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Re: Pain - Hot Tub Question

Hi Garett -
It isn't uncommon for doctors to lump myotonias together - since they are so rare, I think sometimes docs feel it isn't worth their time and effort to really understand the differences and nuances. But as Jan said, there can be some significant differences. Did you only have the CLCN1 test, or did they do the whole myotonia panel?

We have a pool and spa - we built it after I had an accident that seriously damaged my knee, and doctors and therapists recommended aquatic exercises.

I love the spa - I find it very relaxing and soothing. But I would suggest you wait to get your results, and also, maybe see if you can try a few sessions in a spa or gym or maybe you have a friend or relative with one in a community center or something. It's a big expense if you aren't really going to use it. But if you are, I would suggest one with a lounging seat, because the 2 things I am not happy with in ours are the number and placement of the jets (but ours is part of an in-ground pool, most stand-alone spas have lots of jets all over the place!), and the bench seating. Makes it impossible to really stretch out and be pampered, imo. Lois

Type of Myotonia: Myotonia Congenita, Becker's type

Country: USA

Re: Pain - Hot Tub Question

I just read the below on your open letter:

"When we participate in physical activities, such as sports, dancing or gardening, we often feel very achy, weak and often shaky and unstable afterwards, and have increased difficulties with contractions and mobility. The after-effects of an adrenalin-stimulating incident can make our entire bodies ache like the flu, and our muscles may react to exercise by becoming exquisitely tender and sore. This can persist for days."

I was really second guessing my MC since I have heard it is painless. The Flu body aches is what I am having most of the day.

Type of Myotonia: pending

Country: USA / NC

Re: Pain - Hot Tub Question

Hi Garett:

That's usually how I describe it; on the verge of coming down with something.

It's usually mild enough for me to ignore; after all, life goes on, but I do think some individuals with MC do experience very bad pain. I hear men speak of this more often. I think the degree of pain might also depend on the type of mutation involved.

I also get the shakeyness/mobility issues after a workout.

Type of Myotonia: Becker

Re: Pain - Hot Tub Question

As my wife would say "Men do not do well with pain"

Type of Myotonia: Pending

Country: US

Re: Pain - Hot Tub Question

Garett - I think your wife is basically correct, in general. Although men are supposedly the stoic, strong gender, I have also found, both in my nursing career and life in general, that overall, women tend to be much more tolerant of and stoic about pain. Of course there are whiny women, just as there are very stoic men (my Dad is one of those - he'd walk 5 miles on 2 broken legs, and shrug it off).

I also think that the amount and duration of pain can have multiple factors. Type/length of exercise is part of that. Each of us perceives pain differently, plus no-one really knows enough about the various mutations that create myotonic conditions; heck, there isn't enough known about MC period, for anyone to be able to give much definitive information about it! I think this forum, and our discussions - and the empowerment that gives people to talk more openly and authoritatively with their doctors about it - are doing a lot of good for many people.

I can say with equanimity that the information the doctors gave me when I was diagnosed 5 years ago was mostly ancient, superficial, irrelevant to me, wrong, or just incomplete. I lived with my condition for 54 years, knowing I had something, being acutely aware of what my symptoms were, yet being told that I was making it up. Finding the forum, having Jan for information, feedback, support and resources, and hearing all the stories and histories of fellow members was such a boon - PLUS, it helped give me the confidence to tell my doctors that they did not have complete or current information, and that there were people in the world who knew and understood the condition and its manifestations much better than they did.

Well, I'll stop my little diatribe - I just want to be sure people understand that, with rare and rather vague conditions, doctors often do not have the answers we seek. They are generally going to use readily available literature, and not go much deeper in cases where the outcomes are pretty benign. lois

Type of Myotonia: Myotonia Congenita, Becker's type

Country: USA