Twitching All Over: Help Needed

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ShannyB63

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Hi everyone my name is Shannon I'm from Australia, I have been twitching non stop for 2 months now, all over and I do mean all over, have seen three drs who have all said benign twitches....of course I don't believe them and have worked myself into a state over this...just need some reassurance from you guys....I seem to have a lot of my twitches in my calves and behind my knees especially my left side....that doesn't mean it's something really bad does it?I'm so scared, I'm even thinking of paying to see a neurologist because no dr will refer me, it's not something bad if you have more twitches in one spot than another is it.....thanks everyone for listening to my rant I'm just really strung out by this I wish these damm twitches would stop......and like so many people on here I googled didn't I, and you know what came up ....not gonna say it.... :crying: please reassure me it's ok....thanks Shannon
 
Hi Shannon from another aussie twitcher! What you describe is exactly like mine ( and many others here) twitching calves ( 24/7). The first place they started... and are still going 18 months later (as I chat they twitch!) I actually have/have had twitches in most places. The calves are the most common and most regular though. The other come and go- 'hit and run' I think many call them. Although I do get twitches that may hang around in one spot for a bit before they move on. I have not seen anyone beyond the GP and with time I have become more comfortable with that decision,as nothing much has changed beyond the twitching ie all my othert facalties are fine. Time is the real healer here. and you will actually get used to the twitching to a large degree( Although that is probably hard for you to believe right now). I really dont notice the calf ones at all now unless I focus on them (as I am doing now) but they dont bug me like they used to.No, it doesn't mean anything really nasty if you twitch a lot, many of us do!!- sounds like classical BFS and you are not alone with the symptoms you describe!Try and relax, anxiety actually makes them ramp up- a bit of a vicious circle unfortunatley. Anxiety meds have helped me( lexapro) It is mind over body..as someone else on this board quotes.. 'if you dont mind it dont matter'. You will be fine, it will just take some time.cheersRodger
 
Hmmm, why would not 1, not 2, but THREE doctors tell you its benign and refuse to refer to a neurologist? This is a clear sign that the symptoms are benign. Not to mention, the description you gave of the twitchest, etc. fits the BFS mold. You will be fine!
 
Hi Shannon,No, it doesn't mean something is bad if your twitches are mostly in your calves/behind your knees. Many of us here—myself included—twitch mostly in the calves. My calves and the insteps of my feet go 24/7. I understand how you feel, mostly because I was you seven years ago. My anxiety/panic was off the charts when the twitching began because I hadn't googled twitching after they started, I had done it before. I had been feeling out of sorts for months and wondering if I had this, or that. I remember thinking, "oh, at least it's not that cause I don't twitch." Imagine my horror when all of a sudden my body exploded. All said, here I am seven years later (next month) and still twitching all over. I am in better shape now, have put out weight in muscle, and have lost no strength. It's hard for one to accept this is benign at first, but there are thousands of us here that show it is. Mentally it certainly isn't benign, but physically, it is. Random, unrelated story to share with everyone…Recently, I mentioned to another colleague my frustration with my twitching eyelid. She said, "oh, "Melissa" deals with that." Interested to hear what "Melissa" experienced, I struck up a conversation with her. When I told her I was dealing with a persistent eyelid twitch, she said, "oh, I have them all over." My heart began to race cause I had never met anyone face to face that coped with anything like what I had been dealing with. She began describing her ordeal and then I told her I had the same symptoms. She asked me what they (Docs) said it was, and in unison we both said, "benign fasciculation syndrome." She and I bonded immediately. It made me realize that more people might be dealing with this than we might think.Breath deep and be well,Sean
 
Hi Shanny,24/7 calf twitcher here too and have been without a seconds let up for 13 months. There is safety in numbers! Your docs are right not to be worried and a referral to a public nuero without weakness/clinical abnormalities is kinds a waste of the nuero's time. I had to go private...got reassurance for a bout 5 minutes.Take it easy.
 
Hello, Shanny, Sorry you're having to go through this but you're going to be just fine. Add me to the 24/7 calf twitching bunch (with random twitches popping up wherever and whenever). Twelve months in and they're not getting any better but my attitude about them is. At times they've even become a source of amusement for me - "Oh! I didn't realize I could twitch there!" And frankly, I'm glad when I twitch somewhere new. The more widespread the twitching, the more reassured I feel. Try to relax...and accept what your doctors have told you. In time, you'll be more accepting of the twitches too. :) Best wishes, Becky
 
Thanks everyone, I took some Valium and slept for a couple of hours...I do relaxation tapes each morning and night and they help a bit...I'm going to try and calm down about these damm twitches...easier said than done....I honestly get it into my head that the drs are lying to me because they feel sorry for me. :confused: Bit of a kook arent I...thank you for the reassurance I read all the posts and some I find really comforting...others scare me so I try to be careful which ones I pick...so I just have to accept I'm a bfs er like everyone else here....alright that is my new goal....thanks again will talk to you all soon.....best wishes to everyone shannon :)
 
Hey Becky, I just had a heap of those WHAT you can twitch there too!! I really didn't know that those areas can get twitchy too I'm not going to say where because I don't want to offend anyone, but wow this bfs is weird for sure...sorry just had to post and tell you about that...at least I got a laugh out of it....Shan :LOL:
 
Hey ShannonI know exactly how you feel right now. I have been in the same boat as you. I had three doctors that refuse to refer me to a neuro. I paid the neuro myself out of utter panic - and guess what? He didnt refer to an EMG. And after the consultation I felt like I wasted this expensive guys time. The doctors now what to look for. And if they say "benign" all of them - it IS benign. I then have good news and bad news. The good one first: welcome to this club of fellow sufferes. They are all very nice people and support eachother. They live all over the place and do different things in life. But share the symptoms of a very living body.Then the bad news: BFS will most likely never disappear. So its kind of a life-time sentence for you. Hope you will cope...Take careFantasticFurball
 
Thanks fox, Im so glad there are people like you going thru this too.....every day I think should I just pay for the neuro appt. Why can't I just trust what the dr says to me....I will admit I am a bit of a hypochondriac too so of course it's always the worst case scenario with me....sometimes I think I will go mad seriously....that's why I love reading all the posts on here we all seem to have the same things going on, it makes me feel less strange....You know sometimes I get so worked up I start to plan my funeral, horrible things like that go thru my mind somedays....sorry I sound like a right loony don't I.....thank you for responding and I am trying to take it one day at a time and hopefully it's going to get easier......thank you so much shannon :) I can only manage a little smile today feeling a bit low....you will understand.
 
Thanks cenkay, do you ever get to a point when the twitches stop bugging you? I've been having a great day now this one twitch keeps happening behind my knee and it is totally freaking me out :eek: I mean usually I have a thousand twitches a day, but today only two or three behind this knee.....is that bad? I'm so worried about this one stupid spot.....aaaarggghhh I feel like screaming....sorry had to vent....maybe cos I'm focussing on it it's twitching more....I don't know.....Shannon
 
If you have been cleared by three doctors, you need to let it go. I know it's tough when you are twitching all the time, but letting it go is THE BEST THING YOU CAN POSSIBLY DO. After I was cleared by a neuro, I let it go. Two years + later, I still twitch. I have a thumper in my right forearm as we speak. You just gotta learn to live with them and most importantly, don't let anxiety ruin any more days of your life. Sick or healthy, we ALL only have so long on this Earth. Make the most of it and don't let anxiety ruin it.
 
Well put, Jeffrey. If you're going to worry about ALS after being cleared by a doctor then you might as well worry about getting struck by lightning because your chances are even better to get struck by lightning.I've been having weird symptoms for about 7 years now, twitching for over 3.5. I just got done cutting the grass outside (push mower) and my right ankle and calf are going INSANE. My left leg parts are only going moderately insane with twitching.A month from now after I'm not so anxious with a side project I'm working on, I probably will not even be noticing twitches if they're there at all.If you are healthy, you should relax. If your are not healthy, you should relax. So just relax and as Jeffrey put it, enjoy the time you have left on this world whether it's a day or thirty thousand days. The mother in law of a friend of mine at work was diagnosed at 62 with pancreatic cancer a few weeks ago. Without treatment, 2 months to live. With treatment, 9 months to live. She's choosing to fight it as best she can by taking treatment.Choose to be a fighter in sickness or in health.
 
Hi Randy, I had a twitchy eyebrow for 3 weeks early on...just about sent me over the edge I tell you :eek: ...I showed it to my dr and she went it's nothing..and then I stopped thinking about it and it went away...*beep* hey...thanks for the reply....Shan :sick:
 
Thanks Jeffrey, very well put, I remember a quote that I'm going to write down and look at when I get stupid thoughts it's; Don't focus so much on death that you forget to live.Thanks again....shannon
 

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