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Re: I am Confused...

Keith,

I dont have any pain, per se its just difficult to move, run up stairs etc. I too wonder where the pain examples arise. I am sometimes very achey after excercise but I guess most people are especially when they get older.. ps I'm not that old.. only 48.

Hope this helps clarify things..

Kev

Country: UK

Re: I am Confused...

actually I am wrong... the pain comes when I bang my head on the floor after 'planking'

Country: UK

Re: I am Confused...

Thanks Kev. Has your condition worsened any as you moved on in age? 48 is NOT OLD. Im 48 also. Remember old is ALWAYS 20 years older than you are.

Country: usa

Re: I am Confused...

I dont think it worsened per se. I think there is a relationship between my weight and mobility and not just the same relationship as for people without MC.

I still manage to work (Environmental Research), play (table tennis to a fairly high level) and enjoy myself (few beers occassionally) so enjoy pretty good quality of life.

Hope this is encouraging.

Kev

Country: UK

Re: I am Confused...

Kev,

I enjoyed table tennis except when someone wanted to play "Round Robin." Then I'd end up banging into everything :-)

Jan

Type of Myotonia: Thomsen's MC

Country: US

Re: I am Confused...

As long as I am 'warmed up' there are no problems... though I did hit the deck once going for a shot when I wasnt properly warmed

Country: UK

Re: I am Confused...

Keith,

I never had any pain with the MC, either. I've had discomfort from torn muscles if I push too hard against the stiffness just like you would if you lifted too much (think of how you feel after a move).

My myotonia has actually improved but only if I am strict about no sugar and potassium additives or high-potassium foods. Over the years as I have experienced injuries from accidents and after getting nerve damage from a viral infection I do feel a lot of pain which may seem like it's somehow connected with the MC, but I think that's more from the muscles trying to guard the injured area and they tend to keep contracted which makes the nerve pain worse.

Pain is so subjective that it's hard to quantify it related to a condition like this. What may seem like an annoyance for one person may be interpreted as unrelenting pain by another. And it's certainly true that even something like magnesium depletion in the muscles or lack of sleep can cause a heightened sense of pain.

Over time we tend to find our own ways of coping with whatever discomfort we feel with this disorder. It may be anti-seizure meds which help relax the muscles, diet, stretching or heat, antidepressants, or painkillers. There are so many variables that enter into the picture that no one approach will be effective for everyone.

It's great that your son isn't feeling pain (or at least not to the degree that he is communicating it). If you know the constant tension and pulling and even cramping is a normal part of the condition, then I think it's easier to deal with it. Once it starts interfering with sleep or quality of life, then it's worth asking the health care providers for help in choosing the best treatment.

Jan

Type of Myotonia: Thomsen's MC

Country: US

Re: I am Confused...

When I was younger I didn't have pain except when the cramps would become unrelenting. And this was thought of as fairly normal in my family nearly every female in my mothers family has promplems with muscle cramps and stiffness to some exstreme.I'm the only one to be diagnosed with MC. I would get very bad leg aches at night when I had played hard during the day, Mama just said I had growing pains. She thought it was normal because that is how she did as a child. The past 5-10 years I've started having bad muscle pain I have 2 herniated disc in my spine but I also have diverse muscle pain. I was beginning to believe maybe I have fibromyalgia. but since reading post here I wonder. Do ya'll think that maybe that Lyrica would help the MC pain?

Type of Myotonia: unknown

Country: USA

Re: I am Confused...

Keith:

As I understand it so far...

there are over 80...possibly over 100 mutations on the CLCN1 gene which cause myotonia. Different mutations can affect the functioning of the muscle in slightly different ways. Some mutations shift what is called the "voltage dependence of open probability" greatly, and some mutations barely shift it at all. These shifts can be to the right or left In laymens terms, the skeletal muscle chloride channels in some people with myotonia congenita require more positive voltage to reach the same probability of being open, than someone without it, and some people with myotonia congenita require more negative voltage to reach the same probability of being open as someone without it.

If I understand correctly (I'm not a geneticist or biologist or doctor), some mutations produce proteins critical to muscle function, which aren't stable, while some mutations produce stable proteins but the protein transport mechanism, to get the protein where it needs to go, doesn't work very well.

The end result of this is a very large degree in variability of clinical manifestation of myotonia congenita. There is also a lot of variability in the symptoms of those with the same mutation. I'm guessing this is just because myotonia tends to be so sensitive to environmental factors and we each have slightly different environments within our own body.

I think some mutations are more likely to cause pain and weakness than others. Some people here seem to have very painful cramps, while I only get the occasional truly painful myotonic cramp in my calves, but I do feel mildly achy a lot regardless of the severity of the myotonia, and I tend to get discomfort when my muscles get fatigued. I didn't really start feeling quite so much so until I was about 15 maybe, so it couldn't be age, and it's not my bed.

Type of Myotonia: Becker

Re: I am Confused...

I guess I never thought that I had any pain until recently. Since, I've had MC as long as I can remember, I can't really compare how my muscles feel when they contract to how the rest of the human population feels when their muscles contract.

All I know is that when I do anything physical that requires my muscles to contract to a degree that they lock up, I feel a pain caused by the intense contraction of the muscles. This is usually accompanied by an immediate shortness of breath or exhaustion.

When my muscles are in a more warmed up state or I move them in ways that don't cause them to contract as much, I don't feel that same painful sensation.
The reason why I have begun to associate the intense contraction as pain is because I have realized that the feeling is uncomfortable enough to irritate me
and even enough to upset me at times.

Type of Myotonia: Thomsen's

Country: US

Re: I am Confused...

One thing to remember is we are not normal. We have lived with this all our life. So we accept the pain as being normal.

Type of Myotonia: Thomsens

Country: USA

Re: I am Confused...

Thank you all for your help. I dont believe my son has an extremely bad case, He plays hockey, basketball, and other sports but cant move like everybody else after , lets say , a 3 minute break. Sometimes he works it out snd is OK. Sometimes not so good. Its mostly in the sports where he gets frustrated. I am always looking for things that MAY ease up some of the symptoms (at least for an hour or two).

Again Thank you All for helping.

Keith

Country: USA

Re: I am Confused...

Hi All,
I could not understand that EVERYONE didn't have pain. That was my biggest complain about the myotonia. I have extreme pain in the shoulders and thigh area. Just lately, I have been getting alot of pain in my hands. Sometimes my feet are so sore, in the a.m., that I can barely walk.
So, I am guessing that it's an individual thing. Or, it could be that I also have fibromyalgia. I have never been checked for that. I just assumed it was the mc.

Type of Myotonia: beckers

Country: us

Re: I am Confused...

Sue,

Maybe you can get in to see a rheumatologist and tell the doctor you definitely have something going on that is not related to MC. Don't stop till you get an answer because what you're experiencing is not typical. If you can catch other conditions early on you usually have a better chance of keeping them from progressing or at least slowing down the progression.

Jan

Type of Myotonia: Thomsen's MC

Country: US

Re: I am Confused...

Hi Jan, Actually I have an appt. with a rheumatologist in January for a high thyroid level. I think they sai hyper not hypo. It is hard to tell what is "normal" and what is not. I guess I just assume everything odd is "normal" for me.

Type of Myotonia: beckers

Country: us

Re: I am Confused...

Sue,

Usually an endocrinologist would deal with thyroid issues although there is a strong correlation with hypothyroidism and fibromyalgia.

Having low thyroid also makes myotonia much worse and can cause a lot of muscle pain. If I miss just one dose I feel it - I'm very stiff by the next day.

The test that's usually done on comprehensive panels to check the thyroid is TSH, or thyroid stimulating hormone. If this is high, that means your body isn't producing enough thyroid and the pituitary is trying to signal for more. Maybe this is what your doctor meant about it being high - perhaps the TSH was elevated.

If you have hyperthyroidism you will have lower potassium levels, rapid pulse, and weakness. It can be related to an autoiummune disease and the sooner it is treated the better. You might want to get a copy of your lab work just to see what is actually elevated. It could make a huge difference in how you feel.

Jan

Type of Myotonia: Thomsen's MC

Country: US

Re: I am Confused...

I can sort of remember 15.

Pain wise, I remember that at the time it was fairly severe, more to the point, that muscle cramps hurt. But I also seem to recall developing a high level of tolerance to pain while being a teenager.

Most teens are clumsy at that age to begin with, while 15 is on the down slope of that time frame, it still can happen. I remember standing up from the lazy boy at that age after watching TV, and falling flat on my knees on a hardwood floor. It hurt like a son of a ..... but it did not really register. I just waited a few seconds and pulled myself up.

But, here is my point. At 15 the psychological pain is probably worse than the physical. I grew up in a slightly different time, at 34, I was in that age group in the late 80's and early 90's. My perception of kids now is that they are more cruel than they used to be. When I got into highschool, people stopped making fun of me and started being concerned if I tripped or fell. That may be small town thing though.

While the physical pain may be manageable, the silence may be a sign of more of a psychological impass. It is hard enough to talk to a teenager that is physically healthy, but now that is compounded by the fact that he is dealing with a disability that most people do not understand.

One of the main things I have found to be a major part of dealing with MC is how you feel mentally. Trying to maintain a positive attitude is tough sometimes, but it seems that when I am happy and not stressed out, I move better and feel better. Second to that is weight, the less you carry the easier it is to move around, then diet and medications.

I hope this helps a little. For me, my parents encouraged me to do things I enjoyed and was good at to keep my focus. One was drawing the other was music. When I was stressed I found comfort in those things. I could do both with no physical issues. So it allowed for more successes than other options.

Country: USA