christinasgirl123
Well-known member
...it is already 3 weeks ago that I had my first EMG anniversary. Of course I was convinced I was dying, imagined my kids growing up without me and the usual stuff. A crying mess, my mum and sis had to come and take care for my kids. My Symptoms were enormous, of course I was twitching but I was also tremoring all over and my fingers going crazy, and the pain and stiffness were so bad I could hardly walk. They got me a wheelchair in hospital because it was so bad 
I had places in my body so numb I could stick needles in there (which I did to self-test 
).For me it was IMPOSSIBLE to believe that this could be benign. Then I found this forum and started to feel better, especially because I found a person that had been going through all that weird stuff I mentioned in my 126 sx post......she was close to her 2 year mark then and doing much better, so I thought...OK, maybe those 5 neuros at hospital and my home-neuro are right and I am NOT going to die of ALS.As noone really knew what it is I "decided" to treat it like Fibromyalgia and saw a Fibromyalgia specialist I also make physio therapy, well, today I am much much better than a year ago. Many many days I am symptom free, although I still have relapses whenever I have an infection or a hormonal change. There are many different opinions about the reasons of BFS, even many many names it is given. I found pieces my personal "truth" about MY BFS, but I think there are different reasons for most people on here. So at some point I just let it go. Noone will make it definate...noone will give me the exact reason, an exact diagnosis or the wonder-pill that will cure me. So I just give a *beep* about that part. The part I focused on is how to find relief in symptoms and I found mine. Some days I still feel like crap, especially the first days of a little cold that always make my BFS go crazy. My hands still have an almost constantly swollen feeling, a reminder of the Fibromyalgia parts in BFS. I hated my BFS a year ago. Today I am not so sure. I think today I am stronger , live healthier and have less anxiety than before BFS. I enjoy my life more, I am a much more relaxed person and I am happier. Somewhere on that path I also lost my IBS for most part which had been constalntly there for the last 18 years.I have met a bunch of really really nice people and I have learned a LOT about anxiety, not only my own but also that of others. BFS forced me to confront myself with parts of me and my past I did not want to see or think about, but it was necessary.Saying I am thankful for it would be wrong as well, because BFS is a beast that took away a whole summer from me and-much worse-my kids who had taken their mum mentally away for months. It feels terrible if you look at your kids and you are so srewed up that you don't feel anything..how bad must it be for those little guys to look into their mommies eyes and see nothing but emptyness?? Someone recenly said that anxiety is a selfish disease..that is right. It puts yourself and your symptoms in the center of your attention and leaves out the ones that need U. I still feel guilty for being a really bad mum then. But I try to be a good one now and to NEVER go back into that dark place I was then. Oh, and I learned to stay away from Dr. google 
I had places in my body so numb I could stick needles in there (which I did to self-test ).For me it was IMPOSSIBLE to believe that this could be benign. Then I found this forum and started to feel better, especially because I found a person that had been going through all that weird stuff I mentioned in my 126 sx post......she was close to her 2 year mark then and doing much better, so I thought...OK, maybe those 5 neuros at hospital and my home-neuro are right and I am NOT going to die of ALS.As noone really knew what it is I "decided" to treat it like Fibromyalgia and saw a Fibromyalgia specialist I also make physio therapy, well, today I am much much better than a year ago. Many many days I am symptom free, although I still have relapses whenever I have an infection or a hormonal change. There are many different opinions about the reasons of BFS, even many many names it is given. I found pieces my personal "truth" about MY BFS, but I think there are different reasons for most people on here. So at some point I just let it go. Noone will make it definate...noone will give me the exact reason, an exact diagnosis or the wonder-pill that will cure me. So I just give a *beep* about that part. The part I focused on is how to find relief in symptoms and I found mine. Some days I still feel like crap, especially the first days of a little cold that always make my BFS go crazy. My hands still have an almost constantly swollen feeling, a reminder of the Fibromyalgia parts in BFS. I hated my BFS a year ago. Today I am not so sure. I think today I am stronger , live healthier and have less anxiety than before BFS. I enjoy my life more, I am a much more relaxed person and I am happier. Somewhere on that path I also lost my IBS for most part which had been constalntly there for the last 18 years.I have met a bunch of really really nice people and I have learned a LOT about anxiety, not only my own but also that of others. BFS forced me to confront myself with parts of me and my past I did not want to see or think about, but it was necessary.Saying I am thankful for it would be wrong as well, because BFS is a beast that took away a whole summer from me and-much worse-my kids who had taken their mum mentally away for months. It feels terrible if you look at your kids and you are so srewed up that you don't feel anything..how bad must it be for those little guys to look into their mommies eyes and see nothing but emptyness?? Someone recenly said that anxiety is a selfish disease..that is right. It puts yourself and your symptoms in the center of your attention and leaves out the ones that need U. I still feel guilty for being a really bad mum then. But I try to be a good one now and to NEVER go back into that dark place I was then. Oh, and I learned to stay away from Dr. google 
) 