Hello All,
I was surprised to find this place. I have had BFS for so many years, and many of them I have "suffered in silence" and never connected with anyone else who had this problem. So it's kind of cool to find a forum now.
I remember clearly that this all started for me when I was 13 years old. I noticed a muscle was twitching in the back of my upper thigh. I remember I was standing in the guest bedroom, looking out of the window when it happened. Odd how we remember these things. It was just one muscle, but it was disturbing. I knew nothing about ALS or any other diseases back then, so I did not have those worries. I never told my parents. Actually, I had a feeling of shame associated with it. The muscle twitches were not over my whole body. They would generally be in one place and last several days. I would often have a break before there was another "hot spot". But in general these occurrances made me feel like a "freak" and a "spazz". So I kept them secret. They were not in a place where others could see. And it just became a shameful secret.
That year, I did disclose my problem to a doctor privately. I tried to get her to feel a small spot of buzzing that had developed near my ribs. She was nice, but had no idea what I was talking about and I felt really stupid.
I do not have constant twitching and never all over my body at once. I usually have one, sometimes two "hot spots" at a time, and the twitching lasts for several days before going away. In all of these years I have had a number of hot spots. Until the last few years, I had never had them in my face. But now I do get them on my face occasionally and it is extremely depressing because I am always afraid others will see the twitching and think bad things of me.
During the years I have had times of little or no twitching and times when it was intensified. I have tried to determine why it happens. I've had times of altering my diet and exercising more or less. I've tried keeping track of my symptoms to see if the whole thing was related to my menstrual cycle. I've tried lots of things, been on some meds, but have never really come to any conclusions. The twitching seems to have a will of it's own. But I will say that stress does seem to make the hot spots come on.
I think I am now just coming off a bad time. I had twitching in muscles around my right eye for several weeks that was highly distracting. The thing about the twitches is while they don't hurt, they distract me a lot. They bother me and make me sad. I hate the actual feeling of them. And I hate not having control of my own body. When it's happening it seems to take a lot out of me. I long for it to stop. I imagine having a drug that I can inject into the spot to make it stop. It's just stressful and unpleasant for me.
Perhaps I have painted a grim picture here. So I should also say that although I have had this problem for many years, I have still pressed through with what I want in life. I went to college, married, adopted a child. I am currently changing careers and studying again, which might be causing me some anxiety, hence the flair up. But I am having a good life and have no health problems. (Knock on wood!) For that I am extremely thankful.
I do not worry about this killing me because I figure if it was going to do that, it would have by now. I do worry about the condition worsening as I get older, though I had entertained the notion that it might get better after menopause. (I think I have these thoughts because the BFS started the same year I started my period.) I went through a time that I worried that the muscles in some vital organ would be affected. Mostly I worry about visible twitches that might cause people to stop interacting with me. I still have that sense of shame, even though I have done nothing wrong.
So that is my story. Thanks for reading. It feels really good to be able to "talk" about it.
-Trae
I was surprised to find this place. I have had BFS for so many years, and many of them I have "suffered in silence" and never connected with anyone else who had this problem. So it's kind of cool to find a forum now.
I remember clearly that this all started for me when I was 13 years old. I noticed a muscle was twitching in the back of my upper thigh. I remember I was standing in the guest bedroom, looking out of the window when it happened. Odd how we remember these things. It was just one muscle, but it was disturbing. I knew nothing about ALS or any other diseases back then, so I did not have those worries. I never told my parents. Actually, I had a feeling of shame associated with it. The muscle twitches were not over my whole body. They would generally be in one place and last several days. I would often have a break before there was another "hot spot". But in general these occurrances made me feel like a "freak" and a "spazz". So I kept them secret. They were not in a place where others could see. And it just became a shameful secret.
That year, I did disclose my problem to a doctor privately. I tried to get her to feel a small spot of buzzing that had developed near my ribs. She was nice, but had no idea what I was talking about and I felt really stupid.
I do not have constant twitching and never all over my body at once. I usually have one, sometimes two "hot spots" at a time, and the twitching lasts for several days before going away. In all of these years I have had a number of hot spots. Until the last few years, I had never had them in my face. But now I do get them on my face occasionally and it is extremely depressing because I am always afraid others will see the twitching and think bad things of me.
During the years I have had times of little or no twitching and times when it was intensified. I have tried to determine why it happens. I've had times of altering my diet and exercising more or less. I've tried keeping track of my symptoms to see if the whole thing was related to my menstrual cycle. I've tried lots of things, been on some meds, but have never really come to any conclusions. The twitching seems to have a will of it's own. But I will say that stress does seem to make the hot spots come on.
I think I am now just coming off a bad time. I had twitching in muscles around my right eye for several weeks that was highly distracting. The thing about the twitches is while they don't hurt, they distract me a lot. They bother me and make me sad. I hate the actual feeling of them. And I hate not having control of my own body. When it's happening it seems to take a lot out of me. I long for it to stop. I imagine having a drug that I can inject into the spot to make it stop. It's just stressful and unpleasant for me.
Perhaps I have painted a grim picture here. So I should also say that although I have had this problem for many years, I have still pressed through with what I want in life. I went to college, married, adopted a child. I am currently changing careers and studying again, which might be causing me some anxiety, hence the flair up. But I am having a good life and have no health problems. (Knock on wood!) For that I am extremely thankful.
I do not worry about this killing me because I figure if it was going to do that, it would have by now. I do worry about the condition worsening as I get older, though I had entertained the notion that it might get better after menopause. (I think I have these thoughts because the BFS started the same year I started my period.) I went through a time that I worried that the muscles in some vital organ would be affected. Mostly I worry about visible twitches that might cause people to stop interacting with me. I still have that sense of shame, even though I have done nothing wrong.
So that is my story. Thanks for reading. It feels really good to be able to "talk" about it.
-Trae