Lilac
09-03-2014, 04:47 AM
I have told this story before, and just posted it in another thread. However, I would like to make this post into a thread as well, and I hope for some further advice on how to proceed.
In May I ran a relay race, and I overdid it. During the race I felt like I was about to faint and my legs hurt. When I finished, I could barely breathe. In the days after I experienced pins and needles as well as a tingling sensation in my arms and face. Long story short, I became anxious about them and went to the doctor several times. My heart and lungs were fine, and he said it was over-exertion. I just had to relax and let my body heal itself. I have struggled with an eating disorder (normal weight) for a few years, as well as iron and vitamin deficiencies and I don't exercise regularly. So, my body was probably not fit to run such a race to begin with, although I ran the shortest leg of the race. I ran faster than I've ever done before.
I also experienced muscle twitches (fasciculations) after the race. I have had them before, everyone has. Sometimes more often, due to my deficiencies. But my vitamin and mineral levels prior to the race were actually quite fine, despite my eating disorder. The twitches could not be explained by deficiencies this time.
So I started focusing on them, looking at them. All day long. Went to the doctor again, and the emergency room. That was when the anxiety really started. They said the twitches was caused by the race and over-exertion and my muscles and nerves were just tired and "irritated". It would just become worse if I kept focusing on them. I had to stop worrying because that would cause muscle tension and even worse twitching.
But I couldn't get them off my mind. They were so annoying and horrifying to look at. They were located to my calves and feet at that point, and sometimes around my knees.
I have known about ALS for some years, so I started making that connection. I have spent my ENTIRE summer reading and watching videos about ALS. I have spent all day looking at myself in the mirror and measure my body with a measuring tape. I was looking for asymmetry and muscle atrophy (wasting). Naturally, I found out that my non dominant left hand and arm is smaller than my right. This is natural to most people, as the dominant hand IS a little bigger and stronger than the other. And I use my right hand to everything. However, I convinced myself this was ALS muscle wasting. I found several "dents" in my body, which are actually just muscle definitions, and also thought they were wasting. I took several hundred pictures of myself every day to compare with pictures from the month before, etc. All I could think about was ALS, and I could see it everywhere. I was convinced I had it. I even dreamed about it every night for several months. I started feeling weak, and became scared of standing up, walking or lifting. I feared my body would fail. Yet, I took long walks and lifted weights EVERY DAY to prove my anxiety wrong.
My eating disorder had created a twisted body image, and to me I looked like a whale. All I could ever see was fat, fat, fat. I used to like my left arm better exactly because it IS a little thinner than my right.
With the ALS anxiety, however, my brain shifted focus. I went from seeing a huge whale, to seeing a fragile and atrophied young woman (I'm 25) with ALS. My left arm was now too thin - it was wasting away. My entire body was too thin. This is a perfect example of the power of your brain, because my weight and measurements were the exact same as before. Only my body image had changed.
The ALS anxiety took over my life, and the twitching became even worse. I stopped caring about my Master thesis, because I was sure I would be dead within a few years anyway. Finishing my degree would just be a waste of time since I would have no use for it. I stopped planning my future and looking forward to travelling etc. I seriously thought about leaving my boyfriend, because I had no future with him. I had ALS. I wanted to let go of my friends and family, and quit my job. I would not live to see 30, why should I keep them in my life? I couldn't sleep, and I considered ending my own life. Ironically, perhaps, but I would rather die on my own terms. I could never accept living with a disease that would slowly take away my ability to move my limbs, speak, eat or breathe. I had anxiety attacks so bad I ran (yes I ran, an ALS patient can't do that) out of my apartment, down the stairs and out in the street, trying to physically escape the thoughts.
I went to a neurologist and did a general clinical examination. I then did an EMG/NCV to prove my own fears. It ruled out ALS. There was nothing to find, not even twitching! I had twitching all the time, especially in my legs. How could this be? There was NO neurological and neuromuscular diseases that caused my twitching, and the neurologist said they would disappear if I got enough sleep and stopped putting more pressure and tension to my muscles and nerves.
I still couldn't calm down. And the twitching didn't go away. I wanted them to go away. I went to my GP again, and told him everything that I have written here.
I was diagnosed with a severe health anxiety (I have GAD as well), and was prescribed medications (Sobril, a Norwegian brand of benzodiazepines) for it. I have been seeing a therapist since December 2013 for my ED, perfectionism and GAD, and now we had to tackle the ALS anxiety as well. I continued being scared. My GP said that even if the twitches will not go away for another TWO YEARS, I just had to ignore them!
I have had twitches more or less constantly (but not exactly 24/7) in my legs and feet. With the anxiety, the twitching spread. I have had them in every skeletal muscle that is: calves, feet, thighs, butt, abdomen and stomach, back, arms, hands, throat, neck, cheek and jaw, eyelid, eyebrow, forehead, etc. They kind of "jump" from one body part to another, and never occur in my entire body at once.
Something happened two weeks ago. I started taking more vitamins, and also magnesium, potassium, calcium and chromium (?). I don't know if they actually had an effect, or if it was just placebo, but my body became a bit more relaxed. The twitching decreased! My insomnia got better, because I stopped going to bed fearing I wouldn't fall asleep. And along with a good night sleep comes an even more relaxed body and mind. The twitching decreased even more, and I entered a more peaceful state of mind. I started writing on my thesis again, seeing friends and family, and got a new outlook on life.
Now the twitching occurs every once in a while. I have accepted now that my body, and especially my nervous system, needs time to heal and recover after months of severe tension, stress and insomnia, and that is probably why the twitching has not disappeared completely. And they do become worse when I am stressed, have been taking long walks, etc. But they disappear quickly.
I was living in my own bubble; all I could think about was ALS. I could hear people speak to me, but I didn't listen to their words. I was just in an ALS world. I started getting paranoid, and with the "ALS Ice Bucket Challenge" feared that the disease was following me. I could see it and feel it everywhere, like it was a common cold.
Now, the ALS fear is fading away. It attacks me sometimes, and my brain starts to analyze. I start looking at my hands and arms, feet an calves. Are they smaller, are they weaker? But I no longer nurture those thoughts. No longer believe in them. I just... wake up and... live my life? I can't feel my eating disorder anymore either. It kind of disappeared with the health anxiety, and has stayed away. I don't like to gain weight; I don't like the feeling of being full. I don't LIKE what I see in the mirror, or the number on my scale. But I accept it. And I accept food, that food is good for my body. It keeps me healthy and strong.
I think to a certain degree, that I have accepted me and who I am. I have anxiety, and maybe it will come back. But for now, for the past two weeks, I have not felt it as much. I go through the day like most people; I write on my thesis, I go to work and I DO my job, I visit friends and eat dinner, without thinking about getting fat. I enjoy the food and company. I am no longer afraid of being asked to go to family events because I have to eat dinner and cakes. I do it, and I don't care.
And ALS no longer has a tight grip on me. I respect it, but it doesn't control me as much anymore.
So to the question, what happens now? What does this mean? And how do I keep myself from falling into the same destructive pattern again? I guess I can't. But a part of me fears what happens next. Is it truly possible for me to just be healthy and happy? Without anything bad happening? Without me being self-destructive?
In May I ran a relay race, and I overdid it. During the race I felt like I was about to faint and my legs hurt. When I finished, I could barely breathe. In the days after I experienced pins and needles as well as a tingling sensation in my arms and face. Long story short, I became anxious about them and went to the doctor several times. My heart and lungs were fine, and he said it was over-exertion. I just had to relax and let my body heal itself. I have struggled with an eating disorder (normal weight) for a few years, as well as iron and vitamin deficiencies and I don't exercise regularly. So, my body was probably not fit to run such a race to begin with, although I ran the shortest leg of the race. I ran faster than I've ever done before.
I also experienced muscle twitches (fasciculations) after the race. I have had them before, everyone has. Sometimes more often, due to my deficiencies. But my vitamin and mineral levels prior to the race were actually quite fine, despite my eating disorder. The twitches could not be explained by deficiencies this time.
So I started focusing on them, looking at them. All day long. Went to the doctor again, and the emergency room. That was when the anxiety really started. They said the twitches was caused by the race and over-exertion and my muscles and nerves were just tired and "irritated". It would just become worse if I kept focusing on them. I had to stop worrying because that would cause muscle tension and even worse twitching.
But I couldn't get them off my mind. They were so annoying and horrifying to look at. They were located to my calves and feet at that point, and sometimes around my knees.
I have known about ALS for some years, so I started making that connection. I have spent my ENTIRE summer reading and watching videos about ALS. I have spent all day looking at myself in the mirror and measure my body with a measuring tape. I was looking for asymmetry and muscle atrophy (wasting). Naturally, I found out that my non dominant left hand and arm is smaller than my right. This is natural to most people, as the dominant hand IS a little bigger and stronger than the other. And I use my right hand to everything. However, I convinced myself this was ALS muscle wasting. I found several "dents" in my body, which are actually just muscle definitions, and also thought they were wasting. I took several hundred pictures of myself every day to compare with pictures from the month before, etc. All I could think about was ALS, and I could see it everywhere. I was convinced I had it. I even dreamed about it every night for several months. I started feeling weak, and became scared of standing up, walking or lifting. I feared my body would fail. Yet, I took long walks and lifted weights EVERY DAY to prove my anxiety wrong.
My eating disorder had created a twisted body image, and to me I looked like a whale. All I could ever see was fat, fat, fat. I used to like my left arm better exactly because it IS a little thinner than my right.
With the ALS anxiety, however, my brain shifted focus. I went from seeing a huge whale, to seeing a fragile and atrophied young woman (I'm 25) with ALS. My left arm was now too thin - it was wasting away. My entire body was too thin. This is a perfect example of the power of your brain, because my weight and measurements were the exact same as before. Only my body image had changed.
The ALS anxiety took over my life, and the twitching became even worse. I stopped caring about my Master thesis, because I was sure I would be dead within a few years anyway. Finishing my degree would just be a waste of time since I would have no use for it. I stopped planning my future and looking forward to travelling etc. I seriously thought about leaving my boyfriend, because I had no future with him. I had ALS. I wanted to let go of my friends and family, and quit my job. I would not live to see 30, why should I keep them in my life? I couldn't sleep, and I considered ending my own life. Ironically, perhaps, but I would rather die on my own terms. I could never accept living with a disease that would slowly take away my ability to move my limbs, speak, eat or breathe. I had anxiety attacks so bad I ran (yes I ran, an ALS patient can't do that) out of my apartment, down the stairs and out in the street, trying to physically escape the thoughts.
I went to a neurologist and did a general clinical examination. I then did an EMG/NCV to prove my own fears. It ruled out ALS. There was nothing to find, not even twitching! I had twitching all the time, especially in my legs. How could this be? There was NO neurological and neuromuscular diseases that caused my twitching, and the neurologist said they would disappear if I got enough sleep and stopped putting more pressure and tension to my muscles and nerves.
I still couldn't calm down. And the twitching didn't go away. I wanted them to go away. I went to my GP again, and told him everything that I have written here.
I was diagnosed with a severe health anxiety (I have GAD as well), and was prescribed medications (Sobril, a Norwegian brand of benzodiazepines) for it. I have been seeing a therapist since December 2013 for my ED, perfectionism and GAD, and now we had to tackle the ALS anxiety as well. I continued being scared. My GP said that even if the twitches will not go away for another TWO YEARS, I just had to ignore them!
I have had twitches more or less constantly (but not exactly 24/7) in my legs and feet. With the anxiety, the twitching spread. I have had them in every skeletal muscle that is: calves, feet, thighs, butt, abdomen and stomach, back, arms, hands, throat, neck, cheek and jaw, eyelid, eyebrow, forehead, etc. They kind of "jump" from one body part to another, and never occur in my entire body at once.
Something happened two weeks ago. I started taking more vitamins, and also magnesium, potassium, calcium and chromium (?). I don't know if they actually had an effect, or if it was just placebo, but my body became a bit more relaxed. The twitching decreased! My insomnia got better, because I stopped going to bed fearing I wouldn't fall asleep. And along with a good night sleep comes an even more relaxed body and mind. The twitching decreased even more, and I entered a more peaceful state of mind. I started writing on my thesis again, seeing friends and family, and got a new outlook on life.
Now the twitching occurs every once in a while. I have accepted now that my body, and especially my nervous system, needs time to heal and recover after months of severe tension, stress and insomnia, and that is probably why the twitching has not disappeared completely. And they do become worse when I am stressed, have been taking long walks, etc. But they disappear quickly.
I was living in my own bubble; all I could think about was ALS. I could hear people speak to me, but I didn't listen to their words. I was just in an ALS world. I started getting paranoid, and with the "ALS Ice Bucket Challenge" feared that the disease was following me. I could see it and feel it everywhere, like it was a common cold.
Now, the ALS fear is fading away. It attacks me sometimes, and my brain starts to analyze. I start looking at my hands and arms, feet an calves. Are they smaller, are they weaker? But I no longer nurture those thoughts. No longer believe in them. I just... wake up and... live my life? I can't feel my eating disorder anymore either. It kind of disappeared with the health anxiety, and has stayed away. I don't like to gain weight; I don't like the feeling of being full. I don't LIKE what I see in the mirror, or the number on my scale. But I accept it. And I accept food, that food is good for my body. It keeps me healthy and strong.
I think to a certain degree, that I have accepted me and who I am. I have anxiety, and maybe it will come back. But for now, for the past two weeks, I have not felt it as much. I go through the day like most people; I write on my thesis, I go to work and I DO my job, I visit friends and eat dinner, without thinking about getting fat. I enjoy the food and company. I am no longer afraid of being asked to go to family events because I have to eat dinner and cakes. I do it, and I don't care.
And ALS no longer has a tight grip on me. I respect it, but it doesn't control me as much anymore.
So to the question, what happens now? What does this mean? And how do I keep myself from falling into the same destructive pattern again? I guess I can't. But a part of me fears what happens next. Is it truly possible for me to just be healthy and happy? Without anything bad happening? Without me being self-destructive?