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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Shoulder and neck pain

WTKlavier
WTKlavier
I have been on CellCept since early April and cannot believe how it has helped. Over the last four months I've tapered prednisone from 40mg/day to10, and have stopped using Mestinon completely. For at least three months I have been bothered with neck and shoulder pain, but only when doing three things: playing the piano, working at a desk top computer and driving more than twenty minutes or so. I have been having physical therapy which helped but the discomfort never seems to go away. Anyone else troubled with neck or shoulder pain? Any indication what cases it? Any suggestions beyond physical therapy?

I can't tell you how important this group has become in dealing with MG. Thanks for being here.
limpnoodle
limpnoodle
Yes, definitely. My pain is brought on by the activities you named along with others. My neck muscles are very weak, and anything that requires sitting totally upright is not good for me.
I jokingly call it my five hundred pound head, because it feels that way sometimes.
Your head is really quite heavy, but you don't notice it until you have problems with muscles. I have the most trouble when on a bumpy road because it requires much more strength to keep your head in the correct position so you don't look like a bobble head.
annkemp
annkemp
yea I had pain once...
I attributed it to over use of the area that had pain. Extended periods in one position give us trouble.
Piano would cause some kind of problem for me.
Oh I remember now...I felt pain when I was on computer for a long time
on the arm I was leaning on.
Life is full of surprises.
annkemp
annkemp
physical therapy would make matter worse for me. Rest is always my best friend and then I slowly as exercise.
I would stop therapy.
I wasn't able to drive over 20 minutes for years.
I can do a hour now and that is about it.
You could also try neck brace. Soft foam one. They help neck area.
I use it when I drive if I am tired.
Barbel
Barbel
Any over use or strain of my muscles causes me pain. Take rest breaks every few minutes and see if that helps. Activity/rest/activity before you get tired is my goal, but rarely happens. I push myself if I can, but that is never good. I use a neck pillow to sleep. Good luck.
Barbel
Barbel
What about trying mestinon again? It might make a difference.
Dealmaker
Dealmaker
I highly recommend PT however, physical therapist offers a huge variety. I would not recommend one that is associated with an orthopedic group or hospital. I prefer a PT group that primarily works with athletes or those that "execute" the given exercises at home.

I've been to both types and find those PTs that works with at athletes are most concern about preventing problems by our improper functions. Such as how we sit, sleep, exercise and even eat.

I would highly encourage you to exercise and send me a PM if I can help you find the right PT. Shoulder and neck pain is very typical for us that sit and use computers.

Best wishes,
Matt
Dealmaker
Dealmaker
Dealmaker
Kelly Starrett is the BEST PT in the country and works w/ professional athletes, Crossfitters, powerlifters, and even computer jockeys.

I use PTs that follows Kelly's techniques and I learn from him on my own. I see that Kelly has a new book coming out soon called DeskBound - buy it when it's released.

Here's an article and some videos to watch that will help.

http://www.marksdailyapple.com/16-tips-for-desk-jockeys-what-to-do-about-sitting-all-day/

https://www.youtube.com/watch?v=jRozBCFU_pA


http://www.marksdailyapple.com/16-tips-for-desk-jockeys-what-to-do-about-sitting-all-day/

https://www.youtube.com/playlist?list=PLqlOCY1MUzgAHknAyNPwjW825skQghNu1
Dealmaker
Dealmaker
Not to overwhelm you here are some full length videos of Kelly

This series are for "creatives" that sit all day like you and I...

https://www.creativelive.com/courses/session-live-healthier-life-kelly-starrett-tj-murphy?utm_source=creativeLIVE&utm_medium=email&utm_campaign=KellyStarrettSeptLive

https://www.youtube.com/watch?v=3WOpb8PrrSc&feature=youtu.be
chuckie1
chuckie1
yes I have shoulder pain but when I get a good massage I do not have pain for awhile I have tried pt. it helps but doesnot relax the mussels also try heat.
Good Luck hope this helps
Chuck