My symptoms have always been severe but recently they ahve gotten worse. I don't think anyone doubts that I'm disabled when I try to move whilst the myotonia has hold of the muscles.

That said, when I am feeling good I sometimes feel a bit of a fake myself, but it never lasts for long. Using Mexitil helps a lot though.

I also get tired from just a 'normal' day too. When you think about it trying to do a 'normal' day and push through the myotonia why wouldn't you feel tired?

Quoting Pete:
"When you think about it trying to do a 'normal' day and push through the myotonia why wouldn't you feel tired?"

Agreed!!!!

Isn't THAT the truth! Lois

Hi Pete,
Congrats on your finally getting assistance. I also just got mine in February of this year, but I have spondylolithesis (bad back) and heart arrythmias, as well. I also have Beckers type.
I have twin 11 year old boys that I am trying to keep up with and I can tell you that I "conk out" right after dinner. I feel guilty that I can't take them biking and play soccer with them, and I push myself too far.
I am having alot more pain and stiffness, lately. My hands are extremely painful and it takes me a while to be able to stand up straight, after I stand up. Do you think I should start taking the mexetil, or try something else first?

Hi Sue!

Mexitil is a great benefit to me, it does not suppress the MC symptoms 100% but it certainly helps, not just with the stiffness but also with cramps and twinges which seem much less severe than they used to. I'm also less tired than I used to be at the end of the day too. However, this relief is a side-effect of the drug which is usually prescribed for arrythmic heart conditions.

My son is 11 and a keen football player, it hurts not being able to kick a football with him, I'd fall over if I tried, but he's very understanding and quite happy as long as I'm there to watch his matches whith his Sunday League Boy's Team.