Last night I have been really wondering what I was doing on this planet. I have been fighting, really fighting, with this so called BFS for 5 years and half. Started with twitches to the right triceps, which got worse and worse. Of curse, I got almost used to them, but truthfully the amount of twitching got overall worse. 2 EMGs, 4 Neuro, visits and EMG spaced by years, all with the same answer. And I do indeed exercise and I do all the rest. But with tumpering twitches like the one I have now on my right side of the abdomen, or flank, to add-up to all the other more random twitches, is a task. In fact, I slept perhaps 8 hours in 3 days. Do not get me wrong, I have no plan to leave the fight, but, sigh, it is tough.
Struggling with BFS for 5 Years
- Thread starter edadoStar
- Start date
I am almost a year and I have same problem and it is getting worse also, twitching and the rest. And I can relate about the sleeping. It is hard I know when your abdomen does that, mine does for 3 months now about 50% of the time, day or night 
I know it is hard. Stay strong, you are not alone!
I know it is hard. Stay strong, you are not alone!I had only one neuro exam and no EMG because I think they will find nothing wrong, I have it to generalised to have anything local. As I have pain/paresthesia/twitching/buzzing/tingling/paresthesia that in a year almost 100% excludes ALS I think, so I don't know what I have and neither do doctors.For the wonderfull children and supportive wife you have to stay strong. But you have to know at any moment you are not alone with problems, there are guys and gals all over this planet with same problems like you and me. On some confort, you have it 5 years, seems it doesn't kill you, just makes your life more miserable. But you know what, you know what is a good day and appreciate it better than the ones who don't struggle.Take care, my twitching friend...
What a few days! Twitching is incredibly florid. Legs, shoulders, trunk (my back did well in the past), abdomen, arms. All at the same time and rather happily. A constant "music". I wake up with something here of there calling for my atttention. Unfortunately, it is just my body. I wonder how many here have noticed a worsening pattern in the years.
Edado,I am only 17 months into BFS. I say "only" because you afer much further along. But I have definitely seen a progression in my symtpoms. I've been to the best neuros in the country and it kind of irks me when they say "you will likely have peaks and valleys with BFS". Peaks and valleys? I only have peaks. Where are my valleys? My twitching is worse each month. There is some new hotspot, more frequent twitching somewhere else, etc. My tongue is the worst for me. It started with a few clear tongue twitches here and there. Then it became more frequent, like a few times a day everyday. NOW, it is *beep* near constant. The front part of my tongue tugs and pulls all day long and I get real fascics all over the sides and underneath. I can show off my tongue twitches at any given time. It is always going. I am quite convinced that it is never going to get better, at least not in the near futre. But the good news is that its just twitches. It drives me crazy somedays, well, most days. But in the grand scheme of things, there are much worse things out there. So I feel blessed in that sense. -Matt
6 Well, it scares me, if Matt doesn't have it, it is beeeepppp bad 
Jerry,Sorry if this comes across as rude, but how the *beep* do you know I don't have that kind of twitch? I really want to know why you believe that you know what I experience from day to day? I get all kinds of twitches. Lots of people on here do. Stop convincing yourselves of things that you don't know anything about.I just searched for your video and found it. I hadn't seen that thread on here before today. If you run a search of my posts you'll see that I have that exact same hotspot going on. Its a slow rolling twitch in that same area mostly on my left hand. Go ahead and look at some of my posts in September and early October. You'll find them. -Matt
Guys, I really do not know what to say. In one hand, I do not feel weaker and I still do my traning sessions and I am objectively strong. In the other hand, as I said, unquestionably my twitching got worse. At the beginning I almost had to look for the twitching to come, now is there at all times. No nubmess, or clumsiness, or pain (which I had at times). Cramps are quite rare, but I had them as well. Pretty much from the start, I have been taking VitE and B12. Cretinine and creatine at times. CoQ as well, but more seldom. I played with water intake and tonic water. I have my ideas, but I am still looking for something that could stop, or reverse this pattern. Age (yet I am just 42 going for 43, all started when I was just 37) may something to do with, but I am ready to bet genes and env may play a role. Anxiety? Of course, but I bet you not being anxious if someone is "knocking at you" at night or when you are busy with your job. Perhaps I did exercise too much, I don't know. Surely now I keep it easy. Guess what, I am still scared to. I said it before. I wish we could, all of us, try different strategies and come-up with some interesting finding. I hope we will.
edado, we started at the same time. After 3 or 3,5 years, it got definitely worse. I also checked my MVC (the non-needle part of EMG) and found that I have F wave persistence lower than I had few years ago, which of course added a lot to my worry as F wave has to do with anterior horn cells and for me it got from 100% to 46% (50% is minimum but this is still acceptable). But carbamazepine helped me a lot. If you did not try, definitely go for it. Try 600mg per day, it must help!Usually, combination of carbamazepine and benzodiazepines works, so its worth a try.
Jerry,I hope I didn't come across wrong. I was trying to show how your mind convinces you of things that aren't true. It is clear from your post that you believe you are the only one who gets that type of twitch. Not true. I get them, Bill gets them, and I'm sure countless other people on here have that twitch just like in your video. In the video you posted of my index finger. That twitch was just a random hotspot. That is nothing like the slow rolling twitches that I get nearly every day in that area. -Matt
How could I describe the way I feel today?Had a good rest last night...Feeling too bad nevetheless.My fasciculations are getting worse. My left calf, which has been twitching more often than the right also in the past, is a non-stop..Face, as I said above. Body...Pops everywhere. Long gone are the times when I thought that twitches were affecting one body part at the time...Some aches, particularly to the left calf. But, this is nothing.My mum, 72, is getting worse. A few falls over the last couple of years and 3 fractures. They think this is Parkinsonism. She is struggling speaking now and swollowing. Levodopa is not helping. At 68 she was quite fit. The right leg, particularly in the evening, does not wish to move/respond to commands. Younger brother, 40. Fasics for years. He is not bothered, but the right arm did get weaker (and lost bulk/so the right side of his chest). Still doing everything well. Physiotherapist blamed the shoulder. My mind goes you know where...My thoughts produce physical pain. For my kids, first of all, and my wife. I try to keep all inside. Typing this is just let go out a bit of the pain. Sorry.
BlueWolf92
Well-known member
Raindog, I like your idea about how we (some more than others) might be stressing our bodies too much physically. I know I stress mine more mentally and emotionally, but there are many who push their bodies too hard in the physical sense, yes? Either way, the body can only take so much and there are limited ways (I assume) it can show you that you are pushing it beyond perhaps where it is "designed" or wants to go. I think the symptoms we have are some of those ways our body tells us "enough". As Secret Agent Man tells us (as many others like you and the other sages on the board), we need to make a change. The tough part is making a change when your body has revolted in such a way that it scares the bejesus out of you. But that is exactly when we need to do it....
I feel the same like you, Edado...I am asking myself "if this is benign, why it is progressing over the years", and some more questions. Tegretol helps me, but its effect its diminishing with every usage. I wake up every day around 2:30 AM and have issues to fall back asleep...
My constant posting is in keeping with the unprecedented pattern of my fasciculations. At the least I can now see that there is a difference between twitching and constant, generalized, popping up - many places everywhere at the same time. The change has been somewhat abrupt over the last couple of weeks. Reading back my old post, I can see that I had changes of pattern and fasciculations got worse overall, but this is on a different level. I reduced my training, but this made no difference. Actually, should there be any relationship, it made it worse.
FernFinnegan
Well-known member
Sorry you are struggling so. I am still six years behind you so certainly can't offer any advice except to check your anxiety level and general level of happiness and check it carefully. Sometimes I am more stressed than I realize. Often when I have had any somatic symptom my husband asks "what are you stressed/worrying about?" It made me mad and often I could not think of anything right away, but more often than not, I think he is probably right. Some of us are just more "wired" to carry stress in our physical bodies and twitching can be a result of doing that too much for too long.
A few days when at the least I could sleep, but now 5 days of very florid, constant, fasciculations to lower and upper limbs, and back.No sleep, and this is not because I am not tired.I have tried my usual remedy (gym in the evening): not helping.The most remarkable aspect is the fact that twitches are more diffused (many fasciculations on the same muscle) and constant.Hands are particularly affected.Scary as much as bothersome (the two are interchangeable...). But, I am trying my best.PS: still doing press-ups on the tip of my fingers