Thanks Jan

Morning Jan,and everyone,i really meant standing as aposed to sitting,if i have to stand in one place i.e. queueing,ironing or waiting for a bus,makes me more stiff than say, sitting when standing you are'nt moving but not relaxed either,maybe the muscles being tense enouph to hold you up but not really moving much is worse for them to get going,when you want to ,am i making much sense?..There's been lots of rain in England..damp not doing me much good either..grass is really green though,there's allways an upside. hope everyone is feeling well...xxxfrom the uk.

You are making perfect sense of this particular symtom, as you do I to experience a stiffness after sitting or standing for a certain period, with the weakness that follows you get more worried regarding an accident, I've spoken to my neurologist regarding a muscle relaxer and he prescribed Cyclobenzaprine 5 mg which I take 1 tab at bedtime, along with Mexiletine 150 mg in which I take 3 times per day, it helps somewhat, you must idenify your strenghts and limitations, I can't stand or sit immoble no longer than one & a half hour before I move, lifting and carry is hards as well, the important thing is to rest and not get over worked. You may also consult a physical therapist as well to do strench exercises.

I completely understand your fustration, but what you need to do in my opinion is pace yourself, try to relax time your contractions, for the most part your muscle will get back to normal in about 45 seconds after immobility, although this is a deep concern of mines going on my 50th birthday my stiffness is under control for the most part of my pacing, lifting and standing, under your body take the time to really notice yourself, after a couple of days you will have a better sense of your limitations, for instance I could walk 1 mile, return with 5lbs of sugar and completely become stiff as a board about a half a hour, with medication I become loose and try it again the next day, to my surprise it happen again so I adjusted, I took a bue there and walked back, no stiffness nor weakness, this applies to just about everything, your diet plays a role as well, I keep my weight to 155ibs and I feel good, I added 9 pounds and felt extremely tried more often, just a few things to keep in mind, stay positive worrying isn't good for any of us, I wake up with NO problems and I don't get into them either.

I know just what you mean - standing waiting for a bus, or for a traffic light to change, would mean stiffening up and then either falling up the bus steps, or walking really slowly and stiffly across the street, in front of all those drivers wondering if I was taunting them - but I didn't want to fall down and then not be able to get up before the light changed - How terrifying!! Lois

I feel the same way, I look for instance living in the streets of NYC how fast the pace is, very stressful to say the least, now I'm in very hot sunny Tampa, Fl where you can walk at your own pace, to my surprise the stiffness and weakness is more worst for some reason, maybe it's the rain and or the more actitives I do, I do walk more than ever before, so I'll monitor this more and should know in several weeks. but overall I feel relax which is the bottom line to our condition, RELAX as much as possible. Keep me posted

This is very true I realized that although the heat maybe a bothersome, it became obvious to me that my centarl air conditioner is the cause, as for some of us the cold brings up stiffness for some reason, with this in mind I've set the themostat to a comfortable 81 degrees, along with short walks and strench exercises I have some pleasure, but still have fatique and weakness some part of the day, as such I pray and just take it easy, P.S. that's a great idea we all should form our own community and enjoy life, let me know if one exist. I was wondering if any one knows the effect of your CPK levels have anything to do with fatique.

Hi Howard - As you may have read in some of the postings, a lot of us have a problem with heat tolerance, mostly made worse where there is high humidity. When we moved from NYC to San Diego, I noticed some decrease in some of my most frustrating symptoms. They are still there, but usually easier to deal with unless it is humid, or I am stressed or scared. So, apparently, we have cold intolerance, AND some humid heat intolerance - so we should all start a big myotonic community in the desert, and become desert rats! Lois

How's this - a totally eco-friendly, green community, with windmills, solar panels, electric golf carts, and a big, heated pool and spa - and our own organic garden!? Well, I can dream, can't I? Lois