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Hi all, I have suffered with this condition all my life. Reading the comments its all so familiar. I was diagnosed by accident after complaining about it for all my life the Dr's would give me cream to rub on my muscles, I gave up complaining around 13 years old. At 25 I went to a Dr and she looked at my physique and wondered if I did training I said no, she sent me of for tests and the rest is History.
I have tried Yoga, helps somewhat but for me its about discipline (not enough of it, even though I love it). But just last week I came across the 'Inclined Bed Therapy) https://www.youtube.com/watch?v=x68PLE8MXJE
I was trying it out for other reasons as I am into health, auricular acupuncture, Physiotherapy, and acute homeopathy. I was quite startled at after 3 days I noticed that the cramping was not as bad. The initiation of the stiffness and the duration of the stiffness. It has not elevated the CM altogether but the other day I jumped repeatedly over a 10 inch box (doesn't sound like a lot but to CM person ha) and I was able to land and recoil better and more consistently than I have for a while. I suppose this was anaerobic function short strong movements.
However I have found that my lower body is more relaxed but my torso and arms still feel stiff. Also in my lower limbs the muscles are more relaxed proximally, i.e. in the femur from the hip down to 3/4 of the way is very relaxed, the last quarter or end of a range movement is still stiff, although better than before. And from my tibia 3/4 way down relaxed but ankle and below calcaneal tendon stiff but better than before.
If anyone wants to try the above therapy let me know how it goes, fingers crossed this isn't placebo ( iwasnt trying it for my stiffness) or just a flukey short term one of occurrence...
Type of Myotonia: Congenital Myotonia
I used to sleep at an incline due to GERD/hiatal hernia, and stuffy nose problems, but this seemed to really tax my weak torso muscles...I guess they couldn't really relax completely in that position, or maybe didn't get enough blood flow to them at night because my blood pressure is low as it is and probably drops to "dead" when I'm alseep, but the end result was, they stopped working around 4pm and I would spend the evening stuck on my back with burning muscles because I literally did not have the strength to sit up.
Congrats on the box jump! I don't think I'm particularly capable of that task even when my myotonia is mild. I remember in Jr. High for P.E. once, they had us stand at a white line and then see how far we could jump from a standing start. The only thing I could think while waiting for my turn was "God I'm going to look stupid".
At the gym they have these wooden boxes of varying heights that people jump on from a standing start. Some of them are more than three feet high, and some of the guys can jump up on them. It's so alien to my physical capabilities that it just amazes me every time.
Type of Myotonia: Becker
Hi Jenna, poor circulation is suppose to be the good thing about this therapy it improves all circulation. At the beginning of the video he explains how lying inclined improves circulation. He also mentions that it's not like a hospital bed whereby you incline the top half/torso and leave the lower limbs still straight, you actually incline the whole bed from the floor/casters so you are sleeping flat but on an incline and he has found it helps BP.
As I stated I have just come across it and I am shocked at the difference it has made in my legs.
Type of Myotonia: CM
That's a really interesting interview. I have done this for many years, but I started because I had heart failure and the tilt really helped.
I suspect the effect for myotonia is somewhat related to steroid hormone production. The adrenals produce different amounts in different positions, so something at a different angle that completely horizontal may change the steroid production which in turn would alter potassium balance and reduce myotonia.
Hope it continues to give you good results!
Type of Myotonia: Thomsen's