View Full Version : Benign fasciculation syndrome
Hi All,
I have been diagnosed with bfs after seeing neurologist.
Anyone else have this condition?
I also have muscle spasms and an electrical type pins and needles sensation in my hands and feet.
I've looked into Benign fasciculation syndrome and I certainly fit the profile.
Anybody else have coping mechanisms for dealing with this condition?
I've tried just ignoring them but they are there 24/7 especially when at rest. Less so when moving around.
Awful things.
Need some advice please
Michelle
I hope that is what I have. I have been twitching for about 5-6 months now. Started in the left calf (perhaps because I was worried about some swelling in my left knee at the time). Then I had full body twitches, neck twitches, in addition to hip and butt twitches. My thumbs and index fingers twitch every now and then though my pinkies have stopped.
It is annoying, but I am not getting any weaker and any other scary symptoms I have had have other reasonable explanations especially when anxiety is factored in. If I were you I would be very happy with that diagnosis since most neuros will tell you no one has ever had BFS that progressed into something worse.
There is a great site aboutbfs.com that will answer many questions (though sadly the admin is AWOL so they cannot admit new members).
Time to stop worrying about your twitches.
ankietyjoe
17-06-17, 17:16
That diagnosis is just another way of saying 'a name for something we can't really describe'.
Don't worry about it.
It's just a side effect of anxiety.
FreakOutQueen
17-06-17, 18:20
I'm hoping this is what I have and not a dreaded MND! About 5 weeks ago I started with an eyelid twitch, which lasted about two weeks. During that time I got so nervous that I had ALS. Then my mouth tremored/twitches for a good week. Then I started feeling twitching all over my body and for the past week or so I have had twitches in my calves nearly 24/7. My blood work said I had low calcium so maybe that's causing it? I'm going to see a neurologist but they can't get me in until July 19th. I'm so worried :(
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I should also mention since yesterday my left hand tendons have been hurting so bad! I just want it all to go away.
Good luck with neurologist. I had brain MRI which was clear. Have some problem with my neck. No weakness, just painful joints, sore muscles and twitches 24/7.
Been diagnosed with fibromyalgia and Benign fasciculation syndrome.
I was low in iron so taking Suppliments for 3 mths to build it up. Also I'm taking magnesium to help with the muscle spasms
I've twitched every day, head to toe, for 16 months. Definitely BFS.
Did anything trigger it or did it just start spontaneously?
Is it in all muscle groups?
I've twitched for 24/7 for 17 months been to the neurologist 5 times had an EMG. I have BFS and it sucks but I'm very thankful. The best thing to do is ignore it. You can let it drive you crazy but f*** that. Just expect them know you are going to have them so no need in checking or timing them just accept them and go about your day. :yesyes:
---------- Post added at 01:54 ---------- Previous post was at 01:50 ----------
My arm started twitching after I thought I had a brain tumor really I had sinusitis. I developed an arm twitch. I googled it and saw ALS a out 2 weeks later I noticed my calves twitching 24/7 that and my 4th toe on my right foot, but I twitch everywhere randomly also. It's tough to ignore but I'm not going to let this control my life. You can do it !
Thank you. They are awful aren't they. Mine started overnight. First in the left calf then within a couple of weeks everywhere. I wonder if they ever do go away. I'm having Cbt for anxiety and practice Mindfullness to calm my brain but they still go every 24/7.
As soon as I wake up first thing I notice is muscle twitches the only time I don't have them is when I'm asleep.
Do you get muscle spasms and pins and needles feeling too? Bit like electricity?
Yes it makes my calves feel like I can't be still. I've gotten pains pins and needles everything. I use to be like that I would wake up and freak out about how bad my calves were twitching.toming them staring at them they would drive me crazy. Ignore them expect them and do t fear them they are being. I learned that staying busy helps with them. Anytime I drink alcohol, don't eat , or don't get enough sleep they increase the facisculations. Just expect and ignore them.
FreakOutQueen
18-06-17, 12:08
Reading all your stories really makes me hopeful that this is what I have and not something more sinister. I keep trying to tell myself I am going to be okay. That the twitching is benign and the more I think about it, the worse it will get. But then my mind goes to the "what ifs" and I start to get so anxious. I'm going away next week for a week and I really don't want this to ruin my vacation. My spouse is about ready to strangle me. I can't talk about these symptoms with anyone because they think I'm crazy and I'm desperately trying to get in to see a neurologist before I go away...otherwise I have to wait until July 19th. I guess the passage of time without developing any weakness will start to reassure me that it is benign. It is crazy what our minds do to our bodies.
Working out really helped me because building muscle and strength contradicts ALS. I use to sit and worry and look up horror stories. It was like I was scared to try and do anything. I didn't wash my truck for a year lol. The best thing to do is keep busy don't sit and worry, doing that will kill you not the BFS lol you will be fine it's not a subtle disease and twitching doesn't mean anything sinister is going on it just means your twitching when u feel them just tell them to f*** off and don't let the ruin your day
FreakOutQueen
18-06-17, 12:31
Thank you for the advice! I have a feeling I will be able to fully accept that it is benign once I get the "all clear" from my neurologist. Until then, I refuse to google anything because I inevitably find a story that scares me.
Yes best not to google twitching because the worst diseases always show up. I went on u tube the other day to view stories of bfs and they always jump to mind/als and I watched one I tube video and it scared me to death. I def need to stay off google. Trust the experts and if they say it's bfs then do your damn best to accept it.
I just hope and pray they settle down in time as I learn to accept and ignore them. I also get those body jerks just before drifting off to sleep. Sometimes fingers/toes move without me wanting them too. I have been stressed over the last year or so and think my body is over sensitised. So long as no muscle weakness (I often test my muscles i.e. Stand on my toes, heels, push pull) it's most likely bfs due to anxiety/stress. Yes your right how our brains can cause such worrying symptoms is beyond me but I'm finding the most I spend time dwelling on them the worse I'm becoming. Thanks all for sharing your experiences
Did anything trigger it or did it just start spontaneously?
Is it in all muscle groups?
Quite literally, head to toe. Tongue included.
Yes I get them on the tongue too, sometimes feel like I can choke just drinking water.
I get them in all muscle groups but worst in hands/feet/calfs.
Neurologist told me that's the most common places. He is obviously the Specailist and he didn't seem too concerned. I'm just hoping and praying they will calm down and go.
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https://en.m.wikipedia.org/wiki/Benign_fasciculation_syndrome
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Benign fasciculation syndrome (BFS) is a neurological disorder characterized by fasciculation (twitching) of various voluntary muscles in the body. The twitching can occur in any voluntary muscle group but is most common in the eyelids, arms, legs, and feet. Even the tongue may be affected. The twitching may be occasional or may go on nearly continuously. Usually intentional movement of the involved muscle causes the fasciculations to cease immediately, but they may return once the muscle is at rest again.
Benign fasciculation syndrome
Bfs spasm.gif
Animated image of BFS in the upper eyelid of a 19-year-old male. Symptoms subsided several days later.
Classification and external resources
[edit on Wikidata]
Signs and symptoms Edit
The main symptom of benign fasciculation syndrome is focal or widespread involuntary muscle activity (twitching), which can occur at random or specific times (or places). Presenting symptoms of benign fasciculation syndrome may include:[1][2][3]
Fasciculations (primary symptom)
Blepharospasms (eye spasms)
Generalized fatigue
Muscle pain
Anxiety (which can also be a cause)
Exercise intolerance
Globus sensation
Paraesthesias[4]
Muscle cramping or spasms [5]
Other symptoms include:
Hyperreflexia[2][6]
Muscle stiffness
Tremors
Itching
Myoclonic jerks
BFS symptoms are typically present when the muscle is at rest and are not accompanied by severe muscle weakness.[citation needed] In some BFS cases, fasciculations can jump from one part of the body to another. For example, it could start in a leg muscle, then in a few seconds jump to the forehead, then the abdomen, etc. While only one part of the body is affected at a time, hardly a beat is missed as it jumps from one area to the next. Because fasciculations can occur on the head, this strongly suggests the brain as the generator due to its exclusive non-dependence on the spinal cord. (Together, the brain and spinal cord comprise the central nervous system.)
Anxiety is often caused as a result of BFS, and a lot of sufferers have hypochondria as BFS mimics symptoms of much more serious diseases such as amyotrophic lateral sclerosis (ALS).
Causes Edit
The precise cause of BFS is unknown, and it is not known if it is a disease of the motor nerves, the muscles, or the neuromuscular junction. Though twitching is sometimes a symptom of serious diseases such as spinal injury, muscular dystrophy, Lyme disease, Creutzfeldt–Jakob disease (CJD), neurofibromatosis or amyotrophic lateral sclerosis (ALS), causes like BFS and over-exertion are more common. Mitsikostas et al. found that fasciculations "were slightly correlated to the body weight and height and to the anxiety level" in normal subjects.[7]
BFS can also be attributed to long term use of anticholinergics such as diphenhydramine and opiates such as morphine, but the latter case is usually when withdrawal symptoms are present.[citation needed]
Magnesium deficiency can cause both fasciculations and anxiety.[8] A vitamin D deficiency may also cause fasciculations, stemming from reduced ionized calcium in the blood (hypocalcemia).
Recent studies have found an association between widespread fasciculations and/or paresthesias with small fiber neuropathy in up to 82% of cases which have a normal EMG and nerve conduction study.[9][10]
Diagnosis Edit
Diagnosis of BFS is a diagnosis of exclusion, in other words, other likely causes for the twitching (mostly forms of neuropathy, such as borreliosis Lyme disease neuropathy, motor neuron diseases such as ALS) must be eliminated before BFS can be assumed. An important diagnostic tool here is the electromyography (EMG). Since BFS appears to cause no actual nerve damage (at least as seen on the EMG), patients will likely exhibit a completely normal EMG (or one where the only abnormality seen is fasciculations).
Another important step in diagnosing BFS is checking the patient for clinical weakness. Clinical weakness is often determined through a series of strength tests, such as observing the patient's ability to walk on his or her heels and toes. Resistance strength tests may include raising each leg, pushing forward and backward with the foot and/or toes, squeezing with fingers, spreading fingers apart, and pushing with or extending arms and/or hands. In each such test the test provider will apply resisting force and monitor for significant differences in strength abilities of opposing limbs or digits. If such differences are noted or the patient is unable to apply any resisting force, clinical weakness may be noted.
Lack of clinical weakness along with normal EMG results (or those with only fasciculations) largely eliminates more serious disorders from potential diagnosis.
Especially for younger persons who have only LMN sign fasciculations, "In the absence of weakness or abnormalities of thyroid function or electrolytes, individuals under 40 years can be reassured without resorting to electromyography (EMG) to avoid the small but highly damaging possibility of false-positives". "Equally, however, most subspecialists will recall a small number of cases, typically men in their 50s or 60s, in whom the latency from presentation with apparently benign fasciculations to weakness (and then clear MND) was several years. Our impression is that a clue may be that the fasciculations of MND are often abrupt and widespread at onset in an individual previously unaffected by fasciculations in youth. The site of the fasciculations, for example, those in the calves versus abdomen, has not been shown to be discriminatory for a benign disorder. There is conflicting evidence as to whether the character of fasciculations differs neurophysiologically in MND".[11]
Another abnormality commonly found upon clinical examination is a brisk reflex action known as hyperreflexia. Standard laboratory tests are unremarkable. According to neurologist John C. Kincaid:
In the absence of clinical and electromyographic findings of neurogenic disease, the diagnosis of benign fasciculations is made. I suggest that patients like this be followed for a year or longer with clinical and electromyographic exams at about 6-month intervals before one becomes secure in the diagnosis that the fasciculations are truly benign. My approach to treating fasciculations that appear to be benign is to first reassure the patient that no ominous disease seems to be present.[12]
Treatment Edit
Some degree of control of the fasciculations may be achieved with the same medication used to treat essential tremor (beta-blockers and anti-seizure drugs). However, often the most effective approach to treatment is to treat any accompanying anxiety. No drugs, supplements, or other treatments have been found that completely control the symptoms. In cases where fasciculations are caused by magnesium deficiency, supplementing magnesium can be effective in reducing symptoms.[13]
In many cases, the severity of BFS symptoms can be significantly reduced through a proactive approach to decrease the overall daily stress. Common ways to reduce stress include: exercising more, sleeping more, working less, meditation, and eliminating all forms of dietary caffeine (e.g. coffee, chocolate, cola, and certain over-the counter medications).
If pain or muscle aches are present alongside fasciculations, patients may be advised to take over-the-counter pain medications such as ibuprofen or acetaminophen during times of increased pain. Other forms of pain management may also be employed. Prior to taking any over-the-counter medications, individuals should initiate discussions with their health care provider(s) to avoid adverse effects associated with long-term usage or preexisting conditions.
Prognosis Edit
The prognosis for those suffering from diagnosed benign fasciculation syndrome is generally regarded as being good to excellent. The syndrome causes no known long-term physical damage. Patients may suffer elevated anxiety even after being diagnosed with the benign condition.[3] Such patients are often directed towards professionals who can assist with reductions and understanding of stress/anxiety, or those who can prescribe medication to help keep anxiety under control.
Spontaneous remission has been known to occur, and in cases where anxiety is thought to be a major contributor, symptoms are typically lessened after the underlying anxiety is treated. In a 1993 study by Mayo Clinic, 121 individuals diagnosed with benign fasciculation syndrome were assessed 2–32 years (~7 years average) after diagnosis.[1][14] Of those patients there were no cases of BFS progressing to a more serious illness, and 50% of the patients reported significant improvement in their symptoms at the time of the follow-up. Only 4% of the patients reported symptoms being worse than those present at the time of their diagnosis.
Taken from Wikipedia
FreakOutQueen
18-06-17, 18:54
Interesting that Hypocalcemia can cause this. I just got told my calcium level was low a few days ago. I am wondering if this is what is causing my twitching/cramping. I am on a calcium supplement so we shall see!
Yes definitely worth treating if it's low. Wouldn't it be nice if it's treated by vitamin Suppliments. My magnesium was on the low end of normal so dr agreed to me supplementing it with magnesium tablets. I take 3 a day and they seem to help a bit with the muscle spasms.
Apparently low vit d can cause it too, so it is possibly not all anxiety, but I do find anxiety makes it worse so it's a bit of a vicious circle.
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Also I was on piriton an antihistamine for a number of years that's on the list of medications that can possibly trigger it (BFS can also be attributed to long term use of anticholinergics - taken from Wikipedia)
I have an eyelid twitch that has been off/on for months. Sometimes the other eyelid twitches. From everything I've read this is considered benign and common and no Google hit ever mention more sinister causes. I don't have overall muscle twitches in other large muscle groups. I really do not want to do a neuro consult as my anxiety goes through the ROOF with doctor exam and testing. I just become nearly depersonalized during these things. I am hoping to just ride it out. I was alarmed to read above that it *could* be connected to ALS. :(
Twitching is not ALS . The sudden death of motor neurons is ALS. Eye twitching is the most common form of twitching and is benign. Try to ignore it and focus on distressing your mind and body. Get 7+ hours of sleep and avoid caffeine.
TooMuchCoffeeMan
28-07-17, 04:49
Oh man, I remember my bout with an ALS scare once several years ago. Also being OCD, I would get twitching ALL THE TIME especially in the legs, and then have to try to test myself by standing on the tips of my toes to see if I still could, or scare myself into thinking that I was getting ALS if I couldn't. I never got a diagnosis for my muscle twitching but several years later, I can still say that I'm twitching, albeit not as much but I have chalked it up to just BFS as well.
Just to let you know I still have the twitching, but it's been over a year and a half now and it's not progressed into anything more than bfs.
Some days are worse than others. Some days I can literally make myself twitch by just thinking about it. Best advice is to ignore them. Don't pay them any attention.
nervousnelly52
28-07-17, 18:40
I have this too! I'm not anxious anymore. I am amazed, but the medication really worked for me. It's harmless, even though the pins and needles can be painful at times. I have to say the anxiety was ultimately far worse and more debilitating than any of the physical symptoms I experienced.
Nervousnelly, what medication are you taking?
nervousnelly52
28-07-17, 22:38
Nervousnelly, what medication are you taking?
I'm taking sertraline (zoloft).
Thanks, that's what I suspected
"Equally, however, most subspecialists will recall a small number of cases, typically men in their 50s or 60s, in whom the latency from presentation with apparently benign fasciculations to weakness (and then clear MND) was several years."
This does not reassure me :weep:
Mine started right below my right knee after a neurologist did ncv/emg on both sides and diagnosis me with neuropathy, emg were clean but the twitches jumped to the other leg i found als sites and down the rabbit hole i went, now twitch everywhere, i just got a second opinion at a top neurologist on the west coast and he said it is bfs but he will do a emg on me to assure me, he said i would be surprised i found als on the emg and he should know since it is his specialty. So now i wait and obsess
@melfish quit researching. You will only make things worse for yourself. I admit when I saw your post in triggered my anxiety a little.
here are two messages I received regarding twitching:
"...The passage of time. This is the toughest one because nothing you do can speed time up. But time helps because the top neuromuscular doctors in the world have the time frame of twitching to clinical weakness anywhere from weeks to 6 months, tops. If you've passed 6 months, your chances of it being ALS are the same as you being eaten by a shark the same day you won the lottery."
"Mate unless you have a number of first degree relatives with Als your chances of having Als just because of your age would be about 1 in about 250 million honestly. Also they world leading authority on Als believes that twitching is the first symptom in about 1 in every 400 cases. And then is followed by clear cut weakness within 3 months"
Yes very very very rarely there are people twitch first, but the twitches from ALS are the muscles DYING because they no longer receive nerve signals. There is no way you could have muscle death for years and not be crippled and clinically weak. If there are about 6000 cases of ALS in the US then there are about 15 CASES that start with twitching. 15 out of 320 MILLION.
Stop researching. Please. See a doctor, tell them your worries and then trust them.
Thanks, Scottt, and apologies for triggering you. I definitely need to stop researching!
Wow scottt thanks for putting things in perspective,i am a 65 year that has twitch for almost 4 months, with pallesthesia, no weakness and good reflexes yet i obsess, now the only sites i go on are positive enforcement sites i stay away from anything that has als stories
I have really bad twitching in both calf's which I am worried about it being MND.
I have recently been diagnosed with BFS by a Neurologist. He said there was no need for an EMG but this has not put my mind at rest. I do suffer with health anxiety but am finding this really tough to shake.
I do too Craig. My left and right calf twitch constantly. From what I hear calf twitching is very common in bfs. Like in forums people start with"besides calf twitching, where do you twitch? "So obviously it's the norm for it. It sucks so bad and can worry the hell out of u. Just trust your doc and try to ignore them. I would always stay busy because I couldn't really feel them when standing or walking
Thanks , I am trying to ignore them but the thought of having MND and leaving my wife with two young kids is killing me.
Thanks , I am trying to ignore them but the thought of having MND and leaving my wife with two young kids is killing me.
Treat your anxiety for your two kids. Youve been cleared by a neurologist. You do not have ALS.
I hope you are right. Having bad cramps in calves as well now.
Hi Craig, I too get bad cramps so try not to worry it is all part of bfs. My neurologist told me most people with bfs get cramps/muscle spasms in their feet and calfs.
Interesting that there is a link between bfs and spinal stenosis as my most recent MRI of brain and neck showed mild stenosis in my neck. Maybe that is contributing to my bfs. Try not to think the worst please. The majority of twitching is out cns being over excited can be from the brain mis-firing. Or anxiety or neck and spine problems, I've had mine about 2 years I think and nothing more sinister has happened.
Have you had your magnesium levels checked ? X
Thanks all. Still really worried but trying to get over this.
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Just started mag supplements
Hey guys, has anyone had twitches they can see through their clothes? I just saw my doctor and when I told him I can see my arm twitching through my clothes sometimes he told me that really makes him concerned for ALS/MND. That terrifies me, he recommended me to a neuro. I'm only 25 how likely is it I have this disease!? I'm twitching all over but the biggest thumpers are in my left tricep.
I do I can see them through my clothes. It is very low especially if you have no weakness. The doc is just covering his a$$. Lol
Thanks for the reply nivekc, how do your twitches manifest? Where are they and what are they like? I find it crazy that I have little twitches everywhere but big ones consistently in my tricep up to five or so times a day.
5 or so a day is nothing to worry about. I have them constantly in my calves. I've twitched everywhere you can think of . I've noticed they are more noticeable after I drink caffeine, if I don't get enough sleep, or if I drink the night before. I've had thumpers, twitches that lock up the muscle, painful twitches, etc.. The best thing to do is ignore them because once you become fixated it's hard to pull away from it and it seems they become more frequent. Your doc is ridiculous for even mentioning ALS because of twitching alone. If and when you schedule a Neuro appt. He will put your mind at ease and present you with the facts. Stop worrying about this and live your life you don't have ALS ! :yesyes:
I agree lack of sleep is a trigger for mine too
As is caffeine
Stress is a huge one - I'm presently in Florida on holiday with my daughter and due to cruise Bahamas in a few days. Now due to hurricane Irma things are all uncertain and the increase in stress and adrenaline etc has caused a flare up of my bfs. Twitches everywhere.
I'm presently in Florida on holiday with my daughter and due to cruise Bahamas in a few days. Now due to hurricane Irma things are all uncertain and the increase in stress and adrenaline etc has caused a flare up of my bfs. Twitches everywhere.
You can pretty much count that out at this point. Stay safe!
Positive thoughts
"Equally, however, most subspecialists will recall a small number of cases, typically men in their 50s or 60s, in whom the latency from presentation with apparently benign fasciculations to weakness (and then clear MND) was several years."
This does not reassure me :weep:
where have you seen this report?
Here:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3664389/
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But you shouldn't be worried, Becazican. You've had a clean EMG ;)
What's a reasonable amount of time before you can stop worrying about *that* disease?
Melfish I think we're both at a point where we should reasonably be done with our fears :x
out of curiosity.. are you obsessed with looking at your tongue like me?
It seems that I have quite the hard time keeping my tongue at rest in my mouth.. even when I try keeping it still at the bottom of my mouth it moves quite a bit (every 10 seconds or so on a good day.. every couple on a bad day like today)
We're so similar with everything else just wondering if we shared that too :p
MyNameIsTerry
07-09-17, 08:24
Melfish I think we're both at a point where we should reasonably be done with our fears :x
out of curiosity.. are you obsessed with looking at your tongue like me?
It seems that I have quite the hard time keeping my tongue at rest in my mouth.. even when I try keeping it still at the bottom of my mouth it moves quite a bit (every 10 seconds or so on a good day.. every couple on a bad day like today)
We're so similar with everything else just wondering if we shared that too :p
Something interesting in OCD - those with sexually intrusive thoughts often experience groinal responses because their focus on that area.
Focus is very important. It's the difference between feeling something more intensely or not. Focus on your symptoms and you feel them even more which is a standard anxiety thing. It's easily proven by the fact that when you distract yourself, you feel it less. Or the classic one pain lessens another issue.
And another thing - telling your brain to stop doing something means it uses more energy trying not to than if it wasn't thought about in a natural way. The polar bear exercise is often used to demonstrate this.
Yes Bahamas cruise cancelled
Waiting to be evacuated back to uk later today
MyNameIsTerry
09-09-17, 01:03
Yes Bahamas cruise cancelled
Waiting to be evacuated back to uk later today
You get your anxiety better, book a holiday and what happens? Only the worst ruddy hurricane since 1920! Talk about Sod's Law!
Glad you are ok, Michelle. Safe journey home. Talk about a test of your anxiety!!!
With BFS do they start somewhere or move or can they stay?
EG: I've had a twitching eye for 3 months - still have it but now my lip has started twitching, it's my right and the left side of my lip.... I get twitches in my calves as well and my fingers will sometimes twitch by themselves which is weird, but does this fit the BFS profile?
Thanks Terry yes got back to england safely thank you but certainly tested my anxiety!!!
I watched a program yesterday called MND and 22 year old me, about a girl called Lucy Lintott who lived in Scotland and is the youngest MND diagnosed only at 19.
What I found interesting about the documentary was never once was twitches mentioned.
Her first symptoms were falling over a lot, slurring of speech and then walking with a limp.
I was amazed by her attitude and she had the most beautiful smile on her face though out her ordeal. It shamed me over my constant worry over bfs.
MyNameIsTerry
17-09-17, 05:53
Glad you got back safely, that's all that matters. :hugs:
I remember reading about that Scottish girl. She's an inspiration. Triumph in the face of adversity.
Somehow, I don't think she would think of your worries that way. I think she would be very understanding.
I would tend to get ups and downs with watching ALS documentaries . They would calm me down because like so many I never saw any that started with twitching. Mostly people falling or saying they couldn't pick a guitar or play a video game, but for some reason days later I would spiral back onto a frenzy and those same videos would make me freak out lol. A great member on here really helped me realize that I developed a phobia. It's an irrational fear of ALS ,seeing those people like that subconsciously terrified the hell out of me and it would eventually show. Now I just try to avoid any vids or docs about it. Me and my brain....:doh: we all are extremely lucky to just have BFS. It's annoying as hell but that's it. Remember no matter how bad it seems it will eventually pass, don't let it control your life
With BFS do they start somewhere or move or can they stay?
EG: I've had a twitching eye for 3 months - still have it but now my lip has started twitching, it's my right and the left side of my lip.... I get twitches in my calves as well and my fingers will sometimes twitch by themselves which is weird, but does this fit the BFS profile?
Even though I've twitched on and off all over for years and years, I've had a persistent twitch in my foot now for about 2 weeks which I'm desperately trying to avoid the ALS anxiety rabbit hole again.
nivek, I think I've developed a phobia too. Sometimes I can't tell where my fear of my having the disease ends and the fear of ALS in and of itself begins. I too have been watching youtube videos and documentaries and films about ALS, and while initially comforting, they invariably come back to haunt me and my symptoms seem so much worse. All context is lost, as I shoehorn my symptoms and signs into an ALS diagnosis. It's exhausting, and terrifying, and no way to live :(
Exactly, realizing that it's a phobia is the first start to getting better. I swear if i got a rash on my calf i would have associated it with ALS. I would get these irrational ideas and turn them into reality. Stay away from ALS videos and watch BFS videos and see how similar they are to what you are experiencing.
My fear is bulbar and I've just freaked myself out on the About BFS website, which is basically 5000 people all fuelling one another's fear of ALS. They go into great detail about tongue fibs and how you can see them on the tongue because it's a skinless muscle and now I'm convinced that's what's going on with me. I wish I could unread that stuff, honestly. I'd been consoling myself with the fact people aren't asking me if I'm slurring (even though I think I sound strange), and then I go and read all that stuff and my anxiety is worse than ever. Also, I'm terrified now I have hyperreflexia and positive babinski. Ugh. Burn down the internet, I reckon
MyNameIsTerry
18-09-17, 04:45
Some useful information about phobias:
http://www.nhs.uk/Conditions/Phobias/Pages/Introduction.aspx
The trouble with them is they also be part of other anxiety disorders or the cycles involved lean more towards a different anxiety disorder (OCD, Somatoform, etc).
Within my GAD I've also had mild Agoraphobia (typically when meds are introduced) and also Social Anxiety but I don't believe they are enough to form a new standalone when they are just elements of my GAD.
It really depends how your anxiety manifests. Working out which is tricky though as it means ruling out others. There is lots of overlap between us all too, which is a helper really as we understand each other better.
What would you say places someone in the phobia category compared to other anxiety disorders? Ruling out OCD is easier but the Somatoform Disorders can be tricky I think as they can be about singular systems in the body.
Yes you guys are right. When I watched the tv documentary on Lucy I initially felt relieved her first symptoms where not like mine but as the days have gone on the documentary has stayed in my mind and I've found my anxiety worsening. I've been sleeping really well lately and feeling more social and positive in my attitude but the last few days I've hardly been sleeping and when I do I wake up with a body jerk, it's like my body is tired and wants to sleep but my mind keeps waking it up. Waking up feeling all light headed and nauseous on a morning with a churning stomach.
I'm staying away from watching another MND documentary as I now feel it has infact triggered my anxiety.
Twitches definitely are more visual to the eye, very powerful muscle contractions and muscle spasms. I wonder sometimes if it is something to do with high adrenaline levels or high cortisol as I feel like my body is constantly in flight or fight mode and very rarely relaxed.
As a health anxiety sufferer I seem to be drawn to tv programs about health, ambulance, casualty, holby city, gp behind closed doors, basically anything to do with health! Mad isn't it. The programs I should be steering away from I am drawn to. I'm not even sure where this phobia began as I never used to be worried about my health. Now I'm obsessed by it, and the obsession is fuelling my bfs and making me hyper aware of all my bodily functions. Aggggghhhh wish I could turn this brain of mine off sometimes
Anyone else feel like this?
I completely relate. I have hyperawareness of every bodily sensation at the moment. I have lost my appetite (bad, because I am small already) and while I can sleep OK - in fact, I look forward to it, to escape the churning thoughts and constant checking - I am waking up in a panic and dreading the day ahead.
I too am drawn to medical programs, and anything medical in the news. Always have been. Weird.
Here:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3664389/
---------- Post added at 13:35 ---------- Previous post was at 13:35 ----------
But you shouldn't be worried, Becazican. You've had a clean EMG ;)
As over 70% of the population has fasciculations, the only reasonabe deduction is that the twitching and ALS were unrelated.
MyNameIsTerry
18-09-17, 17:59
Are people with phobias drawn to their fear or do everything to avoid it?
Can't speak for others Terry but I'm drawn to them for some reason. IE some people with health anxiety or health phobia can't stand going to the doctors, hospital or having blood tests where as in the opposite. I google everything on the subject, think of it constantly and want every test under the sun and then still don't believe it when the results come back.
I never used to care about health at all but something triggered it off, I have my suspicions it was caring for my father who had terminal cancer. When he passed I became obsessed with my own health. I think my bfs and a symptom of a cns that is constantly in flight or fight. It's a vicious circle because for me the more hyper aware I am of my body the more symptoms I get then the more anxiety. A very hard cycle to break once your in the thick of it.
I'm generally drawn to it. But this bout of healthy anxiety has a lot of avoidance happening along with it. I'm too scared to go to the doctor this time.
MyNameIsTerry
20-09-17, 01:56
When I think of emotophobics I don't see them as trying to make themselves sick. Quite the opposite. The same with agoraphobics. The same with dental phobias, clown phobias, heights, needles, spiders, etc.
Avoidance is a key part of the pattern. Avoidance is found across the spectrum of anxiety disorders though. Some HAers are afraid of going to doctors because they fear the results of the tests because they may confirm their fears, for instance.
In determining which fits, you have to rule out all the rest. Otherwise it's little different to the struggles over symptoms being cancer, ALS, brain tumours, etc because other possibilities aren't being assessed.
The HA label spans across a fair few disorders so there are going to be people in different categories.
Midnight-mouse
20-09-17, 11:22
When I think of emotophobics I don't see them as trying to make themselves sick. Quite the opposite. The same with agoraphobics. The same with dental phobias, clown phobias, heights, needles, spiders, etc.
Avoidance is a key part of the pattern. Avoidance is found across the spectrum of anxiety disorders though. Some HAers are afraid of going to doctors because they fear the results of the tests because they may confirm their fears, for instance.
In determining which fits, you have to rule out all the rest. Otherwise it's little different to the struggles over symptoms being cancer, ALS, brain tumours, etc because other possibilities aren't being assessed.
The HA label spans across a fair few disorders so there are going to be people in different categories.
I have emetophobia and I avoid anything to do with sickness ect, even other people being sick on the TV is a real struggle for me especially if it's realistic. I also have health anxiety and I fall into the category of being too scared to go to the doctors, because I fear them confirming my obsessions. I do eventually go though, normally about a year later, and usually that will be the end of the issue.
Sent from my iPhone using Tapatalk
Anybody notice certain things that trigger a flare up of bfs?
For me I've noticed exercise makes them worse
Hormones impact them
Stress/anxiety is a big one
Everytime i think about the twitches, they fire off. Been twitching for 2 months and my anxiety level is through the roof. The only thing keeping me afloat is that i don't think i have clinical weakness...but i've been noticing i am tripping over stuff
Anybody notice certain things that trigger a flare up of bfs?
For me I've noticed exercise makes them worse
Hormones impact them
Stress/anxiety is a big one
Hi Michelle, have been twitching a lot recently bodywude and especially the eyelids. I have found that excerising makes it worse for me too....I can go gym in the day and then find it difficult at night to sleep because of the twitching.
Anyone else get anything similar?
I can go gym in the day and then find it difficult at night to sleep because of the twitching.
Anyone else get anything similar?
Yes, I've just started to get more intense twitching after exercise (lifting free weights)
I had one in my thumb last night that went on continuous for over 2hrs. Really strong twitches not just small ones. I captured it on my phone video to show the Drs. Was going to post it on here to see if it looks similar to fellow twitchers but don’t think we can upload videos on here?
Sometimes I see them through my clothing. I used to worry they were something sinister but after 2 years of them now I am just trying to live with them and ignore the best I can. I hope one day they disappear for good
I get ones that move my whole thumb. I think that's quite a common place to get them along with calf muscles
Yes, I've just started to get more intense twitching after exercise (lifting free weights)
You do realize you wouldn't even be able to exercise if it was ALS as you fear right? When I was into weight training, my muscles twitched like mad after an intense workout.
Positive thoughts
You do realize you wouldn't even be able to exercise if it was ALS as you fear right? When I was into weight training, my muscles twitched like mad after an intense workout.
Yes, but I fear bulbar. And I actually didn't care about the twitching until I stupidly read bundles of first-person stories of where body-wide twitching accompanied the initial bulbar symptoms. I am my own worst enemy, I know ...
FreakOutQueen
11-10-17, 17:53
Maybe this will be reassuring or not for some of you. Unless there is a sign of CLINICAL weakness associated with the twitching, having an EMG is likely to trigger more false positives and create unnecessary panic in those who likely don’t have MND. I have been twitching for 6 months - calmed down in my calf muscles but continues frequently in the arches of both feet on a daily basis as well as the the odd finger twitch, butt twitch, eye twitch that doesn’t last long. Throughout the 6 months of twitching I have zero signs of weakness/progression and I have read that by 6 months one would know if the twitching was benign or something more sinister. I think we can all relax and just try our best to ignore the twitchy witchy’s.
Yes, but I fear bulbar. And I actually didn't care about the twitching until I stupidly read bundles of first-person stories of where body-wide twitching accompanied the initial bulbar symptoms. I am my own worst enemy, I know ...
That's what everyone says. What draws you to intentionally sabotage your recovery by reading this stuff?
That's what everyone says. What draws you to intentionally sabotage your recovery by reading this stuff?
I don't know :weep:
I guess I don't see it as sabotaging. I have this need to keep digging until I satisfy myself that it's not what I have. Then of course I inevitably come across something that matches my symptoms, and I am back to square one and have to start reading again until I find something points AWAY from ALS. It's exhausting and never-ending. But I feel like if I just STOP READING about it, it will sneak up on me or something. That I will jinx myself ... Arghhhh
FreakOutQueen
11-10-17, 18:10
Melfish - the thing about MND is that there is no cure. What I finally realized was let’s say worst case scenario, I have MND. Did I want to spend the rest of my healthy life worrying about something that cannot be cured? When I sat with that thought, I realized I absolutely did not want to spend the rest of my life worrying and obsessing over it. I wanted to run and play and travel and live. It’s been liberating and amazing. I suggest sitting with yourself and reflecting on this. It was really helpful for me.
But I feel like if I just STOP READING about it, it will sneak up on me or something. That I will jinx myself ... Arghhhh
Stopping reading about it is what will set you free. I've made progress in the past week by staying off ALS sites and stopping the Google searches. It's HARD to say not to those. When I get the urge I have to go and actively do something else.
But it really does work to keep your mind from spinning about this stuff. And I figure if I do have ALS, it's going to make itself pretty clear in not too long of time. And I might as well just enjoy life anyway in the meantime. There's not much we can do. Either it's there or it's not. Coming to peace with that has been significant for me.
I still really struggle with "checking" my various muscles for atrophy. That's a hard one to avoid since your body is with you all the time, obviously.
ATL
Yes, that's how I've been trying to look at it. It's the key, I think.
I read a post on the ALS forums saying how while anxiety-ridden ALS-phobics are wasting and destroying their lives and relationships shutting themselves away worrying about this disease, those who actually have it are in the park or by the sea in their power wheel chairs trying to enjoy every minute of it. It's a sobering thought.
Great post freakoutqueen (and great name)
I think exactly the same thing now. If it was something terminal it would of progressed by now, plus there is no cure so try your hardest to enjoy each day. Worrying for months and years is of no benefit and only makes the twitches worse. I’ve seen 2 neurologists and been diagnosed with bfs. I still didn’t believe them and worried it was something else. Had nerve conduction test which was ok, then worried because they didn’t do the emg so thought they missed something. Spent days pouring over google (worst thing ever) now resigned myself to its bfs and get on with living. It’s so hard I do know but I hope and pray we will heal in time and by reducing stress/anxiety and seeking appropriate health advice and ways to manage it. I have Cbt on a weekly basis and this is helping with the Health anxiety but there is always that little devil on my shoulder.
Love to hear from someone who had bfs and got rid of it? Anyone?
I actually think reading and learning about it is the key to freedom. Once you see what the disease REALLY IS and how it works, you'll realize how different you are.
There is so much misinformation out there, especially in the BFS community. There is also too much brief info on the internet that says crap like "symptoms of ALS are weakness, atrophy, twitching." It's hard to really learn about the disease like that, so to an anxious mind, it becomes a free for all. I learned valuable things on the ALS forum like that atrophy does not and cannot come before weakness in ALS, since it's a disease of the nerves and not the muscle. Therefor all the "atrophy hunting" I was doing was a complete waste of time because if I didn't have clinical weakness I COULD NOT have atrophy due to ALS. Knowledge is power!
Yes, the minutiae people on the BFS forum become obsessed with is beyond even me!
The weakness before atrophy maxim has certainly helped me out. Now if only it were so clear re twitches and weakness. Their sticky is pretty unequivocal, but the individual case studies often contradict it ...
Hey Guys, i was just deep in an A*S rabbit hole myself and i'm slowly digging myself out of it. Twitches are still there and i think there is atrophy in my left calf but i just had and EMG and the neuro said "excellent" She admitted to seeing the fasics but that was it...just fasics.
I just wanted to chime in and say that I really enjoyed these last few posts on this thread, very positive and uplifting for everyone. I hope and pray that all of you are all good and get out of this hole quickly and enjoy life. I am trying to do the same.
I asked the neuro what the heck could i do to help with twitches and she said nothing...unless there is pain, there is really nothing you can do...so I'm taking the remaining Ativan that i have (slowly) and will be meeting with my GP to see if i can talk to a therapist...
----------------------------
I also wanted to add on my atrophy...i live in NYC and i walk around alot so i guess i don't have clinical weakness on my "atrophied calf" LOL
Yes great positivity on here. All helping and encouraging each other it’s great!
Can I ask my fellow twitchers. When your muscles are twitching and then stop, if you tap the area does it starts twitching again? Mine do
Mine do not...however sometimes...when i twitch...i stare at it and it kinda pumps up twice ...it's almost as if it's acknowledging me....i know i sound crazy
I don't know :weep:
I guess I don't see it as sabotaging. I have this need to keep digging until I satisfy myself that it's not what I have. Then of course I inevitably come across something that matches my symptoms, and I am back to square one and have to start reading again until I find something points AWAY from ALS. It's exhausting and never-ending. But I feel like if I just STOP READING about it, it will sneak up on me or something. That I will jinx myself ... Arghhhh
Don't you find reading all this symptom stuff really boring? Maybe if reading it became a chore instead of adrenaline fuelling/stimulating it may help you realise how emotionally significant and important the fear of bulbar has become? Have you thought how you would live without this fear?
That's an interesting question, and one I've asked myself. I alternate between the fantasy of how I would embrace life and live fully and joyfully with a newfound perspective, and the more likely scenario that all the other problems that have been pushed into the background by this bulbar fear would come rushing in to fill the void ...
And yes, despite the adrenaline it's really boring to be so obsessed with this. There are a million other things I'd rather be doing (so DO THEM, I hear you say).
Hey Melfish, i know it's not that easy (been there, still there!)...but I read this on a website (not telling which one so that no more anxiety builds from this)...but we all fear something that is obviously progressive...maybe take each day and notice that you are still fine...keep doing it, have a manual calendar ...and take each day without any symptoms as a victory!
Oh I have a calendar, on my wall. I'm not sure that it's healthy, but I'm counting...
That's an interesting question, and one I've asked myself. I alternate between the fantasy of how I would embrace life and live fully and joyfully with a newfound perspective, and the more likely scenario that all the other problems that have been pushed into the background by this bulbar fear would come rushing in to fill the void ...
And yes, despite the adrenaline it's really boring to be so obsessed with this. There are a million other things I'd rather be doing (so DO THEM, I hear you say).
I appreciate your honesty, melfish. I know it's far from straightforward and I certainly have my own demons which control me and have assumed far too much emotional importance in my life. It's the void that would be left in a non-bulbar-fearing world and what would take the place of it after so much time invested in absorbing every detail of the illness which may give you food for thought, I suppose?
It's the void that would be left in a non-bulbar-fearing world and what would take the place of it after so much time invested in absorbing every detail of the illness which may give you food for thought, I suppose?
Yes, and if this thing weren't so all-consumingly terrifying, I'd probably find it intriguing, psychologically speaking. I guess it boils down to my being an excellent diagnostician, or quite bonkers.
But you aren't medically qualified to be an excellent diagnostician..Only in the world of HA
But you aren't medically qualified to be an excellent diagnostician..Only in the world of HA
Heh, of course I'm not. But, shhh, don't tell my HA
Maybe tell your HA though...it's getting food from a fake doctor..
Yes, the minutiae people on the BFS forum become obsessed with is beyond even me!
The weakness before atrophy maxim has certainly helped me out. Now if only it were so clear re twitches and weakness. Their sticky is pretty unequivocal, but the individual case studies often contradict it ...
There are some very rare reports of it, but not many. Some neuros don't even believe in it. They think that just because twitching was the first symptom YOU noticed, doesn't make it the first symptom. Others believe that because a large percentage of the population has fascics, that some are bound to end up with ALS, and it's pure, unlucky coincidence. Twitches before weakness have been seen in both patients that have upper motor onset, and cases of familial ALS. Why, we don't know. So you're really talking about fearing a subset, OF A SUBSET, with a very rare presentation, in a rare disease. Mel, at some point it will hit you - there is just no damn point in worrying about being some unicorn rare victim of a disease. May as well fear an asteroid landing on your head when you leave the house tomorrow. It's *almost* as likely.
There are some very rare reports of it, but not many. Some neuros don't even believe in it. They think that just because twitching was the first symptom YOU noticed, doesn't make it the first symptom. Others believe that because a large percentage of the population has fascics, that some are bound to end up with ALS, and it's pure, unlucky coincidence. Twitches before weakness have been seen in both patients that have upper motor onset, and cases of familial ALS. Why, we don't know. So you're really talking about fearing a subset, OF A SUBSET, with a very rare presentation, in a rare disease. Mel, at some point it will hit you - there is just no damn point in worrying about being some unicorn rare victim of a disease. May as well fear an asteroid landing on your head when you leave the house tomorrow. It's *almost* as likely.
Great post, Josh. Don't make me hug you :bighug1:
I started off with twitching in my left thenar area while pregnant, but OBGYN chalked it up to pregnancy-related.
After having my son, twitching continued with some pain and my doctor referred me for EMG in June, which came back fine. Twitching and pain continue, and twitching also moved to my left foot. At this point, my anxiety was sky-rocketing because I had googled twitching and A*S came up. I also felt some tingling in my face, so doctor referred me for an MRI to "rule out MS". Went to get my MRI results and my GP says "Oh, you're not crazy...you have MS"!
So, needless to say, my anxiety went through the roof and I had a major nervous breakdown as I have 2 small children (4 and 11 months). I had to be medicated with Cymbalta for anxiety and Trazadone to sleep at night. The weird part is, my fear of A** continued and I seemed to be more fixated on that then MS. My twitching increased and spread to various areas of my body, including my mouth and now my tongue. Super scary.
After seeing 3 neurologists (who have all reassured me that I don't have A** by the way), it looks unlikely that I even have MS after all as I had a spinal test done that came back negative, and evoked potentials tests done that all came back negative as well. I have had extensive blood work done to rule out a bunch of other diseases.
Waiting to see an MS specialist in December, but my overwhelming fear is still of A**...
I look in the mirror and seem to notice all of these dents, which of course I attribute to atrophy. My tongue twitches on a regular basis now, and I feel like I have nerve pain going from my tongue down my arm to my hand that comes and goes. I feel a lump in my throat, and worry about bulbar A**.
I have no weakness or dizziness etc. All of my physical exams, including a 2nd EMG test, have all come back perfect - except for some hyper reflexes, which of course scares me too.
This is horrific and terrifying. My mind won't let it go.
i'm back down that rabbit hole again...my right calf started twitching like crazy and has not stopped since last night 10pm NYC time. It's been going and going and i'm staring at it twitch. Two weeks ago i had a clean EMG (well the Neuro didn't say clean she just said excellent results, didn't even give me a BFS diagnosis)...
I'm taking zoloft right now as this has been keeping me from breaking down at my desk...someone please tell me i'm being irrational and i'm fine.
You are being irrational. An EMG would show issues even before you even had symptoms. Twitches in the absence of clinical weakness are meaningless.
Thank you Melfish...i feel like you and I are somewhat similar in our fears??? I see you are you on your way to recovery...are you taking anything for it? I was actually doing really well until last night (was having random twitches here and there) but the calf thumping has just gotten me somewhat crazy (only somewhat since zoloft is helping).
Yes, we fear the same disease, just different onset. I can be terribly rational about limb onset, lol. I'm making some progress, but I'm not there yet. I'm not taking meds, but the passage of time is helping. That, and making a real effort to bring my mind to a place where I can accept that this might be anxiety-related and not the disease I fear. Unfortunately, I can't seem to keep away from the ALS boards and they rekindle the fear every time. You'd think I'd have learned by now. I guess I feel if I keep reading there, I'll finally come across that one post that puts paid to my fears. Ain't gonna happen!
I read a great post there by a PALS who essentially said, if you want to get over the fear you have ALS, stop reading about it. Stop thinking about it. Just stop. That's all you need do.
Makes sense to me ...
I've stayed away from the A*S boards...there is one user on there that scares the crap out of me....I would say...if i'm trying to be helpful....and i think i mentioned it before is to stick with the BFS boards....
i really was doing well except for last night...I guess time will tell and is on our side.
I just wish these twitches would just go away completely!
Now I'm curious which user, lol.
Yes, I know I need to stay away, and my reason for going there is irrational.
Seriously, you have no reason to worry with your clean EMG and I presume clean clinical. That means no LMN or UMN signs! You are CLEAR. If you are worried you had your EMG too early, you've read enough to know that's not possible. Your twitches are benign. Ignore them.
Thanks Melfish...I have to keep telling myself that...I think my neuro thinks i'm crazy - she did a clinical about a month ago and blood test...all were normal...she did 3/4 limbs on the EMG...I guess this new thumping on my right calf for almost 24 hours has gotten me all "nerved up." HAHAHA
I would like to tell you who the user is on the A*S forum but i don't think i would help in your recovery...or maybe it would?? If you and are I are alike, you're better off not knowing hahah.
Hopefully one day you and I can get over our fears at least 90% and help others get over theirs! (Maybe by that time there will be a cure so we don't have to worry about it anymore)
Yes, a cure would be amazing. That's the thing with these orphan diseases, though. No money.
---------- Post added at 12:17 ---------- Previous post was at 12:16 ----------
In the case of ALS even more so; because it kills so quickly, prevalence is also low.
Yes i agree...it's such a rare disease its not worth the investment...but it really is horrible and maybe it will be discovered by accident or something while they were testing for something else more common.
Great to read about the progress you two have made.
i have never been to a neurologist because i'm too scared i will hear bad news (like als)
i have muscle twitching for about a year especially when i'm stressed.. i don't know what is it... maybe it's bfs but also maybe it's something serious.. i don't want to know!!
Great to read about the progress you two have made.
Thanks. Still very much two steps forward, one step back, but it's progress nonetheless
---------- Post added at 12:39 ---------- Previous post was at 12:37 ----------
i have never been to a neurologist because i'm too scared i will hear bad news (like als)
i have muscle twitching for about a year especially when i'm stressed.. i don't know what is it... maybe it's bfs but also maybe it's something serious.. i don't want to know!!
Twitching for a whole year in the absence of clinical weakness rules out ALS.
Yes, I am with Melfish....slow progress. but alas, progress. At least Melfish is not taking any meds.
Dus1996 - if you've been twitching for a year and have been living a normal life then you can rule out A*S for now....because if it was anything sinister, you would have at least dropped foot or not be able to button your shirts!
Jett81013 Dus1996 - if you've been twitching for a year and have been living a normal life then you can rule out A*S for now....because if it was anything sinister, you would have at least dropped foot or not be able to button your shirts!
i hope you're right but i made the mistake to read threads from the als forum and there are cases where the patient was twitching for a long time before they saw any weakness and all the problems.. so that freaks me out a little!!
Twitching is common. Everyone twitches. The twitching may have had nothing to do with the later onset of ALS. Or else there were other symptoms that went unnoticed by the patient. In any case, you're worrying about a rare presentation of an already rare disease. You're not that special ;)
Dus 1996 - you can find anything on the internet that you want ....trust me, i've looked up the same thing...and I'm still freaked out...but the odds are in your favor...that's like a one in a million situation...plus the twitching and the weakness may not have been related...
And i hate to say it but that person may just be a troll to instill fear in others out of pure malice (which may sound odd, but doesn't surprise me these days)
Retroactively connecting "symptoms" is fraught; things that may have nothing to do with the diagnosis are viewed as precursors or warning signs. It's a natural instinct to try to put the pieces together, but even PALS on the boards urge against it.
nervousnelly52
26-10-17, 03:31
Hi, just decided to report back. Mine went away. I don't get this anymore, or any of my other weird neurological symptoms. There is hope.
Great to hear a positive story
I still have mine, I also have Fibromyalgia so maybe a link there..... I’m not sure. Anyway great to know somebody’s finally went away
Thank you for the glimmer of hope. I must say my twitches have gotten less after my EMG and zoloft...still there though but I am getting better at ignoring it.
DukesisTwitchy
02-11-17, 16:11
Hey Everyone, I'm new here. Just wanted to say how awesome it is to feel that I'm not alone in this daily struggle. Just a bit about myself.
I started twitching just before my 27th birthday, which was February of this year. It started with a weird headache that no one ( Doctors) could explain. I was in a panic for a few days. Shortly after the twitches started. They started in in my arms or legs,I don't really remember. I've had three visits to the ER, CT Scans, MRI, Three Neurologists ( One a Neuromuscle specialist) Two EMG's / Nerve conductions studies all clean ( Every muscle in my body as been tested, excluding my tongue) and countless blood tests . My last visit to the Neuro ended with her telling me that I should consider getting a second opinion, because she can offer me any additional answers as to what's wrong with me. She also mentioned that I should consider getting a Muscle Biospy, But admits that she doesn't think that there will be any additional findings, so Why even recommend?
This as been a really rough year for me. These twitches are out of control, as most of you the fears or ALS are very real. Even with all theses tests done, I always question: Was it to early for the tests to detect anything?, why am I still twitching? This guy on that ALSForum said his first symptoms were twitching. If they can't offer any additional help then this must be it, I'm just waiting for the weakness to set in. I can still go to gym and lift weights with no problem, I can run, jump, play with my daughter etc.
I'm constantly having emotional breakdowns, crying to myself at night while everyone is asleep. Locking myself in my office at work, I twitch everywhere, and I mean everywhere, arms, legs, torso, back, hands, fingers, face, tongue, lips. If its a body part it twitches. Some are so strong that they move big muscle groups, Wake me up out of my sleep. I hate talking at times because my lips start have a conversation on their own ( Bad twitching Joke). I don't see how anyone can live with this for years at a time. Its emotionally and mentally taxing. At times I feel like i'm loosing my sanity.
Basically I'm struggling to make it day to day. It was nice to see an active forum where others are currently going through this. The aboutbfs site can be a lonely and scary place. I try my hardest to not even look at the other ALS specific sites. Any advice would be greatly appreciated.
D
You can't have an EMG "too early". The EMG will pick up stuff before clinical symptoms begin. If your twitching were related to ALS, the EMG would have found other changes.
You have been twitching since February. You have no weakness, a clean EMG and presumably several clean clinicals. Ergo you don't have ALS.
---------- Post added at 09:26 ---------- Previous post was at 09:25 ----------
Also, stay off that about bfs forum. Those people are serious obsessives. Even I steer clear of that one.
DukesisTwitchy
02-11-17, 16:31
Thanks for the reassurance melfish. My last clinical was on Monday. Two days ago. I just don't know what else to do at this point. I feel like it's a battle between by body clearly having something wrong and my doctors telling me otherwise. She told be her current RX is Nerve hyper-excitability. Basically BFS.
Right, so be happy you don't have ALS. It's something benign. Annoying, but benign. You nerves aren't dying. The doctors didn't miss anything. I bet if you start telling yourself this instead of freaking out about a disease it's IMPOSSIBLE that you have right now, your hyperexcitable nerves will begin to calm down.
DuikeisTwitchy, i'm going through the same things as you (even the emotional breakdowns)...I thought i was over it but my calves have started up again and I'm really trying hard to not to panic as I had a clean EMG earlier in October.
The twitches are extremely annoying, but as i've read on the bfs forums and my rational side of me...maybe the best way to treat this is to manage the anxiety about it...possibly a benzo or SSRI (zoloft/xanax etc)...is that something you are willing to consider?
DukesisTwitchy
02-11-17, 20:27
I have nothing against medication. The only problem with that is my neurologist put me on a round of carbamizapine to see if it help with the twitches. I'm not sure if it helped much but it was destroying my liver. So I had to stop once I started having a bad allergic reaction. ( Dark colored urine, extreme itchiness and fatigue). Basically all my liver tests where off the charts. At the time i was taking two different pills for anxiety daily( perscribed by the same neurologist). They were very low doses so they may not have been strong enough to really make a difference. At this point I'm willing to try anything. Expect carbamizapine obviously.
The other thing that has me stressed is my neuro telling me that she can't offer any additional help. But tells me that I should consider getting a muscle biopsy. But in the same sentence states she believes it will be normal however. Then later on in the same meeting she recommends that I go see an ALS specialist. But literally turns and tells me " that's not why I'm sending you there, I don't think you have ALS. He also specializes in other muscluar conditions." So naturally I'm thinking she lying so that I don't spiral out of control ( I have cried in her office in the past, during my first EMG). So I just don't know what to think anymore. I twitch. But doctors won't or can't tell me why. But apparently I should consider getting a biopsy just as a precaution. And go see a doctor that specializes in the one disease that I'm terrified of.
Did she take a blood test for any muscular inflammation? The way you are describing this doctor, looks like she just wants to cover her butt...but she might also be just trying to help you out since she sees that you are very anxious about this situation (I am very anxious right now too but my family is getting annoyed with me).
DukesisTwitchy
02-11-17, 20:56
Yeah we really do sound one in the same. My family is trying to be there for me but it's hard. I've had just about every blood test that you can think of. The only thing that flagged a few times was a high CK level. But that was almost always do to me going to the gym shortly before going in for blood tests. Once I stopped working out , they went within normal rage. All other tests were fine. Calcium /magnesium and I believe all the other things that can cause muscle twitches. Low vitamin D. But I'm sure that has to do with my skin complexion as well as the lack of time that is spend in the sun.
I do feel like she tried to help me to the best of her abilities. It's just suggesting that I get a test done (surgical operation ) when there are no other tests that are suggesting it necessary. Doesn't compute will me. And then recommending me for an ALS specialist when she has repeatedly told me that is not on the table since the two clean EMGs Has me completely shook. I don't know which way is up right now. All I know is that my twicthing is progressing. No weakness. No atrophy that neither I nor my many doctors can detect. I don't know what the hell is going on.
It sounded like the nleurologist has ran out of tests and cant tell you why you twitch , also known as benign fascisculation syndrome lol. They were letting you know the only thing left is a muscle biopsy. The best thing to do is try and accept these twitches as harmless . Its rough i know ive had a hot spot on my hand and started doing strength tests and thought my arm felt weak, then I went and worked out and realized how healthy I am lol. I've been kinda worrying about my toe because when I stretch them out my ring toe aka 4th toe twitches like crazy , all of this started to flare up when I found out my wife was preggers lol , so stress has a huge part . Try to relax and expect twitches and ignore them . You can do it !
actually there is a study out that bfs has a link to small fiber neuropathy which is a growing syndrome in this country. emg will only pick up large fiber neuropathy . muscle biopsy will show small fiber.
Hi Niveck I just want to know whether it fasiculations were really so regular 24 hrs
Yes I twitch constantly in my calves. Unless I'm walking or flexing.
What exactly is Single Fiber Neuropathy...i'm too scared to google!!! My twitches are still here but less...but any twitches i notice are in new places UGH
Do you mean small fiber neuropathy ? It's usually a sensory problem like numbness and pins and needles. Have you been diagnosed with this ?
Yup sorry, meant small fiber neuropathy. no i haven't been diagnosed with anything. But still twitch (not as much as i used to) but i also have the sensation of pins and needles
You don't need another neuro, you need a psychologist.
tryingtosurvive1
12-11-17, 06:10
look, you can just ask your neuro, what neuromuscular condition do you think I have? there are way milder ones than ALS, for sure!
I’ve been experiencing the twitches intensively for about 3 weeks. On and off since childhood I have had slight hypochondria tendeancies but I can see a threat that brought me to where I’m at now. My brother died very suddenly from Leukemia only 2 days after being diagnosed and it really put me face to face with my own mortality. Sight after he died I had an eye twitch that lasted for about 2 weeks but I chocked it up to Anxiety. Skip forward to 3 weeks ago and after I woke up with a twitch in my leg that was so forceful that it woke me up. I made the mistake of googling muscle spasms and, well... anxiety, obsession, and suddenly my body is alive with muscle spasms. Same as all the reports that I have read, aI have literally all the signs. I have seen my twitches minimize when I am minimizing stress, keeping busy, and not dwelling on them. I went on a 2 day trip to a fun event and I had very minimal twitching the entire time, unfortunately, I drove 10 hours straight there and back and ended up with a sore muscle in my foot and shin from pushing the gas pedal for 20 hours total... So immediately I started thinking “this is a sign of something worse, and it all started again. I do have muscle soreness and fatigue mainly in the areas that seem to twitch the most. I can say that it hasn’t stopped me from living my life as physically, but it is majorly impacting my ability to chill, remain calm, and enjoy my life. I go back and forth between being CONVINCED that I am dying, to living as it all is well. I’m trying to use my internet searching powers for good and researching BFS instead of dwelling on all the horrible and deadly diseases it could be.
This page has helped me a lot (he types as he lays in bed, hyperfocused on every twitch and sore muscle). I have been doing yoga and it seems to help me a bit.
I have had nights where I was convinced that I was having intense muscle spasms and it turned out to be my heart beating out of my chest. I’ve also had days where I woke up with no twitching and started thinking “I’m not having the twitching, what it it comes back” and it immediately started up again.
I’m Not sure where this is really going but I hope all of you are doing well and are Twitch-free and resting easy.
Ps. The index finger/thumb twitch freaks me out the most.
countrygirl
03-02-18, 16:58
I have been twitching daily for 36yrs. Is this a record! The longest twitch i had was everyday all day in my top lip for 2 years.
Wow 36 years that must be a record!!!
Mine started 2015, must say they are getting better. Still there but not as prominent as they used to be.
Funny thing is I sometimes think I haven’t twitches for a while and I can actually start twitching shows it’s linked to the vague nerve and anxiety in my case. When I’m calmer I twitch a lot less or not at all.
Learning to ignore them is s skill in itself. I’m still here 2 years later and if anything they are getting less ��
Kingdawson
04-03-18, 23:47
I sometimes get random twitches in body parts when staying still but they literally last a second or 2 then go( kinda like a little rumble). Is that considred BFS?
I do have a persistent eyelid twitch now thats been around a month which is annoying.
This is the latest thing I am anxious about.
I have pretty much had every anxiety symptom under the sun starting from 10 years ago:
I started off in my teens with the typical panic attacks. (Hot and cold flushes, feelings of dread, hyper ventilating etc.)
It then evolved into heart palpitations when I got over that, and once I got over the palpitations it was the whole GERD thing which seems common. (Acid reflux, heartburn, trouble swallowing, globus, fear of throat cancer, IBS etc etc.)
Now past that, I have been getting muscle twitches all over my body, most noticibly in my calves but not exclusively for atleast a year now. However, the last couple of weeks I have been stressed about work and money and it seems to have got much worse, I am getting the twitches now regularly every day.
What I have noticed though is that it is worse in the evenings (when my anxiety has always been at it's worst) and when I am especially uptight. When I am busy during the day / just woke up / excercising it is fine.
I normally run 10k twice a week, if not three times and have been lifting weights and doing calisthenics regularly. I have been steadily building up and so that would point away from anything sinister in my opinion.
Would you guys reccomend not seeing a doctor? I have always tried to avoid seeing the GP as I think getting anxiety symptoms checked out is not healthy. In the absence of fatigue / weakeness / muscle loss I personally would like to not go down the medical route.
Thanks!
As a secondary point has anyone noticed their anxiety symptoms morph into something else once they are 'over' their old symptoms? It is amost like it is a living evil entity evolving to keep you constantly on edge.
Kingdawson
11-03-18, 12:36
If you've been getting them for a year why are you worrying? Unless theres accompanying symptoms i wouldnt be seeing a doctor. Everyone twitches...some a lot more than others.
---------- Post added at 12:36 ---------- Previous post was at 12:18 ----------
Also lifting weights makes me twitch more so probably doing the same for you.
The twitch that irritates the hell out of me is the eyelid twitch. Its nit constant and doesnt close eyelid but comes on at random times during the day. Super annoying.
flatterycat
11-03-18, 14:44
I’m current, and in the midst of this fear. I also can’t use the fact that it’s been going on for a long time so I can discount my mnd worry. I stared twitching a week or so a go. I’ve even had it while standing, which completely freaks me out after reading so much. :weep:
yea me too. twitches, jerks, shakes. does it worry me? yea, but I have to keep reminding myself that ive felt like this for a long time. since I was a kid ive been shaky, stuttery, issues with swallowing, charley horses, and weird muscle things.
I used to call them "spasms", but then learned last year they were "twitches" lol. twitching im sure ive had all my life, but at least 5 years I know for sure.
The past year and a half my anxiety has been the worst ever. But there were some weeks where I had no twitches for a full week and I felt great, but once my anxiety hits me again they come back in full force.
Lately its been my calves and fingers/hands.
Kingdawson
11-03-18, 19:35
How do people twitch then? Is it continues?random body parts? How long does it last?
From what ive read all over, a twitch is a twitch. Doesnt matter if its popcorn, rumble, snake like, fast, heavy, can see, cant see.
I recently saw video of a athlete whose calves rolling around. It looked like snakes slithering back and forth, and the diagnosis was dehydration from an intense gym session.
Kingdawson
11-03-18, 20:07
From what ive read all over, a twitch is a twitch. Doesnt matter if its popcorn, rumble, snake like, fast, heavy, can see, cant see.
I recently saw video of a athlete whose calves rolling around. It looked like snakes slithering back and forth, and the diagnosis was dehydration from an intense gym session.
As I said on another thread....I visit a bodybuilding forum quite regularly and the amount of threads about twitching is ridiculous. Most don't even blame it on their workout(they twitch randomly even when they're not working out) and couldn't give a damn about it. They even laugh and some just have it in one location that would freak people with HA out.
---------- Post added at 20:07 ---------- Previous post was at 20:05 ----------
yea me too. twitches, jerks, shakes. does it worry me? yea, but I have to keep reminding myself that ive felt like this for a long time. since I was a kid ive been shaky, stuttery, issues with swallowing, charley horses, and weird muscle things.
I used to call them "spasms", but then learned last year they were "twitches" lol. twitching im sure ive had all my life, but at least 5 years I know for sure.
The past year and a half my anxiety has been the worst ever. But there were some weeks where I had no twitches for a full week and I felt great, but once my anxiety hits me again they come back in full force.
Lately its been my calves and fingers/hands.
I'd your anxiety about other health issues?
catalyst1988
16-07-18, 19:36
Hello,
First off my heart goes out to everyone dealing with this. It is such a difficult thing to deal with on a constant basis. What started with a twitch in my calf and a spasm in my upper abdomen has turned into a nearly constant string of random spasms. Some days are better than others and some locations are better than others. I'd much rather my leg then my forehead. At this point, I've only seen my GP and he has referred me to neurology. Blood work was done and everything came back fine except for Vitamin D on the low end of acceptable and slightly elevated bilirubin which the doc said was likely due to the fasting blood panel. My GP is pretty confident its BFS. My question for others in this situation is what is your best coping technique?
I've been having twitches in my calfs 24/7 on both legs for over 2 months. About 1 month before they began I has a Shingrex shot for shingles prevention. That shot was the only thing out of the ordinary for me before the twitching began. So far I've had no other symptoms other than sometimes my legs feel heavy when I'm walking.
I’ve noticed many people in this threadsaying their vitamin d was low. Mine was also low,been supplementing for a month now and not feeling better. Can anyone update if they’ve had success supplementing and how long it took?
Hello all!
It seems as though this thread has pretty much gone dormant, but I wanted to share my recent experiences with what I hope is just a case of severe anxiety-induced BFS . . .
About 6 weeks ago, I started feeling a tingling/numbing in my left hand. Then, within a few days it spread to my whole arm, then my left leg, then the right one, and finally, to my right arm, although with much less intensity. I also started to feel cramps and aches, primarily in my lower back, left shoulder, and legs but also occasionally in my arms and hands. As I have to walk around a lot because of my job, I did notice that the pain/cramps got more intense as the day went on, to the point that I was really sore by the end of the day.
I then went and asked Dr. Google what I might have, and of course, I found the Big One that we all are terrified of having. The more I read about it, the more convinced I became that I had it and that I was done for . . .
I went to the doctor's to rule out any other diseases. I've suffered from food poisoning a few times before, and the symptoms are actually very similar, so I had blood work to see if that was the cause again. All blood work was negative for pretty much anything. He said I was in good health but referred me to a cardiologist just in case, though. My brother has a heart condition, so the cardio did an EKG and found that my heart was perfectly fine. Both Drs. prescribed pain pills and anti-inflammatory meds to reduce the pain and stuff. It didn't really work at all. As days went on, it became very difficult to sleep because I would suddenly wake up and notice that either arm or leg was numb and very difficult to move at first, and then I was able to move it just fine, with only a little pain/discomfort.
I went to a different Dr. who prescribed antibiotic shots in case the blood work had been a false negative for food poisoning (it has happened before), given my medical history with it. The shots hurt a lot, but I did notice a slight reduction in my pain for a few days. Still, the symptoms would show up randomly and grow, peak, and then subside, like some sort of evil roller coaster.
The next stop was the neurologist. I described my symptoms to him, and he seemed quite alarmed. He did a basic reflex test, asked me to follow his pen with my eyes, asked me to extend my arms, legs, and hands, etc. After saying that it all seemed normal, he recommended I got a brain and cervical MRI. I got the results, and he said everything was fine in the brain, but he did notice a slight compression on my top cervicals, mentioning that while it would account for some of the pain, it really wasn't enough of a problem to manifest itself like it was. He told me he had suspected MS, but ruled that out after seeing the MRI. No mention of the Big One from him at all, btw, so I didn't bring it up myself. He suggested it was all anxiety/stress and suggested that I visit a psychologist. (Full disclaimer: I still haven't because I was a psych major in college . . .)
As all of this was going on, I kept reading about the Big One and its symptoms. I didn't really experience fascs at first, but as I read more and more, I started noticing them, little by little. I've had eyelid twitches before, and I always found them annoying, but they usually went away on their own after a few days/weeks. Not now. Every now and then, my left arm also goes a bit crazy. Or my left thigh. Or my right arm. The point is, they started popping up pretty much everywhere, even my butt and chest . . . It's nothing too intense and only happens occasionally, but I still get uncomfortable at having them especially when they wake me up at night because then I can't sleep after that.
However, the fascs still made me uneasy, and I still felt like something else might be lurking underneath . . . I became terrified of the late stage symptoms. primarily the inability to breathe. I then started to notice that I felt like I wasn't breathing properly and started to yawn constantly but not really pull in any air, if that makes sense. I would panic and had to create a routine of breathing/relaxation exercises to help the episodes subside, which would normally take anything from a few minutes to even an hour. I also found that chewing gum, speaking, singing (I'm somewhat of a musician), or keeping my mind occupied in general makes that seemingly go away, until I remember it, then it starts all over. I also had perceived weakness in my arms and legs. I started to test my strength during the day at random, from doing calf raises, to push-ups, and everything seems fine. I can walk around just fine unless I happen to have a cramp (no stumbling/falling down, though), but thankfully, no signs of clinical weakness up until now, which is why I haven't gone in to get an EMG done. I tell myself that I won't unless I see something more severe happen to avoid giving myself more even more anxiety . . .
Luckily, I found this forum and a very helpful post about the Big One (by someone I think goes by fishman?) He provided a testimonial from someone who has it and it went a long way toward calming me. Apparently, pain and tingling aren't really early or primary symptoms related to it, so once I internalized that, I was able to achieve some calm for a while. Also, posts like this one where people share their experiences in a positive environment has helped a lot too. I actually decided to join the forum because of the original poster, Michelle, as her symptoms were pretty close to mine.
My tingling and numbness are still there, but in a much lesser degree compared to how it started. It's mainly only in my hands and feet. The cramps and pain are also still there, but like I said, they usually only get really nasty if I have to walk around too much . . . the fascs and the breathing thing are also still there and have become my primary focus for now. All in all, I'm pretty sure it's just BFS, but the fear and anxiety of having something more severe is with me constantly . . .
One last thing that I definitely feel is worth mentioning: I recently went through a major negative emotional experience in my life, and, while it really hurt, I didn't really grieve outwardly in the sense that I didn't cry, or felt down about it too much. Maybe my body found a way to deal with it in its own way . . .
I wrote a book, so thank you if you read all of this. I would like to hear what you guys might think, or share/talk about any details that you think might relate to your own experiences.
I have also become obsessed with either having ms or als. My story is a bit different. I was on 10 mg of brintellix for 6 weeks for anxiety. I ended up developing rhandomyalysis which is muscle breakdown as my cretine kinese levels were elevated and I was hospitalized for 3 days with iv fluid flushing as a treatment. I had to get off brintellix and it was cold turkey. Only went down to 5mg for 4 days. Withdrawls were so bad: vertigo, acid reflux, dizziness, crying spells which I still have at times. My Cretine Kinese levels are back to normal. I also had multitude of tests done which show no muscle issues. So during week 2 after stopping the medication the muscle twitches started all over my body promarily in my legs which were affected by the rhabdomyalysis, along with cramps, tingling, jerking of limbs. I even had a facial twich on my left side after I had a break down where I started to cry and could feel my nerves just building up inside. The twitches are in a relaxed position and stop when im moving. I'm a little weak in general but i'm able to walk, i'm not falling down, i'm not dropping stuff. My doctor is sending me for a nerve study and for an MRI to satisfy me but that won't happen until late fall. My doctor does not believe I have any of those diseases and that it is linked to my anxiety. However, my anxiety is through the roof. It was my first time on antidepressants and my body did not respond well to it at all. I did not have any of those physical issues prior.I must say the twitches are becoming better so i'm a bit hopeful. I also find myself sounding like im going insane as I keep asking people if my muscles are shrinking. I read that rhabdomyalysis can be caused by ssris but it also can be linked to some scary issues.
So, has anybody found any real solutions to BFS yet? Please share!
So, has anybody found any real solutions to BFS yet? Please share!
I've been twitching for 7 years. It's taken over my life. I've been worried about it constantly. I've seen dozens of doctors and had all sorts of tests. They've found nothing. It sucks, but at least I'm still alive.
I've been twitching for 7 years. It's taken over my life. I've been worried about it constantly. I've seen dozens of doctors and had all sorts of tests. They've found nothing. It sucks, but at least I'm still alive.
Dang. Have you found anything at all that helps?
Anybody? Anybody found any remedies for this at all?
I know it's probably not helpful to suggest this, but relaxation techniques seem to help me. I have what I can only describe as BFS. No doctor has officially diagnosed me but they all say it's nothing and/or they're not concerned about it. I've had a negative brain MRI, clean EEG, and normal labs so it doesn't make much sense to keep on poking around for answers to something that has been, for the most part, only a nuisance.
I am comforted by the fact that in the 6 months or so I have been dealing with this, there has been no "progression" at all.
I get spasms (small twitches) in my fingers that seem to originate in muscles in my hands. There are tons of videos of this on YouTube so apparently this affects many people. See for example: https://www.youtube.com/watch?v=6WvClfl5VQo
They usually happen when I am stressed, in the afternoons, or if I do strenuous exercise. I also get little zaps from time to time but those are much less common. My MRI shows bulging discs in my neck and spinal stenosis. One neuro said that could be the cause and prescribed physical therapy. I thought it helped but it could just be because it relaxed me. The physical therapy included massage. :)
My balance, coordination, and strength have not been affected at all. Other than the anxiety this can sometimes produce (i.e., "why am I twitching?" "is it ALS?" "is is MS?"), there have been no other ill effects. I hope it stays this way or improves.
I know it's probably not helpful to suggest this, but relaxation techniques seem to help me. I have what I can only describe as BFS. No doctor has officially diagnosed me but they all say it's nothing and/or they're not concerned about it. I've had a negative brain MRI, clean EEG, and normal labs so it doesn't make much sense to keep on poking around for answers to something that has been, for the most part, only a nuisance.
I am comforted by the fact that in the 6 months or so I have been dealing with this, there has been no "progression" at all.
I get spasms (small twitches) in my fingers that seem to originate in muscles in my hands. There are tons of videos of this on YouTube so apparently this affects many people. See for example: https://www.youtube.com/watch?v=6WvClfl5VQo
They usually happen when I am stressed, in the afternoons, or if I do strenuous exercise. I also get little zaps from time to time but those are much less common. My MRI shows bulging discs in my neck and spinal stenosis. One neuro said that could be the cause and prescribed physical therapy. I thought it helped but it could just be because it relaxed me. The physical therapy included massage. :)
My balance, coordination, and strength have not been affected at all. Other than the anxiety this can sometimes produce (i.e., "why am I twitching?" "is it ALS?" "is is MS?"), there have been no other ill effects. I hope it stays this way or improves.
Sounds like you are handling it better than most. Sure wish there were some other good remedies for this. Anyone else have success stopping or greatly improving this?
Hi all, not sure if anyone from this thread is still active on the forum but did anyone have any remedies for the twitches ? I have been twitching for one year now and still so worried
Hi all, not sure if anyone from this thread is still active on the forum but did anyone have any remedies for the twitches ? I have been twitching for one year now and still so worried
Same here. Not much relief but certain exercises for posture have helped me along with relaxation techniques. Still twitching though.
Bumping this thread in hopes of someone reporting a new remedy!
I've been twitching for 7 years now, every day, sometimes hundreds of times a day. It's been miserable. I also suffer from some peripheral neuropathy.
Ive had EMGs, blood tests and multiple different doctors try to figure it out.
I'm concerned it may be Morvan's syndrome or other autoimmune disorder.
My anxiety has been so bad for years. I just want it to end. My doctor's all think I'm nuts and suffer from HA. I hope they're right but my mind doesn't agree.
This whole "pandemic" issue isn't helping either.
I'll keep you updated if things change.
I've been twitching for 7 years now, every day, sometimes hundreds of times a day. It's been miserable. I also suffer from some peripheral neuropathy.
Ive had EMGs, blood tests and multiple different doctors try to figure it out.
I'm concerned it may be Morvan's syndrome or other autoimmune disorder.
My anxiety has been so bad for years. I just want it to end. My doctor's all think I'm nuts and suffer from HA. I hope they're right but my mind doesn't agree.
This whole "pandemic" issue isn't helping either.
I'll keep you updated if things change.
What type of neuropathy symptoms do you have? I have some pain/burning in my feet and sometimes my hands. This started almost a year ago. I've been twitching though for almost 4 years.
Hello, Twitchers,
I have an important message for you. I hope this message will help some of you.
I started experiencing fasciculations a couple of weeks ago. This week, they went crazy. I started to worry, and the hypochondriac me, as usual, went playing doctors on Google, and ended in the ALS rabbit hole.
I booked an appointment with the neuro right away, and the good news is that the EMG was good. Relieved.
However, I want to share my experience and 2 cents, hoping it will help someone.
A few years back, I started having panic attacks related to my health anxiety. This anxiety seems to be hereditary. My mother and her sister got the issue.
Long story short, since it's started, It's been a roller coaster. A few years in, and I got heart palpitations (ectopic heart beats). Funny enough, just like these twitches, my heart condition is also "labeled begnin".
Do you see where I want to get now?
Yes, I am hypothesising that both these conditions were caused by health anxiety.
Think about it... Both conditions are known to be harmless, and doctors still don't understand their source/cause. Why is that? Well, I believe because their cause is the mind, which is outside of medicine's scope. Doctors can't understand the mind.
If you think I am crazy or full of sh*t, let me provide further evidence that will open your eyes. Have you heard of Ibn Sina's fear experiment? Here is a short summary generated by AI ( I will get back to you after the experiment).
Ibn Sina's fear experiment involved the following elements:
1. Two identical lambs: Ibn Sina placed two lambs in separate cages. The lambs were of the same age, weight, and were fed the same food[4].
2. A wolf: Ibn Sina introduced a wolf into one of the side cages. The wolf could only be seen by one of the lambs, while the other lamb could not see it[2].
The purpose of the experiment was to observe the effects of fear and stress on the lamb that could see the wolf. The results of the experiment showed that the lamb that could see the wolf experienced negative consequences, including crankiness, restlessness, poor development, weight loss, and ultimately premature death. On the other hand, the lamb that could not see the wolf remained peaceful, developed well, and maintained a healthy weight[4].
This experiment highlights the impact of fear and stress on an individual's well-being, even if the perceived threat does not directly harm them. It serves as a reminder of the psychological and physiological effects that fear can have on living beings.
Please note that the experiment is also known as the "AVICENNA fear experiment" or "Ibn Sina's lamb experiment"[1][4].
Citations:
[1] https://youtube.com/watch?v=Dyv86Kq4vWI
[2] http://kn-ow.com/article/ibn-sinas-fear-experiment-211/
[3] https://islamicbridge.com/2021/10/ibn-sinas-experiment-included-in-medical-textbooks/
[4] https://www.islamcan.com/islamic-stories/ibn-sinas-lamb-experiment.shtml
[5] https://youtube.com/watch?v=szww72Stif4
[6] https://www.careersingovernment.com/tools/gov-talk/covid-19/unleash-the-lion-within-the-king-of-concrete-jungle/
Alright, do you get the point now? Yea, man, the mind is able to bend reality and the physical. It is capable of way more than Twitches and health palpitations.
Now I am not saying that you should ignore your symptoms. Whenever you feel like something is wrong with your body, you should always check with a doctor. HOWEVER, if you know that you are overly anxious about your health, you must get you sh*t right.
We can't live the fearful sheep life. We only live once.
I have my decision, and I will not live it like that. I am going to face my fears and do what it takes to change my mind. My brain has been wired for years with fear thoughts, and now I have to change that. I don' t know yet exactly how I am going to do that, but I know that are many ways to rewire our brains such affirmations. I will do whatever it takes.
I have been through every single message in this thread, and I noticed that most people here suffer from health anxiety. And I genuinely believe health anxiety is the cause of these benign conditions such as heart palpitation and fasciculations. It makes a lot of sense to me, especially when considering the above experiment.
Once again, for sure, not all symptoms\diseases should be ignored and blamed on health anxiety. You should always consult your doctor if you feel that something wrong. BUT, if you know if you have the fearful sheep traits/qualities, then you better get that fixed, and enjoy your life.
Good luck to everyone here, I wish you all a wonderful life. Peace!
hotandbothered
28-08-23, 19:43
Hello, Twitchers,
I have an important message for you. I hope this message will help some of you.
I started experiencing fasciculations a couple of weeks ago. This week, they went crazy. I started to worry, and the hypochondriac me, as usual, went playing doctors on Google, and ended in the ALS rabbit hole.
I booked an appointment with the neuro right away, and the good news is that the EMG was good. Relieved.
However, I want to share my experience and 2 cents, hoping it will help someone.
A few years back, I started having panic attacks related to my health anxiety. This anxiety seems to be hereditary. My mother and her sister got the issue.
Long story short, since it's started, It's been a roller coaster. A few years in, and I got heart palpitations (ectopic heart beats). Funny enough, just like these twitches, my heart condition is also "labeled begnin".
Do you see where I want to get now?
Yes, I am hypothesising that both these conditions were caused by health anxiety.
Think about it... Both conditions are known to be harmless, and doctors still don't understand their source/cause. Why is that? Well, I believe because their cause is the mind, which is outside of medicine's scope. Doctors can't understand the mind.
If you think I am crazy or full of sh*t, let me provide further evidence that will open your eyes. Have you heard of Ibn Sina's fear experiment? Here is a short summary generated by AI ( I will get back to you after the experiment).
Ibn Sina's fear experiment involved the following elements:
1. Two identical lambs: Ibn Sina placed two lambs in separate cages. The lambs were of the same age, weight, and were fed the same food[4].
2. A wolf: Ibn Sina introduced a wolf into one of the side cages. The wolf could only be seen by one of the lambs, while the other lamb could not see it[2].
The purpose of the experiment was to observe the effects of fear and stress on the lamb that could see the wolf. The results of the experiment showed that the lamb that could see the wolf experienced negative consequences, including crankiness, restlessness, poor development, weight loss, and ultimately premature death. On the other hand, the lamb that could not see the wolf remained peaceful, developed well, and maintained a healthy weight[4].
This experiment highlights the impact of fear and stress on an individual's well-being, even if the perceived threat does not directly harm them. It serves as a reminder of the psychological and physiological effects that fear can have on living beings.
Please note that the experiment is also known as the "AVICENNA fear experiment" or "Ibn Sina's lamb experiment"[1][4].
Citations:
[1] https://youtube.com/watch?v=Dyv86Kq4vWI
[2] http://kn-ow.com/article/ibn-sinas-fear-experiment-211/
[3] https://islamicbridge.com/2021/10/ibn-sinas-experiment-included-in-medical-textbooks/
[4] https://www.islamcan.com/islamic-stories/ibn-sinas-lamb-experiment.shtml
[5] https://youtube.com/watch?v=szww72Stif4
[6] https://www.careersingovernment.com/tools/gov-talk/covid-19/unleash-the-lion-within-the-king-of-concrete-jungle/
Alright, do you get the point now? Yea, man, the mind is able to bend reality and the physical. It is capable of way more than Twitches and health palpitations.
Now I am not saying that you should ignore your symptoms. Whenever you feel like something is wrong with your body, you should always check with a doctor. HOWEVER, if you know that you are overly anxious about your health, you must get you sh*t right.
We can't live the fearful sheep life. We only live once.
I have my decision, and I will not live it like that. I am going to face my fears and do what it takes to change my mind. My brain has been wired for years with fear thoughts, and now I have to change that. I don' t know yet exactly how I am going to do that, but I know that are many ways to rewire our brains such affirmations. I will do whatever it takes.
I have been through every single message in this thread, and I noticed that most people here suffer from health anxiety. And I genuinely believe health anxiety is the cause of these benign conditions such as heart palpitation and fasciculations. It makes a lot of sense to me, especially when considering the above experiment.
Once again, for sure, not all symptoms\diseases should be ignored and blamed on health anxiety. You should always consult your doctor if you feel that something wrong. BUT, if you know if you have the fearful sheep traits/qualities, then you better get that fixed, and enjoy your life.
Good luck to everyone here, I wish you all a wonderful life. Peace!
Thank you for this post! I needed to read this today. Just started CBT after 12 years of health anxiety and finding the process confronting and hard. I’m going to keep working at it, I want to be a happy lamb! [emoji23]
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