Return to Website

Myotonia Congenita Forum

 

This forum has been closed for comments.  You can still search archived messages.

 

Visit  the Non-Dystrophic Myotonias  Facebook Group

Myotonia Congenita Forum
Start a New Topic 
Author
Comment
Changing symptoms

Hi,
I have been on this site once before and everyone was so helpful and I felt not so much by myself, so here I am back as my conditions has changed. I was told at 17 I had myotonia congenita and have been on Dilantin for almost 20 years. Here's the thing, my legs were the main problem, but very gradually my back has been giving serious trouble, a few hospital stays later always in winter and this last year it has done a total change. I have pain when I breathe, I have pain during eating, the pain is crazy sore!! I have been in hospital 4times since sept and the neurologists have given me every test you can think of and then some. I have been passed onto another neurologists who has other patients with myotonia, I have trial mexitil which is super expensive here but made me so so sick. I am now on fleccanide and Dilantin both, but it has only dulled the pain. I have had my blood sent off for the genetic thing, but that will take time. I now cannot be in a room with air conditioning ( not good on a 36 deg day in melb). I also can't have a fan blow on me, winter cold kills me, summer heat hurts. I feel like a weather vane of pain. If the weather changes I can feel it before I get up. What boggles my brain is that the symptoms have changes dramatically , can a disease move to different parts of your body?. Does anyone know of something that may help the pain?. School starts again by soon I need to be more mobile, I got to go back to work!!!! I just walk about hunched over puffing and panting, like some seriously old sick person.......I am only 37! I have three kids under 9. My life cannot just stop and rest all of the time! On a good note I walked up a flight of stairs without any prep (I was alone so no one to see the stiffness) and I did it in one go!! I stopped at the top truly amazed- this is what it feels like for everyone else!!! How cool!!! I may be sad and depressed about what is happening with me right now but I can see and do appreciate the little gifts when they come my way!

Type of Myotonia: ???

Country: Australia

Re: Changing symptoms

Sam,

Myotonia won't cause the back pain, but if you have an injury or inflammation of nerves in the spine, muscles will go into spasms to try to guard the nerve, and the myotonia in those muscles can get worse because they are constantly firing.

Have you had an MRI? It will show disc herniations or bulging and narrowing of the spine, but if it is just inflammation then you still won't see anything. Sometimes a spinal tap will detect a viral infection that can be causing pain.

I get regular chiropractic adjustments which help (I have a lesion in my spine and also several herniated discs). Ibuprofen seems to be the best painkiller for that type of pain. I also use an amino acid called L-Histidine for inflammation. Many people get relief from acupuncture. My doctor recommended a topical capsaicin product. That does seem to help, too.

Hope you get some answers. You may have paramyotonia congenita, so hopefully the test will check both the chloride and sodium ion channels.

Jan

Type of Myotonia: Thomsen's

Country: USA

Re: Changing symptoms

Hi Sam:

I have Becker MC and used to have the most trouble in my legs, though full body myotonia in my late teens. As I got older, especially after I lost weight, the myotonia began to lessen, but I started to have more problems with weakness, lack of stamina, burning, and fatigue in my upper body. I also started to develop painful cramping in my upper back. When I was in my 20's, at college, I thought it might be fun to be a professor, but I worried I didn't have the upper body stamina to stand up there and write on the board with my arms up for an hour or two.

When I drove more, my limit for being in the driver's seat was about two hours. My torso muscles would fatigue to the point of burning, and my upper back muscles would cramp and burn.

I've also developed stamina issues with my hands, and an occasional tremor which I think is due to muscle fatigue.

I feel that the potassium in coffee yogurt (over 400mg) sometimes help the burning and cramping in my back, but as you are not genetically typed yet, you should be aware that people with myotonia due to mutations on the skeletal muscle sodium channel gene, SCN4A, such as paramyotonia and potassium aggravated myotonia, often see their myotonia worsen with potassium intake. A few people on here with Thomsen and maybe Becker MC, which is due to mutations on the human skeletal muscle chloride channel gene, CLCN1, have reported that they feel potassium worsens their symptoms as well. It can be trial and error.

Recently the stamina in my torso has improved. I managed to make dinner and do dishes a while back without developing serious muscle fatigue, something I haven't been able to do since I was maybe 12. I don't know if this has anything to do with it, but I've been going to the gym and doing some core body exercises such as side plank, plank, and wheelburrow, and I've been getting more iron in my diet, in the form of dark turkey meat and very occasional iron supplementation as I was slightly anemic and iron deficient. I also reduced my caffeine intake and have been reclining a lot more, and sleeping longer, partially to rest my muscles.

I've basically just had to accept that muscles are indeed not normal, and fatigue easier, and need more down time than normal muscles.

There is also a myotonias group on facebook that is fairly active if you want more people to talk to.

Type of Myotonia: Becker

Country: USA