Learning to Live with Twitchy Body

[bfhopeful2]

I have made up my mind that i have nothing that is going to kill me. Good first step but these popcorn type twitches all over my body really suck. How do you live with almost no hope of it getting better? Don't the twitches alone just drive you fing nuts even if your not scarred about a terminal illness? Is it just something that you have to accept as life and learn to ignore them? Sounds good in theory, but mighty hard to do in practice. Maybe it is because I am new at this, but the thought of having these benign twitches my whole life really sucks. I mean I could hope that there would be periods that they don't come, or a medicine to lessen their requency significantly. Is it just really time that allows you to cope?

 

[MarioMasher]

Who said there is no hope of it getting better? BFS almost always gets better in time. For some people it might take weeks, for some it might take years, but anyone who has ever had it will tell you that time seems to lessen the symptoms. You just have to live your life, not stress over things, and be patient. Twitches only have the power to bother you if you let them.

 

[sarahnicole]

Effexor and time has helped me to deal with this Ive been dealing with this since the age of 16 I'm now 31 . I'm taking 75mg twice a day the dosage might something to do it.Whatever it is I'm grateful for it!

 

[ristinaL91]

Hi BFShopeful,I am an oldtimer around here....I am not even sure when I joined, I am sure it is posted by my name. I can assure you that there is life after BFS. It drives you nuts at the beginning, once you get all the cr*ap out of your head and realize that it is just BFS.....your life will go on.I hardly ever twitch anymore. I seem to get flare-ups, and for some reason the warmed weather seems to be the worst time for me. Some days I am achy, and some days stiff. There are a whole manner of little annoyances that go with this thing....you get used to them. You don't let them throw you, and you plow through. I think it might be time that allows you to cope, or you just get tired of living with the worry, anxiety, and you get tired of letting BFS control your life. SO, you take it back....a little at a time. Till you notice one day you hardly think about it anymore, and you are living your life quite nicely. In the beginning if you need a bit of therapy, or anti anxiety meds, or anti-depressants to help you, then get them. Whatever it takes.I used to frequent this board for reassurance night and day. Then I made friends and I started coming here because I got so attached to the people I began to care for here, and I also wanted to help others, because this board helped me so much. One by one, we dropped off. Symptoms got less and less, and life was lived more, and more. Soon I was living my life well, and forgot to stop by, it just didn't bother me anymore. I hope that in a few days, weeks, months that you too forget to stop by because you are out living your life, and not at all letting this become the focus of it anymore.And...that being said...one day you will get the urge to stop by in a year or so and tell some "newbie" not to worry because you are doing so great. And also of course to see if any other oldtimer friends of yours are visiting as well, to say hi...and reconnect a bit.Best wishes to you, I know you will be fine.ristinaL91

 

[Krackersones]

People on this board very greatly in terms of the severity of the physical symptoms. There are meds that help people and for many of the meds you can tell if they help right away. I take Klonopin and it helps. If you can use distraction and other non-drug techniques, try those first. But if you are suffering and your life is coming apart from lack of sleep or ability to enjoy or do things, then you should know there are drugs to try.Krackersones

 

[BarbiePetals]

PrayMantus,I feel exactly like you. I've been given the BFS diagnosis over & over but it's the living with it that really sucks. How do you get used of your body popping like popcorn everyday of your life? I really dont know. I try to move around alot cause I don't twitch when I move. I miss the days of laying down to watch t.v. or laying in bed in the morning without my muscles firing off every second. It's hard. Some days I am good and other days where I feel like I will break down. This board has helped alot and I am taking it one day at a time. I am trying to turn my mind to other things like playing with my son or going for a walk. Just know you are not alone.

 

[sarahnicole]

Barbie I know how you feel but believe it or not it does get better it's like your mind get's used to them and after awhile. Either you don't feel them or when you do you just don't care anymore. I was16 when this started now I'm 31 and happy with twitches and all. I have my days when I get flare ups but they pass .So I go on and you will to after all what choice do we have. ♥

 

[bfhopeful2]

I have been taking klonopin to sleep at night and neurontin 3 times a day. That alone has reduced by twitching about 50%. According to him it's like a sprained knee. You can do nothing and it will probably heal on its own, but if you wrap it, ice it and take it easy then it should heal faster and possible for good. So the medication is to slow down the firing system and give the transmitters in the body a chance to relax and get out of the cycle. I dont know if it bs or not, but it sounded reasonable and is helping. My other option was sinemet which is for parkinson patients and well that increases dopamine which can cause physchotic episodes. I don't know probably just anxiety with that one, but I don't need anything else going on in my body. Hopefully these meds will give me a quicker recovery. I will sure let eveyone know.