Hi, I am new to this and would really appreciate some advice, I went in holiday to Spain the beginning of June and whilst relaxing I noticed my legs twitching, since then they have been non stop 24/7, they twitch in my calves,knee and thighs, some times I can see them and some times I can just feel them, they ache in the day and the twitching happens if I'm moving and when I'm still, they don't always stop when I move them. I sometimes get random twitching in other places like my eye, tummy, bottom etc but nothing like my legs. I went to the drs and they weren't worried at all where as I've googled twitching and am now stressing that it might be ALS, the dr said it was probably bfs and I am an anxious person any way, I am a 26 year old female and would greatly appreciate your advice/ experience, many thanks, Amy x
Need Advice on Twitching Legs
- Thread starter AmyLou29
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SecretAgent007
Well-known member
Any muscle, anywhere in your body, any time, in any pattern, any frequency, and at any level of intensity is all normal for BFS. This forum is a treasure trove of people experiences so use it wisely. The very second you feel a fear or a worry starting to ramp up tell yourself (out loud if you have to) that you are not going to go there. You will find a strong corrlelation to the level of anxiety you feel with the severity of your symptoms. The sooner you learn to change your methods of dealing with it, the better you will feel.
I'm definitely going to try the positive thinking route, it's hard to put it out of your mind though, every time I relax I can feel the twitches and it sparks my anxiety. Another question ( sorry to be a pain) is it normal that when I shake or move a leg the twitching doesn't always stop? I've read a post that says normally with bfs the twitching stops with movement but I can feel mine all the time, when I'm sitting, standing, walking etc, I don't seem to have had a break from them for the last 3 months. I also get lots of aching and stiff muscles, thanks again
SecretAgent007
Well-known member
I used to have a constant eyelid twitch that would persist even if I held my finger on the very spot that was constant. BFS comes in all varieties and although everybody experiences it slightly different from each other there are enough people here that you will always find a group who have exactly what you describe. Persistence pays off on positive thinking. It takes a while to turn a large ship around with a small rudder, but eventually you'll notice your course changing if you consistently work at it. You will never find a book in the 'self help' section of the book store called 'how to overcome adversity through anxiety, fear, and worry.' You will have to actively work to change though, because it is your current method of dealing with anxiety that brought you to where you are now. Continuing to do the same thing and expect different results will be an exercise in futility. Again, I prefer meditation. I was new to it but found it very beneficial to changing my ways.
I've just been reading the blog of someone who has been diagnosed with als, she said the second neurologist she saw looked at her tounge as it was twitching and then put his hands on her thighs and said he was feeling for twitches.This worries me as if someone put there hands on my thighs they would definitely feel twitching, I also didn't think als was wide spread hoow ever this lady was twitching in her legs and tounge? Any replies would be greatly appreciated x
Amylou,If a neurologist did that to me, I would fail both tests. Tongue twitching plus nonstop thigh twitching all over both thighs. I have BFS. The Mayo Clinic did just what you said to me, they put their hands all over my legs to feel for twitches. That doesn't mean that if they felt them I would be diagnosed with ALS. -Matt
I think for the lady with ALS doctor also had found many other abnormalities beside twitching tongue and twitches in the tighs...as Matt said, many of us can fail that 'test'. I put it in quotes because it is generally not a neurological test because full set of testing involves reflex checks (and believe me they could be very special), test of ability to coordinate your body movements, all those funny things like 'follow this little hammer by your eyes', "close your eyes and touch your nose by the finger" etc. etc., strenght tests, etc.Our statistics user KurtBohan actually has very clear stats in his blog (the link is in the post called 'BFS survey') saying that over 60% of fellows have twitches in the lower legs or in the tighs. That was derived on the basis of voluntarily survey we are taking. So having twitches in the leg is not dangerous at all. Vice versa, reading blogs of people with severe disorders is dangerous becasue without full picture you can really scare yourself whch does not help to get better. so fully agree with Matt.
Thank you both for your reply, I am new to bfs and finding all of these symptoms strange and a bit worrying, I'm sorry for mentioning the ALS thing, I definitely don't want to add to any ones anxiety and I really don't know what I'm talking about, that's why I joined, to learn what is normal for bfs, Thanks again both, Amy x
Hi Amy,from the point of symptomes BFS is a real circus 
that is why it is different from other disorders and that is why it causes such a real mess.it involves huge bunch of autonomous system disregulation symptomes: hot and cold flushes, hear palpitations. tintinnus, verigo, circulatory troubles causing sweating of limbs, cold hand /legs, feeling of fever without fever etc. Ocular migarines are also happened with us.BFS involves sensory neuropathy-like symptomes: pins and needles, feeling of cold/hot/wet patches on the limited areas of the skin, stabbing pain sensation. bugs crawling sensationsit includes cramps (often quite persistent and painful), 'dead' or 'asleep" limbs, especially at the night time, stiff muscles, central sleepong apnoe (inability to breath deliberately when getting asleep) due to low CO2 blood gases, tightness in the chest, feeling of lack of the air to breat.We also suffer from esophagal spasms and throat spasms causing persistent cough, globus, clicking sounds in the throat, feeling of difficult swallowing, etc.We suffer from urticaria or other forms of itching without clear reasons. Our joints click (every normal joint click but ours seem to do it louder and more frequent).An of course we have twithces - fine and coarse, in ripples, in hotspots, those we can see but not feel and those we can feel but not see. We feel buzzing, tremosr, electrical shocks, jerks. We feel fatigue, pain in joints and muscles, we become excercise intolerant and sometimes even can not hold a phone wihtout a pain.I think Chrissi is a champion on making a system of her symptomes and she counted about 120 of them or so. There should be somwherer here a link to her post with symptomes or you can ask her in the private message about a link.so you can see that some of symptomes amy mimic serious disorders - from lung cancer to CHF, from MND to encephalitis, but usually we have those symptomes all mixed toghether and so mild that for any doctor it is a good reasin to say that this is something unrelated to severe diagnosis. Most important is that we never have organic changes necessarily involved in severe disorders which BFS is mimicking out - neither on ECG, EMG, EEG, MRI, CT etc. Our typical bloodwork results are low blood CO2, very low B12, low D vitamine and usually nothing more.As for quitting from ALS sites, we all run through that (almost all) and our common consensus is that for us usually it is unncecessary reading because it enriches us with parital pictures or even with unrelated stories (saying a bit overexpressing, but stories like: "once I had a sneezing and in few years I got ALS, probably sneezing is an early sign"), and please consdier that in acute fear phase you are not critical to what do you read (especially if it is a scary reading), so it is just for your own benefit were our words about harmful effect of ALS sites for people with BFS.so welcome here and do not hesitate to ask questions.regardsYulia
that is why it is different from other disorders and that is why it causes such a real mess.it involves huge bunch of autonomous system disregulation symptomes: hot and cold flushes, hear palpitations. tintinnus, verigo, circulatory troubles causing sweating of limbs, cold hand /legs, feeling of fever without fever etc. Ocular migarines are also happened with us.BFS involves sensory neuropathy-like symptomes: pins and needles, feeling of cold/hot/wet patches on the limited areas of the skin, stabbing pain sensation. bugs crawling sensationsit includes cramps (often quite persistent and painful), 'dead' or 'asleep" limbs, especially at the night time, stiff muscles, central sleepong apnoe (inability to breath deliberately when getting asleep) due to low CO2 blood gases, tightness in the chest, feeling of lack of the air to breat.We also suffer from esophagal spasms and throat spasms causing persistent cough, globus, clicking sounds in the throat, feeling of difficult swallowing, etc.We suffer from urticaria or other forms of itching without clear reasons. Our joints click (every normal joint click but ours seem to do it louder and more frequent).An of course we have twithces - fine and coarse, in ripples, in hotspots, those we can see but not feel and those we can feel but not see. We feel buzzing, tremosr, electrical shocks, jerks. We feel fatigue, pain in joints and muscles, we become excercise intolerant and sometimes even can not hold a phone wihtout a pain.I think Chrissi is a champion on making a system of her symptomes and she counted about 120 of them or so. There should be somwherer here a link to her post with symptomes or you can ask her in the private message about a link.so you can see that some of symptomes amy mimic serious disorders - from lung cancer to CHF, from MND to encephalitis, but usually we have those symptomes all mixed toghether and so mild that for any doctor it is a good reasin to say that this is something unrelated to severe diagnosis. Most important is that we never have organic changes necessarily involved in severe disorders which BFS is mimicking out - neither on ECG, EMG, EEG, MRI, CT etc. Our typical bloodwork results are low blood CO2, very low B12, low D vitamine and usually nothing more.As for quitting from ALS sites, we all run through that (almost all) and our common consensus is that for us usually it is unncecessary reading because it enriches us with parital pictures or even with unrelated stories (saying a bit overexpressing, but stories like: "once I had a sneezing and in few years I got ALS, probably sneezing is an early sign"), and please consdier that in acute fear phase you are not critical to what do you read (especially if it is a scary reading), so it is just for your own benefit were our words about harmful effect of ALS sites for people with BFS.so welcome here and do not hesitate to ask questions.regardsYuliaAmy, I also had started with only twitches, and then I got many other issues so do not worry 
you may or may not experience all that circus I described above.For distinction between BFS and other disorders it is important to see if the "external" symptomes like twitches are combined with some other signs, for example, if clinical weaknes is associated, if theree are warning signs on EMG, etc. No matter if you have only one symptom or not at the time.Twitches in the lower legs are one of the most common among general population so ypu really should not worry if you do not have any other motor troubles.Up to now for me your condition is consistent with BFS because you have only twitches and nothing more - no clinical weakness, no loss of function. All your description is common for other fellows here. Plus remember that anxious people are more prone to twitches than other. That is why your doctors were not worried, and that is why you should not google and confuse yourself with dreadful disorders
you may or may not experience all that circus I described above.For distinction between BFS and other disorders it is important to see if the "external" symptomes like twitches are combined with some other signs, for example, if clinical weaknes is associated, if theree are warning signs on EMG, etc. No matter if you have only one symptom or not at the time.Twitches in the lower legs are one of the most common among general population so ypu really should not worry if you do not have any other motor troubles.Up to now for me your condition is consistent with BFS because you have only twitches and nothing more - no clinical weakness, no loss of function. All your description is common for other fellows here. Plus remember that anxious people are more prone to twitches than other. That is why your doctors were not worried, and that is why you should not google and confuse yourself with dreadful disorders ionyZarrion
Well-known member
You absolutely can still have bfs. I, like you, twotch 24/7 non stop in my legs and have been for 3 years plus and have no other abnormal clinical findings. Its a hell of a weird thing but the best thing you can do is just try to ignore it and move on with your life asap.Darr
Hi, my legs are still aching, calfs especially, they hurt when I walk and go up stairs etc. I can move them normally but they hurt, and of course they are still twitching away. Is this bfs? I don't know why my legs would hurt as I haven't done any extra exercise. I'm getting anxious about this and starting to feel the worry of THAT horrible disease again, any feed back would be very greatly appreciated. Thanks x
graysondownsouth
Member
Hi! Normal blood work-ups do not eliminate BFS. Mine was normal. I'm 65 & I I have been twiching all over my body for over two years starting with simple calf twitches. I also get those sometimes serious muscle cramps in sometimes weird places. So long as you just twitch & you have no decrease/loss of muscle function, it is probably a form of BFS. After visiting two neuro's, I believe they know very little about BFS as they rightly are more concerned with the life threatening diseases like ALS. From reading here, BFS symptoms seem to come and go in intensity over time. Some people may find them to totally disappear but others not. I hope this helps some. This forum helped keep me sane when my local neuro gave me a 50-50 chance at ALS back in fall 2011.