Thursday, April 5, 2018

Living with Muscular Dystrophy & dealing with fatigue

Over the last few years I have been struggling with low energy and it has been affecting my life in negative ways. Lately I have been feeling a lot of muscle pain which tends to make me a little anxious, especially when I am having pains in my chest. I guess that these muscle pains are just a part of living with Muscular Dystrophy. Most times when I am having these chest pains I jump to the conclusion there's something wrong. But I have already had an in-depth heart check up which included an echo-cardiogram. At my follow up appointment I was told everything looks great so I really have no reason to be concerned.

Still most days I feel sluggish and tired and even off balance at times. Sometime when I am standing I wish I could sit down, sometimes I feel so tired I even wish I could lay down and take a nap. Maybe part of the problem is that I am not getting a proper night's sleep. Now I do have sleep apnea and use a CPAP machine every night but I shouldn't feel this way. Maybe it's due to the fact that I am unable to stretch out as much as I would like. 

Being married I am sure other couples who sleep in a queen size bed understands that space is limited. That is why I would prefer a King size bed but unfortunately I live in a very old apartment building with very small bedrooms. So I make due but it does seem to play a role in me feeling tired most of the time. I guess there are a lot of other things that could be causing all the tiredness. After all it is important for those of us with Muscular Dystrophy to get a good night sleep as it allows our muscles to recuperate. As we all know that is the whole point in sleep is for us to rest our bodies so we have the energy to face another day. 


Now I have been to the doctor many times had blood work completed and everything comes back just fine. I have come to the conclusion that maybe I have low testosterone. The one thing that is holding me back from getting it checked is the $40 fee I would to pay for this blood test. A real waste of money if they come back and say that it's perfectly fine as well. So is this a part of living with Muscular Dystrophy? After all fatigue is a major part of Muscular Dystrophy.


So I have started taking vitamins but they are only good for maintaining health. Then you have those out there selling a cure for Muscular Dystrophy, but it seems they are more interested in selling you products in order to create a source of income for themselves. Sure there are many things out there that can make you feel better but I wouldn't call them cures. If feeling tired all the time is a part of living with Muscular Dystrophy then I guess I just have to accept it. Now if you are living with Becker's Muscular Dystrophy and a lot of this sounds familiar, please feel free to share some tips as I believe that others living with the same condition can always provide each other with the best advice.