At first I just noticed some stiffness, mostly in my legs and hands, and some achiness, mostly in my hips and arms. I noticed that following a walk or some other form of activity the stiffness was lessened and the achiness went away for the most part. As time has gone on and I have aged I've noticed the disease becoming more of a burden. Stairs are hard to climb, because my muscles are stiff and can't relax as quickly as I need them to in order to do stairs without pausing. My hands will lock up around a cooking utensil or a pen and I will have to manually straighten my fingers with my other hand. It is also painful. Imagine walking around tense all the time. A lot of us naturally carry stress in our shoulders or neck area, and after a while it becomes painful - it's like that all the time with this disease, but not just in the shoulders and neck. My jaws become tight and painful which can often lead to migraine headaches....
Sometimes people ask what I mean by stiffness. You know how you try to pour molasses or honey out of a jar and it's slow moving? That's what it feels like with my muscles - I want them to move without problems, but my disease often makes them slow like molasses or honey. When I go up stairs I have to stop and wait when my legs are stiff, otherwise I will trip. After standing up, I have to stand still for a minute before I try to move. I have to give my muscles time to recover and get ready for the next movement I ask of them. These pauses are only noticeable by those who know what I struggle with and how it affects me, but I suspect that as I age and as my disease progresses the pauses will be longer and more noticeable to others around me.
Cold temperatures aggravate my condition. When people feel cold they tend to draw their body in on itself in an effort to help generate more body heat. When I draw my arms closer to my chest my shoulders and neck scrunch together as well. That scrunching will make me tense and the cold makes my muscles more tense. Most of the time I don't even notice when I'm doing this. Since my natural resting state is somewhat tense already, feeling even a little bit cold will make me scrunch and then become even more tense. I like to dress with the seasons, but I tend to overdress in the winter or just wear the warmest sweats I can find and try not to leave the house. A person's muscles can become so tense that it can lead to inflammation of the muscles, which is much more painful than just the tense muscles themselves. So I try to dress warmly and stay home when possible.
A frequent question I get is, "is there any medication that can help you relax and/or keep your muscles relaxed?" The only thing I'm aware of are muscle relaxants. I tried a muscle relaxant once just before I was diagnosed - it worked for about 2 hours and it was hard for me to function because my muscles felt so different than they typically do. I couldn't tell if my legs were where I needed them to be to navigate stairs. From what I understand, the muscle relaxant I took was supposed to work for at least six hours. It only worked for me for 2. Muscle relaxants can also be habit forming. I've decided that for me the risk is much greater than the payoff.
Another question I get is how do I manage to keep the pain at a tolerable level. Most of the time my very patient and understanding husband will give me massages where I need it the most (usually my shoulders, neck and jaws). The massaging can help work out a lot of the tension that was accrued that day from just doing my daily thing and nothing strenuous. The remaining tension builds up over time and my muscles become inflamed. At that point when I do receive massages it becomes more harmful than beneficial, and it's so painful that I tense up in other areas during the massage. On those occasions I will take two ibuprofen to take the inflammation down. After the inflammation has decreased massages are more effective in getting my muscles to relax. I don't like taking ibuprofen frequently since I am concerned that my body could develop an immunity to it and it would lose its efficacy over time. I do take fish oil (which is high in Omega-3 fatty acids) twice a day, which seems to help to control the inflammation levels. I've tried going without for a few days as an experiment, and I hurt throughout my body (not just my typical trouble spots) in two days. Fish oil seems to make a difference for me and I will continue using natural supplements to help me manage.
Exercise is another way to help keep the pain at bay. I have to find moderate, low impact exercise for it to be helpful. I walk two miles every day to help keep my strength up and to keep my muscles moving. Muscles that don't move will build up lactic acid and lead to inflammation. If I exercise too much or do something too strenuous then I overtax my muscles and make them tense. When that happens I often have to take one or two days "off". I don't exercise on those days and try to relax on the couch as much as possible. But too much of taking it easy leads to achiness from not using my muscles. It's a fine balance. I used to lift light weights to help maintain my strength, but I noticed that my muscles became inflamed much quicker than when I wasn't lifting. Walking and swimming are low impact, but are great for maintaining strength.
Over time I did notice one thing that consisently seemed to make my muscles come to the point of inflammation rather quickly - sugar. Whenever I had desserts with quite a bit of sugar in them, within about two days my muscles would become inflamed and the only thing that would really help would be ibuprofen. After thinking about why sugar might have such an effect, I realized that my muscles aren't normal and they therefore don't absorb and process glucose the way most muscles do. People with Myotonic Muscular Dystrophies of any sort are at a higher risk to develop diabetes Type 2 because their muscles can't handle glucose very well. After cutting sugar (white, brown) out of my diet, I have felt better and my muscles don't tense up as quickly as they used to.
Muscular dystrophies tend to make a person more fatigued than the typical individual. From what I can gather the doctors aren't sure why that is. I have noticed that no matter how well I sleep the night before, I still feel quite tired the next day. Being tired is a part of my everyday life; there are different levels to the fatigue, but it's always there. I have learned to work through it. I will often just stop everything and rest my body for about 30 minutes with my eyes closed - most of the time I don't fall sleep, but I still feel somewhat refreshed after resting. I do need to get at least 8 hours of sleep at night, otherwise I really struggle the next day. If I didn't sleep well or enough I tend to tense up rather easily.
Cold temperatures aggravate my condition. When people feel cold they tend to draw their body in on itself in an effort to help generate more body heat. When I draw my arms closer to my chest my shoulders and neck scrunch together as well. That scrunching will make me tense and the cold makes my muscles more tense. Most of the time I don't even notice when I'm doing this. Since my natural resting state is somewhat tense already, feeling even a little bit cold will make me scrunch and then become even more tense. I like to dress with the seasons, but I tend to overdress in the winter or just wear the warmest sweats I can find and try not to leave the house. A person's muscles can become so tense that it can lead to inflammation of the muscles, which is much more painful than just the tense muscles themselves. So I try to dress warmly and stay home when possible.
A frequent question I get is, "is there any medication that can help you relax and/or keep your muscles relaxed?" The only thing I'm aware of are muscle relaxants. I tried a muscle relaxant once just before I was diagnosed - it worked for about 2 hours and it was hard for me to function because my muscles felt so different than they typically do. I couldn't tell if my legs were where I needed them to be to navigate stairs. From what I understand, the muscle relaxant I took was supposed to work for at least six hours. It only worked for me for 2. Muscle relaxants can also be habit forming. I've decided that for me the risk is much greater than the payoff.
Another question I get is how do I manage to keep the pain at a tolerable level. Most of the time my very patient and understanding husband will give me massages where I need it the most (usually my shoulders, neck and jaws). The massaging can help work out a lot of the tension that was accrued that day from just doing my daily thing and nothing strenuous. The remaining tension builds up over time and my muscles become inflamed. At that point when I do receive massages it becomes more harmful than beneficial, and it's so painful that I tense up in other areas during the massage. On those occasions I will take two ibuprofen to take the inflammation down. After the inflammation has decreased massages are more effective in getting my muscles to relax. I don't like taking ibuprofen frequently since I am concerned that my body could develop an immunity to it and it would lose its efficacy over time. I do take fish oil (which is high in Omega-3 fatty acids) twice a day, which seems to help to control the inflammation levels. I've tried going without for a few days as an experiment, and I hurt throughout my body (not just my typical trouble spots) in two days. Fish oil seems to make a difference for me and I will continue using natural supplements to help me manage.
Exercise is another way to help keep the pain at bay. I have to find moderate, low impact exercise for it to be helpful. I walk two miles every day to help keep my strength up and to keep my muscles moving. Muscles that don't move will build up lactic acid and lead to inflammation. If I exercise too much or do something too strenuous then I overtax my muscles and make them tense. When that happens I often have to take one or two days "off". I don't exercise on those days and try to relax on the couch as much as possible. But too much of taking it easy leads to achiness from not using my muscles. It's a fine balance. I used to lift light weights to help maintain my strength, but I noticed that my muscles became inflamed much quicker than when I wasn't lifting. Walking and swimming are low impact, but are great for maintaining strength.
Over time I did notice one thing that consisently seemed to make my muscles come to the point of inflammation rather quickly - sugar. Whenever I had desserts with quite a bit of sugar in them, within about two days my muscles would become inflamed and the only thing that would really help would be ibuprofen. After thinking about why sugar might have such an effect, I realized that my muscles aren't normal and they therefore don't absorb and process glucose the way most muscles do. People with Myotonic Muscular Dystrophies of any sort are at a higher risk to develop diabetes Type 2 because their muscles can't handle glucose very well. After cutting sugar (white, brown) out of my diet, I have felt better and my muscles don't tense up as quickly as they used to.
Muscular dystrophies tend to make a person more fatigued than the typical individual. From what I can gather the doctors aren't sure why that is. I have noticed that no matter how well I sleep the night before, I still feel quite tired the next day. Being tired is a part of my everyday life; there are different levels to the fatigue, but it's always there. I have learned to work through it. I will often just stop everything and rest my body for about 30 minutes with my eyes closed - most of the time I don't fall sleep, but I still feel somewhat refreshed after resting. I do need to get at least 8 hours of sleep at night, otherwise I really struggle the next day. If I didn't sleep well or enough I tend to tense up rather easily.
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