Long-Time Twitchers: Share & Hope

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SirTwitterAlot

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Any other long time twitchers? Let's post here to give some other people some hope that it's not all doom and gloom.I'm 28 now, and have been twitching since I was 19. Almost 10 years now. I remember my first big thumper twitch that appeared in my left bicep and wouldn't stop... scared the crap out of me.And I still get scared when the twitches get bad. But not a minute goes by without some part of my body twitching. I have had a twitch or jerk in almost every muscle imaginable... so I try to keep things in perspective.But I'm still alive. I worry all the time if my legs or arms have atrophied... but I can still play table tennis and go running and climb stairs.So there you have it. Coming up on 9 years now, and still ticking... and twitching.
 
Over 30 years here of twitching, buzzing, pins & needles, jerks, sleep starts, jaw problems, throat problems, dizzy spells, etc. Have had many remissions & lived a very happy, productive life, (my 1st couple of years I was a mess though). To me, this is a condition that, the longer you have it, remissions count, the less you fear that there is something terribly wrong. Hopefully many of you will have permanent remissions. Many of mine have been for several years. Best Wishes, Denise
 
46 years old here. Been constantly twitching 24/7 in my left calf for 24 years. The last 5 years benn twitching 24/7 inleft calf and right forearm and thumb. Also other places like left toes and both ankles and many other palces. It sure does suck. The hardest part is trying to relax. YOU F----ING CANT. i just sit there feel like a stinking popcorn machine. I cant even smoke pot because i get tested at work. *beep*. I have given up hope this crap is never going to go away until we drop dead. I was hoping that the right forearm twitching and major pain as well as the thumb twitching like crazy=might be carpal tunnel but the specialist said he never has seen twitching like that and doubts its from carpal tunnel. in fact he said he wouldnt even operate until i fou nd out what was set off those muscles. I found out the best way to deal with it is staying busy and i mean by moving around or just sitting in a hot tub fully submerged. Thats about it, face it people it sucks but it could be cancer, migraines, lupas, aids, or something else. This *beep* sucks i hate when people say look on the bright side. There is no bright side when u have it 24/7. at least with other crrap u have good and bad days with this there is no in between. :mad:
 
Im 26 years old now and noticible twitches started about 3 years ago. I have had them 24/7...and I MEAN 24/7 for a almost 2 years now. Not a second goes by that I dont twitch somewhere. Elbow, arm, foot, foot, foot, foot, calf, lips....those were my last 10 seconds of twitches. I am very happy to find out that there are people that get occasional thumpers, and I remember back when these started I would say "man this just did this last week" !!!!!! Wow if I only knew what I know now I would have been celebrating. But every day I celebrate. We are so lucky to be a member of THIS club. I dont care if I twitch...I live with it. Sometimes its hard to live with it...but I only have one other option and I want to live and enjoy my family and everything we have been given in this life. So everyone out there that is new to this, twitch and be happy. If your doctor cleared you then get out and live! Every day is a new start and you can do whatever you want! So while you can get out there and try something you have never done, get a new hobby, go for a walk in the park and look around. We do suffer with this condition but we can overcome letting it control our lives. It took way over a year to realize that, and that was a year I lost with my son watching him growing up and enjoying him being a baby. Sean B.
 
Hey everyone - I am officially a twitcher of one year this month - yeah! My symptoms have gotten a little better in the last month, only maybe twitched a few times in the month - I sure hope they go away! :D) Karin
 
I have been twitching 4-5 years. Had a year or year-and-one-half remission and it came back with a bang in Feb 08 with twitches and cramps all over my body. For me it has been up and down since Feb. Some days/nights are much better than others. When it really flares up and stays that way for days and days, I get pretty crazy. For me, cramping is a big part of this. The twitching drives me nuts and the cramping hurts like heck making my muscles stiff, sore, and shaky. When the twitches are bad, my feet are like blocks of ice. Sometimes I am not sure if my feet are freezing or burning! Horrible sensation. I've had the first 2 full body massages in a series I purchased, and I am going to get them regularly. I also started going to a chiropractor today. Just wanted to be sure that nothing in my spine is contributing to this mess.This forum has saved my sanity!Stacy
 
Id smoke POT, CRACK, SHOOT UP HEROIN if I thought it would take the twitching away...lol JUST KIDDDDDDING!!!!!!!!!!!!!!But yes at some point.. I thank God I am pregnant b/c there is no telling what measures I'd tried by now lol Maybe even amputation of arms, legs, head, back, feet, etc. :LOL: DeedeeI will say this...Magnesium along w/ CALCIUMplus D has helped me a lot. Maybe its mental I am not going to question it. Also warm baths, warm hot showers slow them down too.
 
FYI: I just had a wonderful hot stone massage---my hubbie took me for mother's day. I had forgotten that I actually could feel good again. I highly recommend it. It feels so good to have those muscles relax. I also get relief from the hot tub, or even just a hot bath or shower.Have any of you found any relief through the chiropractor? Hubbie goes a lot, but I've never been. Anyway, been twitching since November of 07. Before that in my late twenties---then a long remission (or else I was just busy raising my 2 sons and didn't notice). Now, back with the fear factor--trying hard to overcome. All you here are a true blessing---I think I would have had a breakdown in January if I hadn't found this place. Now, to agree with Sean---things really could be much, much worse. I can tell you from experience, the depression that can accompany this is worse than any twitch I've ever had. But, that too is overcomable. THanks for all of youCindy
 
Four years for me. I have to say that since my heart problems started, I have no time to worry about my twitches. I still have them, still feel weak, etc....however my mind is pre-occupied with other issues. I guess I needed to get my mind off this BFS stuff, it just stinks I needed another health issue to do it.Amy
 
Regarding chiropractors---yes, I've been going since my early 20's (over 30 years); I just got back from an appointment as a matter of fact. He really helps me with the "problem shoulder" areas as well as my neck and back. I highly recommend chiropractors, (however, it's important to find an experienced one). Also, have been going to acupuncture for about 10 years, it's so relaxing that I can go in stressed and fall asleep as soon as she begins the treatment. Also, I try to have a massage & reflexology at least once a month and I've done this for years. I think my nervous system is in "overdrive" and I notice these relaxation treatments REALLY HELP ME. I've also tried Reicke (spelling?) one time when I was having weeks of continuous PVC's (skipped heart beats--usually due to stress), believe it or not, they stopped almost completely the next day! Coincidence---maybe...I personally like the mixture of holistic and modern medicine. I use vitamin therapy & nutritional supplements as well. A lot of my family practices a mixture of the above. I have a nephew who is a chiropractor, one who is a licensed Reicke/Yoga teacher, my sister who is a licensed nurse and also teaches vitamin and nutrition. Best Wishes, Denise
 
First of all. Lovely - Lol. It sure would be nice to take this *beep* away :LOL: Im 25 years old. Got my first twitch (execpt eye) 2 years ago. Only in arms, legs and but. It (almost) went away. I got pregnant, twitches become more, looked at the net. And now not a single place of me haven´t twitched! I twitch from the morning when I open my eyes, to night when I close them. I twitch alot in feets, calves, thighs, back, arms, cheeks and random everywhere else.And it gets worse everyday :( I really do anything to get rid of (at least some) twitches! I HATE them, I can not enjoy my life because of them...
 
Finally, I don't feel so alone! Thank god for the internet. I'm 37 years old (male) and have been twitching for at least 20 years. Like I'm reading a lot on here, it started with an eye lid, and occassional finger, maybe a bicep here and there, and 20 years later, it's a constant twitch in my calves and my toes (which I wonder, are they really two different twitches, is the muscle in the calf causing the feet and toes to twitch??) I have them on occasion everywhere on my body. Any one ever have them on their scalp?? That's an odd one. I seem to notice them more when I'm in shorts (calves) or barefoot (feet). It's so hard to ignore sometimes. I'm confident that this is not a dangerous condition, as after 20 years, I'm sure it would have progressed into something much more serious. Would love to hear if anyone has had any success with treatment, my gp has mentioned Neurontin has shown some promise. But I wonder if anything not so commercial (herbal, massage, marijuana, etc) Although, I have learned to live with them, not twitching 24/7 would be nice, ever for a day or two. I imagine if there was a cure or something that controlled the condition, a forum such as this one, probably wouldn't need to exist, but would love to hear back from anyone to see if anything has helped. Jeff
 
Twitching for 6 years now. I run, hike, lift weights, usually walk at least a mile each day and I have no trouble. Sometimes I shake when I lift weights, but this seems to be somewhat common with BFS and it does not have any affect on my stregnth. While I worry like everybody else, I really have nothing to complain about, I twitch a lot, but it is nothing more than an annoyance that I've gotten used to.
 
Approximatly 4.5 years now. I like BJJ that's Jiu Jitsu for you funny guys. I noticed I use to kick a lot more asssss before but now after BCFS I am on the recieving end of the assss kicking more often but I am still alive.
 
Hi everyone, I've had 24/7 twitching in both calves, sides of my feet, thighs, above the knees, sides and stomach, arms, eyelids for over 18 months now. I sometimes get dizzy, my tongue twitches and I get the funny feeling too, lip twitches and all the rest. My feet sometimes fall asleep. When working out I cramp easily in my forearms and ham strings. I've tried no caffeine, no sugar and every other Drug/natural herb I can think of to try and get rid of this or take the edge off for 18 months now. I went to the neuro 6 months ago and he conducted a complete neuro exam including a (needle EMG) and it all came back normal. I was diagnosed with BCFS. I am supposed to go back next month for a LAST CHECK. Noticed how I've said last check! I have no signs of weakness and everything is the same as when I first noticed things starting to happen 18 months ago. I do know that It first started in my eyelid and in the webbing of my left hand and moved to other parts of my body and it was accompanied by hot spots. I have one bit of advice to those in here LIVING on this board. Go to the neurologist and get a (NEEDLE EMG)!!!! Stop looking at crap on the internet including the "A" word and driving yourselves insane! If you get the exam and needle emg and the doc says "hey...looks like you have BFS or BCFS mr/mrs patient" then get on with your life! I've only had this for 18 months but I can guarantee you that the folks in here who have had this for years will tell you the same thing. Live your life and deal with the symptoms. Does it suck? absolutely it does and i'm right here with you but you have to move on and get living or this will drive you nuts. My father in law died of *** a year ago this Aug 30th. In his case from the time he was diagnosed he was gone in a year. have personally seen his fasics and it looks nothing like BCFS. Plus the last thing to happen to you is the fasics because the muscle is already toast. And if that has happened to you, you should be in a wheel chair right now.Here is my advice:1. Go see a board certified and highly recommended Neurologist2. Make sure he/she gives you a complete physical and A NEEDLE EMG3. If he/she says you have BFS or BFCS ask to be seen in 6 months for a LAST CHECK4. Upon getting/accepting it as your last check, accept what your neuro has told you and get on with your life!5. Stop going on the *** boards and making yourself think you have the symptoms! Trust me if you had it you would know!6. Get to the gym and make a lifestyle change.7. Come in here only to see if there are advances in medicine or home remedies.8. Get into the mind set that this is BCFS or BFS and deal with it like everyone else in here.
 

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