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 negatives 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. But 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 nights 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. I really want to find out what the problem is. 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 them selves. 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.    

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  1. Hi Brad

    I know where you are coming from regarding tiredness and low energy. A couple of weeks back I was experiencing a period of tiredness and lack of energy resulting in balance becoming worse and a couple of falls (no injuries!). When my balance is bad I find myself having to touch walls when walking just to keep me balanced. As you know, if we fall, getting up is a major issue! This week I feel much better and I put that down to plenty of 10pm bed times. This seems to have done the trick and feel pretty good this week. I find having a full time job quite tiring but have to do it as I have a mortgage to pay. I get up around 7.15am each day for work, sometimes I have a short sleep when I get back from work at 4.00pm which helps.

    When I take a week of leave from work I find that really helps recharge the batteries for a good while. I put this down to being able to have plenty of lay-ins, lots of rest, relaxing watching a film each afternoon, video gaming etc. So better to take a whole week rather than lots of individual days here and there.

    I find when I’ve done physical work that can have an adverse effect on me but unfortunately sometimes things have to be done. I’ve bought a house that needs decorating and cannot avoid it. The trick is not to over-do it – a couple of hours a day is a good amount to aim for.

    I don’t know what you can do with your neighbours upstairs, maybe worth speaking to them and explaining your issues. I have a similar problem on and off with my neighbours. I need absolute silence when going to sleep. Ear plugs may help to drown noises out or an eye mask to keep the light out as having a very dark room does help. Having a king size bed is great as I need to be stretched out when sleeping; I don’t like being bunched up.

    Another thing that I find helps in some way with tiredness is eating the right foods – lots of fresh vegetables / fruit and no processed stuff and laying off the alcohol. Eating the right stuff also helps with weight loss (currently 11st 4lb [158lb] as I’ve been on a bit of a diet for the last week) and as you know being lighter helps when getting up from chairs etc.

    Regarding your pains around the heart/chest, I used to suffer from these too and they can be pretty scary but they seem to disappear a couple of years back. I think they are linked in some way to anxiety/stress. Everything is good in life so very calm at the moment. I see a cardiologist every year and each year the results come back saying there is no significant deterioration of my heart – which is always good news. I also have a lung function test once a year – again, all good.

    Anyway that’s all for now Brad, I hope my comments help in some way. Steve, Grimsby, UK

    1. Hi Steve, great to hear from you thank you for all the great advice, I have recently being doing my best to go to sleep the same time every night. Then also get up at the same time every morning. It has helped.

      I do wish the neighbors above were more considerate, unfortunately they aren't the friendliest people so it would be very hard to address the issue with them. Seems a move is a good idea but unfortunately funds are tight. Hoping for s miracle or some sort. Really wish I had a King size bed going to have to start saving up I guess.

      I totally agree about eating the right foods, a few year back I cut out sugary beverages, started eating more veggies and reduced salt intake. Limit processed food as best as I can. Have done my best to reduce gluten intake as well. You are right when you say being lighter helps when getting up.

      Thankfully lately I have been doing my best to remind myself that my heart is ok and that the pains in my arm and chest are just muscle pains. My cardiologist say not issues with my heart so I shouldn't be concerned. Great to hear your results are good as well.

      Again that you for sharing all this great advice with me, very thankful for that.

      Please keep in touch,