not being able to sleep. I go through periods where I can't sleep at all. During that time my MG always seems to be worse. Everything seems worse. Like you prednisone makes me cry. When I'm not sleeping everything makes me cry. I have never thought of a padded room, but I like the idea. Sometimes I could use a padded room.
ray2me
ray2me
Hi , I don't know what dosage of prednisone you are on but my Neuro put me on 40 mg one day and 0 the next , then 40 again. He said it helps with the bad effects of prednisone without effecting the good more than 20 mgs everyday. It did help with me . Good Luck , Charlie