I've not had a single day (or minute) off since I started twitching two months ago. As I type this, I have a constant twitch in the instep of my right foot (never stops) the outstep of my left foot, behind my right shoulder, and in my left and right elbow (inside) and when I pause from typing, I'll also have one in my fingers. There is never a second without a twitch and many of them are alllllll the time, everyone here on the boards (I was reading till 3AM, go figure) has hit and run type, or the "constant" they describe is only for a day or so. I twitch EVERYWHERE and ALL DAY and it hurts and is annoying. It's getting progressively worse. I still have my strength, but I'm going batty out of my mind. My EMG on July 16th was lower only, mostly in my right leg with 2 pokes on my left leg/foot. I feel like he should have done something more than what he did. So far, on this wonderful website, I've found no one with a story like mine. I twitch in every part of my body, lip, eye, fingers, elbows, shoulders, butt, back, arms, wrist. What else should I request from the doctor? Should I even call him again since it really doesn't matter what it is until (if) it kills me?I'm really needing a brief period of non-twitching. perhaps I'll find someone on the street to give me a joint and buy a bottle of jaeger. I have a non-stress life, I don't work, my spouse makes six figures, I have half grown well behaved 4.0 GPA kids and a beautiful new home. My life is easy, so I can't contribute this $h*t to stress at all. I can't find a connection to why it's happening AT ALL.Do we have a good statistical calculation for how many BFSers commit suicide because they can't handle the constant bodywide symptoms anymore?
Living with Constant Twitching
- Thread starter tazolamer
- Start date
BarbiePetals
Well-known member
Blee,The sides of my feet go all the time. They never really stop. Go back and read my posts. I also have ones going off somewhere at all times. I even get them inside my ear and scalp. It's all part of this crazy syndrome. The only other test you could possibly ask for is the VGKC antibody test. However, it only shows up postive in about 40% of people with peripheral nerve hyperxcitability. There are people on here who have twitches going off all the time. Read 123LostSoul456s posts. Also, a member named Sueboy. Her feet never stop either. I don't know what else to say except you are not alone. We all twitch like crazy here.PLEASE DO NOT talk about sucicide for a bengin problem.
JoggingCub
Well-known member
Hi Brandy, I read from your posts that your neuro did not pick up a twitch on the EMG, but did witness one. Have your twitches gotten progressively worse since then? Has your neuro looked for other reasons for your twitching other than electrolytes and the EMG/NCS? Have you hade the 40 or so blood vials drawn for heavy metal posioning, lyme, etc. and a head MRI.I have never had a painful twitch; annoying, and fear causing, but never painful. Is there any activity that makes your twitches stop, anytime I am active I never notice my twitches or they stop, its only when I am resting or sitting. RB
B- its not just a benign condition, its a constant something on top of already having congestive heart failure and kidney disease from auto immune issues since i was 15.however id never commit suicide, i was just wondering if twitching to death had ever caused someone to go that bizerkRB, the twitches have definitely gotten worse and in more places, neuro is the head of the okc als\mnd clinic, stuck me 6 times in about 15 minutes and then declared it benign. said i didnt need any follow ups.
BarbiePetals
Well-known member
I also have asthma and thyroid autoimmune problems so I know what's its like to have more than 1 thing wrong. It's very, very hard but the way I look at it, I have no choice but just to accpet it. I already let it take away a year of my life and I won't let it take away anymore. I've had all the tests and just have to trust my doctor that it is benign. Your feet twitching video looks just like my feet if that gives you any comfort.
NervousnessNoMore
Well-known member
My biggest suggestion to you is you need to find soemthing to do. Since it says ou don't work, find a hobby or something to occupy your time. Also I tell myself many times a day now that twitching without weakness means nothing, and every minute you spend worrying about what could be is a minute wasted on the present. that does not mean that I can even make it through one day without anxiety about this, but over the 4 months my head is slowly coming together. I have bad days (the last 2 days were bad), but I have more good than bad now. I can tell you that I had Bell's Palsy which seemed to trigger this. I now have hemifacial spasms in the lft side of my face. They are not constant, but they are frequent. The nerves in my face likely did not heal right, and now I am stuck with that. but again I have experienced TRUE paralysis with the palsy, and it is not fun. Any day that isn't like that is a good day. I just have to remind myself of that sometimes. I do have random hit and run twtiches everywhere in my body now too. Again I would find something you like to do and get out and do it!
MovingLess
Active member
Blee, do you honestly think that you are the only one who has constant twitching? There hasn't been a moment in any one day since September of 09 that I haven't twitched somewhere. There are LARGE numbers of people on here who have 24/7 twitching. I too have multiple medical problems besides BFS. I went to a very respected MND guy in T-town he poked me about 10 times and said your fine. I promise you this. You say you don't have stress in your life, go back and read your post. If you don't have medical stress/anxiety then I don't know who does. Your story sounds, in fact, very similar to my own. Maybe it's this darn OK heat 
) In any case, you sound like someone who possibly has some time on their hands, which leads to an idle mind... Idle minds tend to wander. My personal example of this is my sister, same situation as you, nothing and I mean nothing in life to be stressed about. She started having shortness of breath, chest pain, dizziness and a host of other symptoms. She went through every doctor within a 50 mile radius. She passed every test of every kind known to man. That was not good enough for her. She ends up talking a friend into taking her to Mayo in Minnesota... THREE TIMES. The last time cost her over $9,000 because her insurance wouldn't pay for it again. In any case EVERY doctor that she saw starting with her GP diagnosed her with the same thing, medical anxiety. She still thinks she is going to die any time now. It sounds like you have gone through a lot medically, so have I. Real things. Life threatening things. For some reason, my hardest battle has been BFS. We as normal everyday folks, have no option other than to trust the doctors who KNOW what they are looking for. As I have sat here trying to think of what to say to you, I have twitched in the following places, eye, neck, bicep, tricep, thigh, glute, and the ever present hand/palm. Blee, you are not alone, there are many...many, of us out here just like you. You owe it to yourself and your family to make everyday better than the last. I have wasted an entire year of my life absolutely sick with fear, I fully intend to make up for that. God bless you Blee, you can be bigger than this. BTW You a sooner or a cowboy?Best Wishes,Kevin'
) In any case, you sound like someone who possibly has some time on their hands, which leads to an idle mind... Idle minds tend to wander. My personal example of this is my sister, same situation as you, nothing and I mean nothing in life to be stressed about. She started having shortness of breath, chest pain, dizziness and a host of other symptoms. She went through every doctor within a 50 mile radius. She passed every test of every kind known to man. That was not good enough for her. She ends up talking a friend into taking her to Mayo in Minnesota... THREE TIMES. The last time cost her over $9,000 because her insurance wouldn't pay for it again. In any case EVERY doctor that she saw starting with her GP diagnosed her with the same thing, medical anxiety. She still thinks she is going to die any time now. It sounds like you have gone through a lot medically, so have I. Real things. Life threatening things. For some reason, my hardest battle has been BFS. We as normal everyday folks, have no option other than to trust the doctors who KNOW what they are looking for. As I have sat here trying to think of what to say to you, I have twitched in the following places, eye, neck, bicep, tricep, thigh, glute, and the ever present hand/palm. Blee, you are not alone, there are many...many, of us out here just like you. You owe it to yourself and your family to make everyday better than the last. I have wasted an entire year of my life absolutely sick with fear, I fully intend to make up for that. God bless you Blee, you can be bigger than this. BTW You a sooner or a cowboy?Best Wishes,Kevin'bfhopeful2
Well-known member
I was in your shoes...it calms down for no apparent reason with time. Your two months into the journey. Peace is around the corner. Ed holy *beep* bro...been a long time....love to see you around again. For everyone that doesn't know...ed is the man...listen to whatever he says abt this bfs bs.
AllGoodHere
Well-known member
Hola Ed! the return of the fringe. Then again a little fringe is a good thing in my opinion. This place has a problem with taking itself a little too seriously and wearing some fringe will fix that.Blee - So many people here past and present have had on-going never stop twitches and (yuch) even post on youTube vids of themselves twitching - you can find those with the search function but I guess you have to be into that kind of stuff.Note that you say you have no stress but you have past health issues - isn't this a form of stress (i.e. health anxiety)? It is a form of fear, right? There are lots of ways we can harbor stress - it doesn't have to be in-your-face. Matter of fact, in-your-face may be a bit easier since it is so obvious people can better deal with it then. However, that doesn't mean you have to live with it - you can go talk to someone about it and see if you can deal more directly, explore how/if it is affecting you. Personally, I found that when things seemed to be getting better for me, I worried more (as in would my kids be OK if something happened to me, etc.) - plus you are not so busy trying to make basic stuff work in your life and exasperating past problems may take on more and a different meaning. Why not go talk with someone who is open to working this stuff out with you and knows how tension from mental and unconscious stress can be held in the body?