Hi, I was glad to find this forum. Many members of my family are affected by MC. It can be traced back only as far as my father, but not doubt someone in his family father or mother also had MC. I am now 61 yrs old. As children we just thought we were from an enormously clumsy family. We have noticed with the women in my family that our symptoms are much much worse when pregnant. I found it so difficult to move that I had to plan where I was going to avoid stairs, etc. I had several very bad falls while pregnant. Yet, I know this problem affects males as well as females, but just wondering if anyone has noticed this seemingly hormonal connection??

It does seem to improve with age. However I am now plagued with Myofacial syndrome in multiple areas, upper back, neck and shoulders and now involving my lower back, Left hip extending down the muscle fibers of my leg to my knees. The Physical Therapist thinks the MC must have a lot to do with it, yet my actual movements are not as stiff as when I was younger. Anyone else have chronic muscular pains?? The stiffness, pain seems to be causing actual changes in the joints, subluxation, some damage in my shoulder tendons, small tears and tendenosis and tendonitis. I now have chronic muscle pain. I'm trying to understand this and if it could be connected to MC.

I have always been quite active and pretty much ignored the muscular problems
I'd tell my closest friends so they'd know why I looked spastic at times, my husband understood the problems of course. My two daughters also have symptoms but far less then I did. I have a relative that is profoundly affected, very stiff with enlarged muscles. Why does MC affect some persons so much more then others??? This may be too many questions in one entry, but I'd like some input on these. THANKS so much, Molly

Type of Myotonia: MC-Thompson's

Country: USA

Hey Molly,
I am so glad you posted about all of this! I have definitely noticed what pregnancy does to MC. It is definitely worse and I really just get by every day between the energy of being a Director of a school, having MC, a mother of an 8-month-old, and almost 7 months pregnant! Being pregnant is hard enough on a woman's body, but especially for ours. Did your stomach get so incredibly tight? It is naturally so tight around the baby, but especially when I sneeze, cough or make a sudden movement from my core, it tightens up and takes forever to release. I was always so worried with my first pregnancy that it was hurting my son, but everything turned out just fine.
I have some questions for you though. I labored for 27 hours and then ended in a c-section with my first. We kind of speculated, but now know that due to my individual symptoms of my MC I never would have been able to deliver naturally. I have my c-section scheduled for my daughter in February and am hoping my recovery is much better without all the hard work of laboring before. I was just curious as to what your story was and how your MC specifically effected your pregnancy, labor, and recovery.
It was so crazy though because I could feel the change as my hormones started to even out again after having my son Maddox. I just did not give myself too much of a break because we had a surprise of being pregnant shortly after. So, I will say it has been extremely difficult with dealing with the harshness of our condition while being pregnant, but also having to keep up with my growing 8-month-old.
I really do find it strange how we can have the same condition but exhibit all types of severity or even different symptoms. I do not really understand how that happens and would think it makes it even harder for people to understand us.
Even after being together for 10 years and married for 4, my MC still throws my husband for a loop. He still often battles with my capabilities and often thinks I can just "push through it" more than I do. I think that is the hardest part of all this...just needing the support in understanding.
Sorry I went it many different directions, but I definitely can relate to your post and wanted to respond!

Country: United States

Molly:

Certain hormones are known to make MC worse, as is pregnancy, especially in some mutations. How the disorder expresses over time seems to vary from person to person, but some people I have conversed with seem to struggle more as they age even if the myotonia part of the disorder lessens. I think one reason this is, is the disorder wears on people, maybe in a similar fashion to how certain sports wear down athletes, like body building, wrestling and gymnastics.

While the myotonia part of my MC has lessened considerably with age, I've developed far more problems with weakness/stamina/muscles fatigue, and pain/burning.

Both of my mutations are overlapping recessive/dominant, and while I'm the only one in my family with full on myotonia, and who has a diagnosis, I think my mother is also affected on occasion. She has had her calves/toes lock up on occasion, and she once confided that when she was younger, her stomach muscles would "sometimes lock up and take a few seconds to relax" after she coughed. She had struggled with muscle pain, especially in her back, for the past few years and has a diagnoses of fibromyalgia, but I think maybe it is an atypical symptom of MC.

I have hip problems which I think are due, in part (but not entirely) to the MC. I do think it can cause the joints to wear abnormally in some situations.

Type of Myotonia: Becker

Country: USA

Hi Molly and Jenna,
I have Becker's myotonia and am now 56 years old. Definitely in my case there is a hormonal effect. At puberty I noticed my symptoms were worse in the second half of the menstrual cycle. Since menopause my symptoms have worsened again, and I now have to take mexiletine hydrochloride. Previously I didn't really let my myotonia stop me doing anything as it was fairly mild. By taking the mexiletine I can get back to that state. I only take a very low dose, 50mg twice a day, mixed up by a compounding chemist.
I know what you mean about husbands, but I guess unless they can feel it they're not going to understand. I found giving my husband an article written by a doctor with myotonia changed his perspective a lot. My labours were long and slow, but contractions were 2 mins apart right from the start. Not sure if this was relevant.

Type of Myotonia: Beckers

Country: Australia

Relieving the tension helps return joints to normal mobility.

Yup, subluxation here, too--my shoulders subluxate sometimes, and my hips get pulled out of joint when I'm pregnant by muscle cramps.

A GOOD deep-tissue massage therapist can make all those muscles relax, and a good exercise program can keep them that way so that you only need the therapist once a month or so. This protects joints form injury. MC isn't progressive, but joint damage can be!

And apparently, pregnancy make MC worse in pretty much everyone. Wheee. But it gets better after.

Type of Myotonia: Thomsen's

Country: USA