Living With BFS Since 18

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twitchplayspokemon

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When I first posted here I was 19, now I'm 20, although I've had BFS since 18 (started university=- stress/anxiety).I've seen a neuro and two P and R doctors and have done an EMG here in Toronto, ON and there is no doubt that what I have is BFS. The thing is no one wants to treat me (with drugs) and sent me back to my family doctor who also does not know what exactly to doas he does not want to give me a benzo whatsoever (short term, side effects, my "young" age, addictive etc...) and I do not want to take anticonvulsants whatsoever. He is sending me to see another reputable neuro but this is probably just a redundancy - but why not, it's Canada. My symptoms include incessant twitching and cramping plus sensory sensations, fatigue, and restlessness.I've tried exercise, no exercise, relaxing, bath salts, not relaxing, 5htp, theanine, ignoring, distractions, yoga, not identifying it as a problem etc...Stressed or not, the twitching and other symptoms are always around.....I KNOW THIS IS BEATABLE BUT I CAN'T DO AWAY WITH...andit's impacting my life. (I don't do drugs and get regular sleep).ANY ADVICE/HELP WOULD BE APPRECIATED.... (e.g. specific exercise routines)THANKS
 
So, I noticed you haven't tried diet... There's a good diet experiment going on. You could always go and get a blood test to find out if you've got a bunch of new food allergies you never had before, but if you haven't considered the gut connection to your neurological symptoms you may want to. What caught my attention in your post was the fatigue mixed with the restlessness. I had this a lot with my BFS symptoms. The fatigue and restlessness both were tied to an intolerance I had developed to gluten. Check out our diet experiment thread. Its free and easy to try. You just might surprise yourself. Good luck and I hope you feel better soon.
 
Hi, it is funny, that you may have advices from known adepts of two absolutely different approaches (I mean SAM always promotes dietary approach and I always stress on importance of speaking therapy).But generally you may combine, if you wish, and from your post it is not clear if you mananged to remove stress factors from your life (as much as possible of course). Having regular sleep is important, but do you sleep well? Dont you have 'thin' sleep, awaking every few hours, difficult getting asleep (reading or watching movies for hours to get asleep) etc? What else stresses you except your twitches? What makes your brains running up at the high speed?You may try diets of course (remembering that they are stress factors too - so I mean you should be careful, because they all are a bit of blind try method), and you may aslo seek an answers for the questions like why the fact you are twitching is so important and definitely impairing your life, and what overall is going with your life, which is a field of speaking therapy.wish you a good relief in any way :)
 
My recommendation is to do things to reduce your anxiety and change focus FROM your symptoms back to your daily activities. As with most all twitchers, diet along with everything else will not fix the situation. In fact, staying on the current path of trying everything is probably making things worse, as it has for most who've done the same. Many have wasted months/years of their life focused on these harmless symptoms looking for fixes. I recommend learning from what we already know.
 
I can totally understand that you do not want this. It is a nuisance. Sometimes more than that. It is always difficult to give advise in situations like that. Because you cannot get distraction from your symptoms and move them out of your focus ( which is usually the way most BFSers learn to deal very well with their BFS) and at the same time find causes that worsen or improve your symptoms ( because on ths case, you totally have to focus on your symptoms).So I think there are some basic questions : how is BFS impacting your life? Is it impacting it in a mental way or rather in a physical way? I mean, twitches and tremors to a certain degree should be tolerable after a while, but I know from my own experience that immense pain is just not. Is it anxiety about bad diseases that is bothering you? Or is it that kind of thinking I went through " I don't want this, I want everything to be normal " ( imagine me stamping my feet to the ground with tears of wrath in my eyes like a defiant child.... A scene from my kitchen about 2 years ago...."). All those things are normal. The anxiety, the anger, the will to kick this diseases butt. But I have learned that before everything, there's some kind of acceptence. Not necessarily the acceptance to live with this for the rest of you life, but for quite a while. And the insight that- the more you hate that condition- the more it will bug you. And this is something you will have to learn. Eventually BFS will be helpful for you. Eventually it will show you a way to a better stress management. Or to a better diet. Or a better lifestyle in general. But maybe it is " just" here for a while and noone really has an answer to it.I always suggest walking or jogging as a part of workout routine, because it gives you the possibility to get rid of some stress hormones. And if you run outside, you can enjoy the nature around you and tbe beauty and will be distracted from your sx a bit. Or googe meditative running. The key is to do things that make you feel good. Not to hot the gym if you totally hate it, just to beat BFS. Your goal for now is to feel good and healthy, not to beat BFS. One probabl will lead to the other. If you consider a diet change, you will find a lot of information about it here. But do not do it with the aim to directly kill your BFS with it. Because that would mean focusing on your symtoms. But maybe you can do it, without putting ressure on yourself. If you feel better, great. ( I bet you will, but I mean BFS wise). If not, then it is not a catastrophe. Learning to cope with BFS is learning to relax and let things go. Which includes the expectations we have on ourselves and also on our body.
 

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