New Here: Intense Vibrations in Arm and Leg

Hi There-I just wanted to chime in since I have had BFS/BCFS (twitching/cramps) for a little over 6 years now. I can tell you the first two years were the worst with my cramps. If I would point my toes my foot would cramp, if I would do any type of situp my abs would cramp up so bad I would lay in a ball on the ground clenching my teeth. While I still twitch all over, my ab cramps are completely gone and I can flex my foot without getting a cramp. When it comes to buzzing I have had it in my legs and expecially my feet. My arms go numb when I sleep (due to my ulnar nerves in my elbows haiving issues) and I have other weird issues with numbness too. So I hope that in your journey with BFS you can understand that your symptoms will change again and again. There is no set pattern for these things, and even now I have things happen that never did. The neurologists (3) did my EMG's, saw my visible fasciulations and tremors. Apparently regardless of how much these symptoms suck, some people just get them. Mine come and go but it seems it will be a lifetime thing for me now. Best of luck! Sean

Thanks Sean. What worries me the most is that everything mostly happens on one side, my right side but I also have this weird feeling/ trembling on both lower legs . Can't explain it but when I have pants on, the trembling can be felt against my pants if that makes sense. Also bothersome is on the same side of my symptoms, since this all began back in November my upper eyelid is lower than my right. Not the lid directly above the eye but the one beneath my brow and as we speak, the bottom of my right foot (the ball) is cramping and so is the back of my right calf. Have had a negative mri and passed every neurological exam by sr.'s. I have seen so many neurologists and am going back in a couple weeks to see one of the best at Robert woods Johnson in nj. Just want some answers but again, thanks everyone.

One-sidedness is quite common in BFS. Many people on here get a major part of their symptoms on one side. Hmm, I will look up that poll for U....my symptoms were mostly stuck to one side, my right one. The trembling can be seen by clothes and most likely your partner can feel it if she places her hand there. I had nights I was vibrating so bad I woke hubby up. Other nights I had myoclonic jerks that were so bad I slapped him and gave im bruises. all during sleep. I just called it the revenge for is permanent snorring Darylder, I know it is so damned hard, and I know the journey you are on: to anxiety hell and back. This stuff is scary and mind-wrecking, but after hearing your story and yours symptoms please be totally reassured that this is not ALS. When I was at the point you are now, I had contact with a lot of oldtrimers here and all those symptoms were soooo common. The trembling, the numbness, the felt weakness, this freaky half-dead-feeling arm, my legs shaking and bouncing.....but at one point I started to trust them and their words, which was the starting point to my recovery. I am still not completely healed, I get little flare ups if I treat my body "wrong" and I am facing the fact that this will maybe be my lifelong partner to tell me "stop" whenever I drive my nerve system to overdrive. ALS does not start with a complete body freakout. It is weakness that is suddenly there in a limb, no warning.

Internal vibrations I also have, so nothing to worry about.

Well went to a top Neuro at Robert Woods Johnson and he said zilch chance of ALS or MS. However, what do I do now that I still have these symptoms? Right leg feels numb like it is falling asleep, bottom of right foot hurts, still internal tremors in right arm. . .Thinking about going to Mayo Clinic? Am I wasting my time and money?

Whether you go to Mayo is your decision but as you said you already went to a top neuro. In terms of your symptoms you have to give it time. This is not something that will make you feel better overnight. A wise use of your time and money might be seeing a psychotherapist. I went to one for a while and it was helpful in terms of getting my anxiety under control.

Thanks. Already went to one and didn't help a bit. Maybe the wrong one, I don't know, however, for the last two months, my overall mental health has been so much better except for some brief moments like this where I worry. I do believe the neuro now that it is most likely not those two serious diseases, however, the not knowing is what is bothersome. Not one doctor has ever said BFS even though I seem to have the symptoms that everyone talks about, so again, am at a loss. Thanks again for your input. . .it is much appreciated.

Hi darylder,good to see you are still more or less Ok,and what I can tell you on my own experience is that persistent numbness in the arm or leg (especially if it is unilateral) could be just a sign on imperfect blood circulation caused by your spinal arteries entrapment inside the neck vertebrae. We all have inherited asymmetry of circulation, but in certain people it causes more effect than in other. I had quite evident unilateral hand and leg numbness, unilateral ankle swelling (dreadful one!) due to need to sit for 10-12 hours typing typing typing. Sometimes I also felt unilatheral fascial numbness (however just slight compared to hand problems). My right arm was all much colder then left and evidently numb. So was my right leg. I also have pains in the arch of the right foot. I had and I have cramps (especially in summer) - just because I have only 4 cups of tea per day (low hydration). As soon as I start to drink more water, I am getting much better with cramps.I managed this numbness isue with all over the body massage and sertain drugs improving micro cirulation in the brain (3 month in a very high dosage by prescription). In order to be diagnosed I went thrugh so called Doppler sonography of neck and brain arteries. Neuros usually consider this test as not very valid, but still suggestive enough for certain imbalance of the brain blood supply.I do not have those symptoms already for a few years and I am happy with that (instead i got BFS - which I am not happy with) but please consider your persistent unilateral numbness could be also quite a benign condition. Check your neck condition with massage therapist - probably it is strained and causes this blood cirulation disruption. This, as I told, causes numbness, pins and needles, bad lymph circulation, edema (swelling) - that is why your eyelid on affected part might be slightly swollen also.I also had problems with coming upstairs/downstairs (stumbling) when I was quite young (26-28 years) when I was working on greenfield plant construction site. And do you know what my boss said spotting me stumbling upstirs alike an old lady: 'Girl, you are too tired'. And he was right (we all were working extra hours and pressed to start the plant timely).And please also remeber that widespread fascics without clinical weakness (not numbness but complete inability to use the whole limb or part of its muscle) are ususally of benign anxiety or overexertion related nature. Or related to tooooo little of exercises (like in my case).my bset regardsYulia

Thank you for taking the time to read what I have written and share your similar experiences. My right hand/arm have been very numb the last couple of days and I truly believe I have BFS since I have had twitching in random spots on both legs very distinct the last two days (at one point, while lying face down sleeping, my whole lower body jerked). I am trying to just live life and realize whatever is to be, will be.

have had all of these symptoms, including tripping at times, etc. Internal buzzing has been a big deal for me. Just wanted to let everyone know, my first neuro appointment for this was in 1973--38 years ago. I'm still here, upright & have bfs. Please try not to waste time worrying. From what I've heard over the years, a good neuro can pretty much spot a serious problem w/o even testing....

hidon't worry about that vibration, I have them in my whole body + paresthesia + twich + cramp! 2 clinical, 2 emg, I'm healthy and stronger like a lion ! all that crapy sensation are more common in bfs ! you need to drink more water and relax, anxiety make your twitches worse. Bfs its impressive but benign !take care !

I like your response. . .short and sweet but right to the point!!!

I am really hoping someone with knowledge can help me. I was doing great accepting my internal vibrations thanks to your website. However, just now, I felt a vibration and looked down at my arm and saw it right above my elbow. I am so scared right now and can't keep living like this with this fear. Even though I have read these forums over and over again, if anyone can give me some reassurance why it isnt ***, I would so much appreciate it. I am willing to answer any questions to help with the advice. Sadly, my son just came home from college, it is mother's day weekend, and now I am a mess. I have the right eyelid that twitches off and on, internal quivering on my upper right arm and both legs and all this started suddenly in November when I was awakened two nights with violent internal vibrations and thought the bed was shaking. I have had two MRI's, seen 6 neurologists but not one has suggested an EMG. Now that I can actually see the thumping, does that mean their diagnosis would change? Please help. . .I am so scared and sad by this.

Darylder,visible twitches are really wery common, believe me! there are tons of member's videos here showing visible twitches, worm-like twithces, hotspots etc. Usually I can see how my own eyelid is jerking horizontally, or my thenar muscle twitches. My daughter has visible elbow twithces if very depressed and stressed. it is so common, and your neuros did not prescribe you EMG just because they did not find eny evident clinicl weakness in your body.Once again, until you could move your hand delibrately, even with percieved weakness, if any, until you have voluntary control over your muscles and can command them and they will do what you command - you do not have anything sisnster, no matter if it is fine vibration, buzzing, thrumping, jerks or cramps whatever.

Thank you Gracely. I am trying so hard to get a grip on things and think practically but sometimes when something new happens, I feel this overwhelming doom. Again, no doctor has ever said that it is BFS. Do most people in this forum get a diagnosis or is it like me where I have to figure it out for myself? Right now, when I sit still, I just feel this vibrating in my arm, legs and I just want it to go away. I just wonder if the dr.'s diagnosis would change now that I have felt and seen this twitch? I have always felt the internal vibrations but now this is different. Is there a list somewhere of what isn't an *** twitch? I am so bad at navigating on the computer and know there are so many knowledgeable people on this website.

No, you cannot distinguish between an ALS and a BFS twitch by its appearance. It is never the twitch, it is the clinical that makes the difference.

my diagnosis is benign myoclonia I think just because BFS is seldom mentioned outside Western medical sources. I know that even Western docs not always are aware about such diagnosis because it is relatively new I mean it was not so long ago when the docs combined all picture (widespread twithces, percieved weakness, strange motional and sensory issues etc etc.) into a syndrom and named it BFS.here is a direct link to great compilation called "BFS in a nutshell" made by Alonzo Jhonson who is one of the founders and moderators fo this site.this is wery clear explanation WHY our syndrome is not ALS and WHAT is actually ALS twitches.Saying shortly, NONE of the twithces (NONE!!!! Wheter it is bussing, thrumping, jolts, jerks, fine vibrations, visible or invisible, crampy or not crampy, trembilng,shaking - wahtever) IS NOT A SIGN OF ALS unless the twitiching muscle is not severly disabled and absolutely unable to move at your command.read it and I hope you will get a bit of piece of mind wich is so necessary for us.I know that with a colledge age children it is hard to keep regular hours but try to orgnaize your life as much scheduled as possible, at least for certain time. Try to eat frequently, drink enough water, try to quit from any exitation habits like smoking, coffee, strong tea, sleep not less then 7-8hours (take sleeping meds if necessary). In my case and in many many many cases here it was a great help.Wish you good luckyulia

Johnny, just want you to know that your post is one that I read over and over when I start to get nervous again. Thank you

You all seem to be doing so well. How and when will I get to the point where I don't think about a serious mnd at least every hour? When will I stop thinking that I can't live like this? I have these internal remora in my right arm and both legs almost constantly now and random muscle spasms in both legs and arms. Everyone here seems to have gotten a grip in this awful worry but I cannot? I have yet another neuro appt next week...do tired of running from dr to dr but not one has even suggested an eng. so tired of hearing that it could be anxiety when it is the symptoms causing the anxiety. Want this to just end...

Darylder,so sad to see you so depressed... I only can tell that living with BFS takes time and patience, and, of course, anxiety has to be treated too. Sometimes we can overcome it, but very often (especially in case of people prone to BFS) it is already a part of our nature and body chemistry and we need really a kind of efforts to decrease it. I mean medical efforts, not just decision saying: "I WOULD NOT BE ANXIOUS ABOUT THAT". Decisions are good thing but they need strong supplement.I can tell that internal tremors and pains are also well known for me too. But I am an old anxiety fighter so I know a bit how to live with it. It is hards but still possible.I can tell you also that on my own onset I was thinking of ALS every hour too. I even told to my daughter and husband that I feel so bad (and I was) that maybe it is a fatal MND etc. It was this winter, and I was barely able to hold a grip on my home keys (and only recently I had read the article about hypermobility syndrome and know that muscle weakness increased on cold is particularly common for Ellers-Danlos type of HMS which is my case). I was very fatigued, twitching all over, had instable walk feelings, hand numbness all that stuff...But everybody from my neuro to people and their stories here were telling me that this is NOT ALS or other MND. So I cut off my job load, implemented some antianxiety meds, a hours schedule - and now in 7 month I feel really better. yes I am still twithcing every day, but not so vigorously as before. Yes my hands DO NOT tolerate cold water and even the ambient air temperature below 20 deg C makes me numb. I have cramps (always worse in Summer time). But I am alive... just because I did something to stop my anxiety. I was also very very frightened too. But gradually, with meds and lifestyle change, it subsided.I believe you have to follow this way to. Cut whatever drives you tired as much as possible (homeworks, job loads, etc - if possible). Use some medication and/or meditation - whatever is better for you. Try to sleep more -even if you need pills (Anxious people might sleep for 10 hours in a row but in fact be in rest for 2-3 hours only, because they have severe disturbance of sleeping process) - and gradually you will become better, I am quite sure.