Hi Beth! Hi Jan!
I guess it's easier for some of us than it is for others,although there are days I have spent the entire day in bed due to stiffness/pain. I have not tried any medications yet, as i want to wait as long as possible without them to get the maximum effect.As long as I can go without it i will.I read some of the possible side effects of the meds and , frankly, I'm not impressed.

I saw something in the forums related to hyper-cold or something like that? what is that exactly,it seems like my problem gets worse in winter(indiana),and i do my very best to stay warm.

Something I really hate...when your throat muscles stiffen up during eating,and somebody assissts you by beating your back..all it does it make it worse...

Type of Myotonia: dw307,2

hi dave,
yes, i too have alot of difficulty is the winter months, even though i do live in Arizona and the winters are not half as bad as other states, it doesnt matter cold is cold and it effects us the same. It could be 110 degrees out side but if the pool water is cold, it still effects all our muscles the same, i am not sure what "Hyper-Cold" is. i am refering to an MD conditionn called Para-Myotonia Congenitia. I did not want to take the drugs either.
But it came to a point where i was so incredibly miserable in pain, i had no choice. I have not had an bad side effects by the med.s'---so far.

On really hot days it seams that i become weaker, colder days don't bother me as much as hot days. Because when golf starts it's nice and cool, and sometimes really cold, but then when it gets to really hot summer days, sometimes i feel really weak....

Hi Dave - I wanted to let you know that Naproxyn is the medication which is in Aleve and other over-the-counter meds. You probably got a prescription strength, like 500mg, but you can by the non-prescription strength in any drug store, and take 2-3 of those - it's the same thing. Also, I wanted to let you know that you can mostly avoid the swallowing problem if you a) swallow with an empty mouth before you start drinking or eating, b) be sure you begin with just a small bite or sip for the first swallow, and c) if you do tighten up, bend your chin in towards your neck and slightly to the side (a therapy trick we teach stroke victims and others who experience swallow issues, and breathe very slowly and deeply through your nose. Just don't panic, because that tightens the muscles even more. It's something we just have to live with, but if you stay aware, you can usually avoid it! (unlike the punched-in-the-stomach feeling you get when you sneeze!) Hope this helps - lois (lolonurse) oh- also - iced drinks make it worse.

hi lois i just read the answer you gave to dave about swallowing, very true, i think we do a lot of things automatically and dont even realise we are doing it ,it made me laugh ,what you said about sneezing.i hate getting cough's too, a bad cough can leave me bent at the waist and groaning for quite a while.

Type of Myotonia: MSN Messenger,3

oops - and maybe, the "hyper-cold" was hyperthermia? does that ring a bell? lois

thanks lois

Type of Myotonia: dw307,2