So, I have been feeling really tired for a long time and have had a loss of energy. I got some blood work done and found I was Vitamin D deficient. I have been taking these vitamins for a couple weeks now, and will soon go in to see if my Vitamin D levels are sufficient. However, I still feel tired as a write to you now. I do admit, the last few years I have been more tired during the winter months, (I Live in Minnesota), so perhaps I might have SAD.

Anyways, my question is do any of you deal with tiredness or low energy levels do to your MC?


Ethan

Type of Myotonia: Becker's

Country: USA

Ethan, I also have Becker's type. I feel fatigued often. And, I also have low Vit D levels. It's been awhile since I have been to my Doctor to have my levels checked. But, they are often very low. He perscribes me a high dose of Vit D that I take only once a week for three months. It seems to help very little. I also live in a very northern state. The Upper Peninsula of MI. But, I love the winter months and the snow. Although, it does not agree with my MC of course. Much more stiffness. I think we just have a great deal of fatigue with MC. I do hope you feel better soon. Let me know is you find something that really helps.

-Tammy

Type of Myotonia: Becker's MC

Country: USA

Ethan,
I have battled fatigue for a long time. I think, however, when we tell doctors we are tired all the time, it is misleading for them, which is why I was not diagnosed sooner. I believe we mistake weakness for fatigue. The inability to lift my arms above my head for long periods of time is probably better classified as weakness. When I was younger I often said that I felt like all my blood had been drained from my body. I guess that was an appropriate description, since losing blood would cause one to feel weak.

It really helps when I follow Jan's diet recommendations and avoid sugar. I find I have much more energy. Around the holidays, I notice my weakness increases. Besides all the holiday sweet goodies I have trouble avoiding, there are increased levels of stress which affect everyone, but I believe it affects those of us with MC much more.

I believe Jan mentions on the forum about light boxes to help with the SAD. Minnesota has to be tough in the winter!

Mary

Type of Myotonia: Thomsens

Country: USA

I was just diagnosed yesterday but have been suffering for over 3 decades. My doctor has been very wonderful in believing this wasn't all in my head or fibromyalgia, which was the diagnosis I've had to deal with for years whenever I go see a new physician. We did lots of testing - I've had 4 EMGs, nerve and muscle biopsies, and lots of blood tests, but everything showed basically normal (I do have some minor neuropathy now). I'd go to the neurologist, who would say I needed to see a rheumatalogist, who would tell me to go back to the neurologist. I finally gave up for awhile and just suffered. It wasn't until my daughter started having some of the same issues that my doctor suggested I do genetic testing to see if we could figure it out. I have suffered a lot with 'tiredness', but I have to agree that maybe it was more weakness. I can remember getting out of the pool after swimming and feeling like a rag doll in my twenties. Exercise makes me weaker, too, so I have to be careful with how much I exercise. I think it caused me to start doing less so I didn't have to deal with the pain. I did start on Lyrica a year ago and found out I had low magnesium and B-12 caused from using PPIs (Prilosec and Nexxium) for years for GERD. Once I quit taking them and started supplementing the magnesium and B-12 I began to feel a bit better and have been slowing working at getting more exercise. Needless to say, too much at once causes severe muscle cramping! I'm glad to have found this forum. I have a lot to learn!

Type of Myotonia: Unsure - Just diagnosed

Country: United States

My muscle stamina is below average so I manage my time and energy a little differently from most people. But if you are suddenly feeling more tired than usual, and you have low vitamin D levels, I would have your thyroid and iron levels checked too.

Vitamin D helps your body utilize thyroid hormone, and for some reason, low vitamin D levels, thyroid problems, and low iron levels seem to go hand in hand.

A few years ago, I started to feel more runned down than usual to the point where I would literally just sit there and not do anything, and it turns out I had iron deficiency anemia. I didn't realize how bad I had actually felt until after two weeks of iron supplements and I felt much better. Iron supplements shouldn't be started without confirmation of a deficiency though because it's easy to overdose.

Type of Myotonia: Becker

Country: USA