Seeking Reassurance for Muscle Twitching

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wiftSwiftquill

Active member
Hi everybody,after dealing with muscle twitching for about 4 months and reading through the forum, I have come to a point where I could really need some reassuring words.So, I guess my story has been told over and over again on this board. Anyhow, it's my own story nonetheless, so here it comes:About 4 months ago I started to have these crazy calf twitches right after what I thought was a decent workout.At first, it didn't bother me all that much, I was mildly irritated. But then it wouldn't go away for about two weeks and I grew increasingly worried.After 2 weeks it slowly subsided and I thought "well, just another ridiculous health scare coming and going, like so many others before".Yeah right, I know you have all heard this before, I am health phobic and had my fair share of anxiety trouble in the past, including anxiety episodes triggered by fear of tinnitus and fear of dying after a seemingly endless bout of one infection after the other. Back then, I have seen it all, panic attacks, agoraphobia and above all absolutely excruciating somatic problems, the most terrrible one being absolutely agonizing nausea. Seriously, for months I could hardly walk nor sleep and felt constantly like I was about to throw up, right here, right now. Just, I wouldn't, and this was a constant state, day and night. When I finally got the first relieve in months from a single pill of lorazepam, things got clear in an instant - it was all psychosomatic and I got diagnosed with general anxiety disorder with a strong health focus. Since then, I got therapy and in the beginning also medication, which I got off about a year ago. I thought, I was doing quite well and getting my life back under control. Until - yep, that's where my BFS-story continues - until the twitches came back.That's when I asked Dr. Google, because I was worried out of my mind. Guess what he told me?He said something like this: "As it is a typical symptom, in all likelihood you do have ALS."However, he also said: "There is something which in America is called BFS and which happens to a lot more people than ALS. Unfortunately, BFS is literally unknown in Germany and from my expert judgment you are certainly the exception to the rule and you do have ALS or something similarly nasty."So, that's what shaped my life for the next 4 weeks or so...you all know the story, excatly the same sh.. I have read about in this forum so many times, by now.Then, I had my neuro exam. She did all the neuro tests and ran an EMG on my twitching calves. So, here's what she said: "Ah...can't find anything, that's nothing, those are just benign fasciculations, that's all."And then she sent me away, without further questions or explanations or anything. To her, the whole thing was just not worth talking about.Right then, I was quite relieved and thought, "See, just like everybody says on the forum - officially BFS, nothing bad. And besides, you're well off, since you only have calf twitching."That's how I continued for the next month or so, even though the calf twitches wouldn't go away, seriously, they are 24/7, some small and tickling, some big and jerky and sometimes even right out painful.Nonetheless, I tought that was something I could deal with, I even completed the BFS-survey questionnaire as a clear case of "calf-twitcher".Well, by now that would need some serious updating... Because slowly, I would recognize an occasional twitch here and there, first in my thighs, then in my buttocks. After another couple of weeks I had had the occasional twitch in pretty much any part of my body, legs, arms, torso, hands, neck.Still I soothed myself, thinking "it's just BFS, it's benign...and others are far worse off...". Yeah, I know, that's dingy, calming yourselves with other people's worse fate and I really feel like apologizing to all of you for that.Yet, those are the tricks the mind plays on you...at least my mind on me and I was - in fact I am - really struggling at the moment.You all know what's coming: over the last 4 weeks or so it got worse and worse.By now, I twitch literally everywhere and whenever I think "This is it. Now you can work on getting used to it.", it's not. Some new twitch, some new spot on my body would turn up.By now I have learned what all of you mean by "hot spots", by "pins-and-needles", by "perceived weakness".It just seems to continuosly progress and that's what's really freaking me out bigtime.IS IT EVER GONNA STOP???!!! What's next, how bad can - WILL - it get before I see light at the end of the tunnel?I am about to completely loose faith in my body. So, here's where I could really - REALLY - use some words of reassurance from old timers.I know, I'm one amongst many, but despite all my anxiety therapy and self-reassurance, it's getting out of control.I have read so much on this forum - particularly the thread about reassurance started by christinasgirl123 - and I agree with all of it.Yet, right now I just can't handle it.So, if any of you could spare some words of wisdom it would be greatly welcomed.And in case Chrissi is reading this:Hi, I'm sure many other Germans or Europeans have asked you by now about your doctor and your therapy in Mannheim, and I would like to put my name on the list. I'm from southern Germany and I could go to Mannheim to see your doctor. Just, how do I get an appointment? Do I need an assignment (Ãœberweisung) from my physician or can I just call them up?Do they even accept new patients who have "just benign fasciculations"?Well, in any case thank you so much to Chrissi and all the other posters who share their optimism and positive attitude with fellow BFS-sufferers.Even though my ideal conception of the future would be to get completely rid of all of you and this forum alltogether - just like MarioMasher has with some bluntness pointed out repeatedly - but for the time being I am indeed very grateful for the much needed mental crutch you're offering.Tobes
 
Hello Tobes,actually I have GAD too, however my fears are mostly in other areas of life... But I was for 3 years in speaking therapy related to my GAD and I was 100% SURE I am fine, no one could wish more, but...but in fact I had:-completely rearranged house (all works supervision, money issues etc. were my responsibility and I was working in dusty and noisy environment with all my things rearranged etc.)-my husband took another working assinment and went 600 km off-my daughter had optical migraines scaring me to death-and I was working 14 hours a day without dayoffs for more that a year.BOOM!BFS.Anxiety treatment never can protect you from GAD itself, as it is a kind of organic condition, you would neet to keep an eye on it for your lifelong, it is much like having diabetes, well, maybe with less attention later, when you would be able to cope with fears after years of training and speaking therapy. So do not be surprised with the fact you got it. Even physical stress aftre workloads can cause it.Took another round of anxiety treatment - meds, speaking therapy (prefered both). My own twitches had stopped or subsided SIGNIFICANTLY after approx. 4 month from the beginning. I still have them - few in a day, yesterday in throat for example, but it does not kill me.And yes, initially it would be a real circus, BArnum&Bayley - twitch herer, then there, then GERD would come with nasty lump in the throat or coughing, or pains in the chest, then excersise intolerance, then parestesias... but all those macabres should subside since you undertand truly they are harmless. Annoying, eys, but essentially harmless.
 
Hey Gracely,thanks for your quick reply! :) Yes, I have kind of come to terms with the fact that GAD will never completely go away.But I also have kind of felt that I had it contained by now, being aware and alert and mindful and everything and that I would know what to do when trouble showed up again.But now my body is in a free-fall twitching spiral which leaves me obsessing about all the catastrophic things to come.Well, catastrophizing is actually what I have really worked hard at and I thought with rather good success...but BFS - and particularly the fact that it keeps progressing on and on - really pulled the plug out of painfully acquired cognitive self-containment.Well, at least my biography allows for easier acceptance of a "psychosomatic" problem. In fact, I haven't really obsessed about ALS all that long. But BFS is now scary enough just by itself.And as BFS just doesn't seem to give it a rest and at least stay the way it is without worsening, I have a really hard time containing negative thoughts and fears.So, I'm working on it and a little reassurance from people who know it all and have been there can really help.So, thanks again. :D)
 
I had it also - hard times on every new symptome. As most of us, I was listening to my voice - isn't it sounds hoarse? Do I stumble over words - until I found just two days ago that being nervous - just nervous! - causes my voice to sound really cracky :) Every new twtich still scares me a bit (like twitches in the lower front throat area or true tongue twitches I had recently... And it really drives you crazy exactly because the body seems to get out of control...But I have an excellent speaking therapists so we spent few hours talking about what is importance of body control, how often I let my body to rest, if I ever was sensitive to my own body... it was very very interesting talk... At least I found my demands were a bit too high - I wished to controll everything and give very little care instead... I am still rather a severe master to my body than a friend, but even a bit of good attention made a miracle in return - at least I do not have constant twitches any more.I never would be the same as before twitching, pains, cold and excersise intolerance (I had to run 100m today - holy *beep*, I can not, just can not do it) - but at least I am much more free of fears and negative thought than 10 month ago when it all had started.So I wish you to work on this successfully. We GAD people are in fact very strong and full of resources (because GAD is ususally accompained with high level of adrenaline and - surprise! - sometimes high dophamine too, so we might be very energetic and positive), we just need to reveal them from the press of fears.HugsYulia
 
Tobes, The time when you fell that the twitching is spreading all over is not easy. In my case it started in the left hand, then left arm, then shoulder... now it is a circus. Luckily my fasciculations doesn’t stay long in one spot and quickly moves to another muscle. Even the scalp joins the party. But it can go far from this. There are calm days and busy days. BFS can be scary because it changes from time to time. Besides twitching, there can be pain, tremor, cramps, parestesia, jerking, buzzing etc. When you think you are in peace with it, a now spot fires up. At this moment I am in the pain+twitching+buzzing phase. I am quite sure that my symptoms are some sort of somatization disorder linked to years of anxiety and depression. From what you describe, it can also fit your case.
 
Yup, you sound just like the rest of us on here.. plus you had an EMG! I haven't even had one of those yet!! Been twitching for 9 months now!! Being upset or scared makes it way worse.. After a while you start to get used to it & at times you even forget... ;) Welcome!!
 
Hi Missi and Jorge,thanks a lot for your warm words, they are greatly appreciated! :D) Yeah, I am well aware that my story reads just like so many other stories on the board ...... but reading about it and then slowly experiencing the progression of all those symptoms in flesh an blood are quite two different animals, alltogether!You're not telling me stuff I hadn't known before...but, man, it's good to read it from somebody else!!From my story you can believe me that I have seen quite a bit of similar trouble in my life...but man, this BFS in one heck of a crazy ride!!!I really do hope in the not so far future I will be one of the guys laughing at BFS and telling everybody else to just snap the f... out of it and that it's just no big deal.BUT: not yet, I'm afraid.And I mean that literally: I am afraid.So yeah, I kind of buy into what many oldtimers say and what MarioMasher strongly advocates - that it is indeed some kind of somatization problem.Apart from making totally sense to me, it really fits into my biography.Still, the good old relaxation techniques just don''t make it go away...yet, I hope.Next thing on the list to try is meditiation, MBSR, to be exact. That is "mindfulness-based stress reduction", a medical meditation program which is scientifically quite well examined without the need of esoteric ideas.That' kind of important for me, as I am a scientist and have a hard time with all kinds of esoteric therapies. I hope I get a spot in the program starting next month. So, I guess others have reported on their experiences on all sorts of meditation or relaxation courses, but I thought maybe I would contribute a little diary on the forum.So, let' see if I get in...and if that does something good to my little BFS-problem...So, I want to finish with a little self-reassurance: HEADS UP, EVERYBODY - others have succesfully dealt with BFS before, ALL OF US can do it, just as well!!There just got to be a way!! :D)
 
Well said Tobes! You're a great new member!!! I know, relaxing is easier said than done, plus that's when you notice the twitches more!! Ahhh!! ;) I'm twitching right now!! Lol This bfs crap can turn a sane person mad!!!
 
Hey Tobes,I´m not a lot around here this time but I read your post and i want to tell you that my story perfectly fit yours. I´m a healthphobic since a few years and someday after i read about twitches in the internet ( i don´t have them before reading something about it) "BAM" BFS set in. I´m from austria so i don´t live very far away from you and speak Emilyomouse too..;) I´m 9 months into this and everything i could tell you is that if you start to get used to it, it will get better (that´s my point of view) like mariomangler or johnny wrote in most of their posts.A few things that really help me are: - Get out with your friends, very important for me, when i´m out with mine i forget the twitches- Get a beer in the evening i you have problems with your twitching (But don´t start drinking too much...), it helps me most of the time- Try meditation- Workout is a big help for me too, maybe you try itThe last one: Try not to think about it. (easier said than done i know..xD)Maybe this helps you, and REMEMBER my story nearly perfectly fits yours. I also have a lot of calf twitching and pop ups all over the body, i think i need a pop up blocker like in google chrome..xDMike
 
Hey Missi and Mike,thanks a lot for your answers, they are well received and I really do apppreciate them!! :) Yeah, I have learned and sproardically used relaxation techniques in the past, but it's just like you said, Missi...Aaaaargh!!...when trying to calm down and put my attention to muscle relaxation, that's exactly when I feel the twitches twice as much and they become particularly bothersome!!!So, why Meditation, then?Well, I figure it's something new I haven't tried, yet. And it's a program with fixed schedule and group and instuctor support.Yes, Mike, sounds very much like me, just that I didn't know that twitching could happen to me until it actually did.I figure the onset had to do with a tick bite I had just around the time of onset.Yeah, I know, could be lyme disease. But I got the antibiotics treatment and I got tested and apparently there's nothing there.So, probably it had more to do with fear from lyme diesease...however, others have suggested that some event like an infection or illness might be at the heart of the onset of BFS, so that might just as well fit with my story.Nonetheless, I feel that my prolongued twitching has much more to do with my anxiety problem...or at least that's my big hope, because I just know for a fact that anxiety issus can be tackled!!So, thanks again and HEADS UP!...and in good old Emilyomouse: Wär' doch gelacht wenn man damit nicht irgenwie fertig wird!!!
 

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