Gord,

Sleep apnea is not associated with myotonia congenita, but central sleep apnea is very common in myotonic muscular dystrophy and can cause respiratory failure.

While sleep apnea is fairly common in the general population (primarily obstructive apnea) our diaphragms are affected by myotonia and I think the sudden bursts of adrenaline associated with apnea can make it feel like you can't take a deep breath.

Were you given a CPAP machine? I had to wear a mask for a sleep study and it was tough. But the new nasal pillows look a lot more tolerable.

If you were diagnosed that long ago, you might want to consider getting a DNA test if you haven't already done so. Much has changed even in the last decade and it's good to know exactly which type of myotonia you have.

Jan

Type of Myotonia: Thomsen's

Country: USA

Thanks Jan. I knew there was no association between sleep apnea and myotonia - I was thinking more in terms of the muscle pain and discomfort that goes along with lack of quality sleep, which I suspect is increased by the myotonia. Anyone noticed a relationship between extreme fatigue and myotonia symptoms?

Type of Myotonia: Thomsens

Country: Canada

Gord,

You might want to read this article...it refers more to muscle pain like fibromyalgia, but talks about how lack of sleep from apnea can exacerbate symptoms.

Pain and Sleep, National Sleep Foundation

Jan

Type of Myotonia: Thomsen's

Country: USA

Hi Jan,

Thanks a million for the link ... very interesting. I wonder if it's possible to have both Myotonia (mine's DNA tested) and fibromyalgia?

Type of Myotonia: Thomsens

Country: Canada

Gord,

I think it's very possible to have both. One of the causes of fibromyalgia is repetitive injuries. When you consider that with myotonia we injure our own muscles on a daily basis all our lives, it's no surprise that we could develop the symptoms.

It seems to be a decreased tolerance for pain - the brain interprets pain signals at a much higher intensity. There seems to be no actual muscle inflammation or disease process, and it doesn't cause any damage to joints. But it can be incredibly painful and debilitating, and poor sleep is almost always associated with FM.

Usually fibromyalgia is diagnosed by rheumatologists. For years they thought it was psychosomatic but recent research has shown it is a very real condition that does respond to medications that target nerves.

One of my daughters has both MC and fibromyalgia and is in a wheelchair much of the time. I have no fibromyalgia even though I have the same genetic mutation and degree of myotonia. Many other factors seem to influence the onset.

Jan

Type of Myotonia: Thomsen's

Country: USA

Jan,

Sorry for not getting back sooner. Thanks so much for the reply and the information. Certainly will be something I'll be looking into.

Gord

Type of Myotonia: Thomsens

Country: Canada