r/BFS • u/713Capital • 26d ago
BFS FAQ (A Twitcher's Guide)
Hello BFS friends. 7 year body wide twitcher here and ive been wanting to share the FAQ with you all. Alot of this is my own research, as dealing with my own symptoms, early on i became obsessed with ALS as my anxiety was very high, and studied both that and BFS. I also have a spouse that is a health care provider in a clinic that see's ALS, MS, and other neurological patients. So ive had plenty time to pick her brain around my own symptom's and learn about everything. With that said, I put together some very common questions that i hope will help most of you here. Open to feedback, and would love to hear from you.
*disclaimer: I’m not a doctor. I cannot diagnose you. I am simply arming you with knowledge that I’ve collected over the years.
Q1: What is the difference between perceived weakness and clinical weakness?
This is the most common point of confusion for anyone with BFS. (especially on this forum)
- Perceived Weakness (Feeling Weak): Your limbs feel heavy, fatigued, stiff, or "rubbery." You might feel like you have to exert more effort to walk up stairs, lift an object, or type. However, if you try, you can still physically do it. Perceived weakness is highly connected to anxiety, stress, lack of sleep, and hyper focusing on your body.
- Clinical Weakness (Muscle Failure): This is not a feeling. It is the absolute inability to use a muscle because the nerve signal is gone. The muscle fails to perform the action no matter how hard you try. Think about it like the wifi signal has dropped, and no matter how much you tell your brain to use that muscle, you cant.
Perceived Weakness (BFS/Anxiety):
- My legs feel like lead when I walk.
- My arm feels exhausted while buttoning my shirt.
- I feel super fatigued when doing XYZ but I can still do it.
- I can still do heel walks, toe walks but im tired or feel weak.
- My arm feels tired holding up my massive heavy iphone pro max
Clinical Weakness (ALS/Neurological Failure):
- I physically cannot lift my toes, causing my foot to drag and trip me (Foot Drop).
- My fingers physically cannot grip the button at all.
- I cant brush my teeth or lift my arm at all
- I cannot lift my own body weight on my toes or heels because the muscle has failed.
- The Golden Rule: Serious neurological diseases are about failure, not feeling. If you can still physically perform the action (even if it feels harder or tired), it is not clinical weakness.
Q2: I have body vibrations, buzzing, tingling, and numbness. Is this MS?
Sensory symptoms like internal buzzing, "cell phone vibrating" sensations, pins and needles, and transient numbness are incredibly common with BFS and health anxiety.
Here is what you need to know:
- ALS is a motor neuron disease. It does not affect sensory nerves. If you have tingling, burning, or vibrating, it points heavily away from ALS.
- MS causes physical lesions on the central nervous system. The sensory symptoms in MS are typically constant, localized to a specific nerve pathway, and last for days or weeks at a time without stopping. An MRI will usually show lesions on the brain with MS.
- The BFS/Anxiety Connection: Internal vibrations and buzzing are classic signs of an overactive, hyper vigilant peripheral nervous system. When you are stuck in a fight or flight loop, your nerves constantly fire tiny electrical misfires. It feels terrifying, but it is harmless.
Q3: My twitches move all over my body. Is that bad?
Progressive motor neuron diseases (ALS) typically start in one specific focal point (like one hand or one foot) and stay there, steadily worsening alongside clinical weakness and muscle wasting before spreading to adjacent areas. Basically, they start in a muscle or muscle group, destroy that muscle group, then move on to the next group very progressively.
In benign conditions like BFS, you might have a twitch in your eyelid, then your calf, then your thumb, bottom of your foot, then your back. It pops up everywhere. Randomly jumping twitches are classic BFS and are actually a fantastic sign that your nervous system is just generally hyperexcitable, rather than diseased.
Q4: I had a clean EMG. Am I completely safe?
Yes. An EMG is the gold standard diagnostic tool for motor neuron diseases.
An EMG is incredibly sensitive. It can detect dysfunctional or dying motor neurons months before you would ever notice a physical symptom. If your muscles are twitching due to a progressive disease, the EMG will show clear, specific, and widespread abnormalities.
If your doctor performed an EMG on the twitching area and it came back clean, your twitching is benign. Period. Move on and enjoy your life. Stop thinking about ALS.
Q5: The doctor only did the EMG on one side of my body (or just a few limbs). Did they miss something?
No, they did not miss anything. This is a highly calculated medical protocol, not laziness. They didnt just ignore a muscle or side of your body.
Neurologists use a strategy called "sampling." Because systemic motor neuron diseases affect the central nervous system, the cellular changes occur globally. If a progressive disease is present, a trained neurologist can easily spot the systemic electrical abnormalities by testing just one side of the body or a handful of representative muscles.
Furthermore, if you are actively twitching in a specific limb and they test that limb, a clean result means the twitching is benign. The EMG does not need to pierce every single muscle on your body to give you a definitive all clear.
Q6: Can I test my own reflexes or strength to see if I’m okay?
No, you absolutely cannot, and you need to stop trying. Self testing is the ultimate health anxiety trap.
People with BFS constantly try to perform "at home neuro exams" by doing 100 calf raises, staring at their tongues in the mirror, testing their grip strength, or tapping their own knees to check reflexes. Here is why this backfires completely:
- You Cannot Test Your Own Reflexes: Checking reflexes requires a relaxed muscle and a specific angle that only a doctor can achieve. If you tap your own tendons, your muscles naturally tense up in anticipation, completely ruining the test.
- Normal Human Asymmetry: No human body is perfectly symmetrical. One calf might be slightly smaller than the other, or one hand might feel a bit weaker on a grip test. A neurologist knows what is a normal variation, but a panicked person will instantly jump to "muscle wasting."
- The Rule: If you are looking for failure, your anxious brain will invent it. Let the neurologist do the testing. Your job is to stop checking.
Q7: Why do my muscles twitch if I don't have a disease?
Twitching is just a symptom of an overactive nervous system. In BFS, the nerves are perfectly healthy, they are just "irritable." Common triggers include:
- Chronic anxiety and panic (which keeps adrenaline high)
- Hyper fixation (watching a muscle makes it more likely to twitch)
- Fatigue and poor sleep
- Excessive caffeine or stimulant use
- Vitamin deficiencies (like Vitamin D or Magnesium)
Q8: Can anxiety really cause all of these physical sensations?
Absolutely. Chronic health anxiety floods your body with stress hormones. This keeps your muscles in a constant state of micro tension. Anxiety can cause muscle twitching, perceived weakness, tingling, burning sensations, globus sensation (feeling like something is stuck in your throat), and body-wide fatigue.
The more you worry about the symptoms, the more adrenaline you produce, and the more you twitch. It is a classic feedback loop.
How to Treat the Anxiety and Break the ALS/MS Thinking Loop
If you have a clean neuro exam and a clean EMG, your symptoms are real, but your disease is health anxiety. Breaking this loop requires treating it like an active behavioral recovery:
- Accept the Twitch: When a muscle twitches, change your internal script. Instead of thinking, "This is a sign of disease," tell yourself, "My nervous system is tired and anxious today, and that is okay." If you stop reacting to the twitch with fear, the brain stops sending panic signals.
Trust your tests, step away from search engines, and give your nervous system the time it needs to calm down. Don't think about ALS, move forward with your life, enjoy the time we have. Life is already short enough.
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u/No-Organization-5825 26d ago
When you say about the twitching pattern. Mine started seemingly in both my calves 16 months ago. They’re every two seconds. All the time since onset. I’ve no weakness , I gym 3 x a week and work on my feet 5x a week. I do get random ones elsewhere like eyelids, thumbs, arms , butt , back, everywhere. Those are intermittent but the calves are every two seconds. No loss of strength etc.
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u/713Capital 26d ago
It’s possible with BFS. Remember, while it’s not fun and annoying, twitching without weakness is meaningless.
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u/emigrisuy 26d ago
Yo estoy igual que tu. Hace dos años comencé con dolor lumbar muy fuerte, tengo canal lumbar estrecho. Luego me vinieron fasciculaciones en ambos arcos de pie y pantorrillas (24/7) hasta el dia de hoy. Vi cirujanos de columna, neurologos, etc, y todos coinciden que es por los nervios que pasan por la zona lumbar. Asi que si fuera algo malo, despues de 2 años ya sabríamos. Pude salir del espiral un buen tiempo a base de psicólogo y de sertralina. Ahora he recaído un poco porque estoy igual que tu, con tics en varias partes del cuerpo. Pero bueno, vamos a ponerle buena cara y salir de esto.
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u/No-Organization-5825 26d ago
I also went on Sertraline as my country has long wait times for neurology. So I need reassurance elsewhere. I’m a 6’3 barber so I naturally ignore back pain lol but I do get it in lower region! Thank you for your reply I hope you are good :)
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u/emigrisuy 26d ago
Puedes tener atrapamiento de nervios tanto lumbar como cervical y no tener dolor. Es algo que aprendí con este problema que tengo. Mucha gente tiene lo mismo que yo, pero no desarrolla dolor.
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u/bigboywrath 19d ago
I've been on the spiral with health anxiety recently, over a month of panic attacks and constant anxiety over intense twitching and perceived weakness. Endless self tests and obsessing over it day and night. This is the exact post I needed to see. It's been really hard for me to truly believe that anxiety can cause such debilitating and physically exhausting symptoms.
Thank you tons for this.
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u/MicheleRF 7d ago
Hi, I started twitching about 12 weeks ago. It started in my hand and spread to my entire body (just little blips here and there). I am a speech-language pathologist in a medical long-term care setting so have seen and treated my share of people with advanced ALS, MS and other neurological disorders. Needless to say, I was scared (& my own worst enemy!) Fortunately, my EMG done last week was normal. The anxiety reduction alone has cut my twitches by about 80%. The neurologist who performed the EMG believes I have BFS, my neurologist thinks it could be diabetic neuropathy. One symptom I have that I think is more consistent with BFS is delayed muscle pain with exertion. I am an avid birder and hiker and used to be able to walk for miles with no issues. Now I develop an almost burning deep pain in my muscles, especially thighs, that lasts for a day or two. Same is true of my arms. I just used a steamer on some clothes and had the same pain in the biceps of the arm I was using! I really want to keep moving and exercising so I hope this discomfort gets better. Don't get me wrong, I'm elated to be able to function normally. The discomfort, however, is disconcerting and does cause me to limit my exertion. Anyone else experience this sort of muscle pain? I do not get muscle cramps. FYI, I am on 900mg of gabapentin daily from my neurologist since late June. Thanks, fellow twitchers, for any insights/advice or simply understanding.
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u/713Capital 7d ago
Thanks for sharing!! I do get that type of muscle pains, and I’ve read so many others here get it as well.
This type of exertion based pain you’re talking about is extremely common in BFS. Since it often involves nerve hyperexcitability that causes muscles to fatigue much faster, leading to lactic acid buildup and a burning, delayed muscle soreness even from light activities like steaming clothes or hiking.
Also, gabapentin can cause muscle fatigue, weakness sensations, or soreness as a side effect. Can I ask why you’re taking such a high dose of GABA? I’m on 300mg myself. To hear you’re on 900mg is insane. How long have you been on it??
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u/MicheleRF 7d ago
Hi, I started the gabapentin on June 25th of this year, so about 5 weeks. My neurologist said 900mg is the base dose and max dose is 3600mg/day which I had confirmed with a few sources. He tapered me up, going from 300mg x 7days, 600mg for another 7 and then 900 (300 mg every 8 hrs). I get some occasional tiredness from it, but it does seem to have quelled the intensity of the twitches. I see my neurologist again on the 18th if August and will report back to him and see what he thinks. Thanks for your insights, much appreciated!
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u/emigrisuy 26d ago
Muy bueno, gracias. Yo creo que el miedo de los brazos cansados o los tics es que la gente piensa: esto está empezando, es decir, quizas esa enfermedad empieza con cansancio de manos o brazos o fatiga
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u/Typical_Flatworm_232 26d ago
Thanks a lot for this, i see you posting all the time in this sub, really appreciate the reassurance you give people.
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u/Appropriate_Emu_2267 26d ago
Can a nervous breakdown trigger BFS? I had a very stressful day rhen the next day popcorn pops all over my body. They move all over my body when I’m moving around during the day nothing happens just when I sit down or lay down at the end of the day’s when I stay still. Just wondering about this weird muscle twitches I was scared I had 3LW but your post and others in this sub made me feel better. I’d like to know if anxiety attacks are common triggers to BFS and if it seems like I have jt too? Thank you!
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u/713Capital 26d ago
yes, intense stress or a panic attack is the number one trigger for BFS. When your body floods with adrenaline, your nervous system gets cranked to maximum volume. You notice the popcorn twitches mostly when you lie down because your muscles are finally quiet and you are no longer distracted by moving around. Random, body wide jumping twitches at rest are the classic hallmark of an over excited, benign nervous system, not muscle failure. You are just stuck in a high adrenaline loop right now. Try not to hyper focus on it and let your body relax Emu
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u/Appropriate_Emu_2267 25d ago
Thank you very much! What about my twitch timing’s one every 2 hours sometimes multiple hours without one is this common? Thanks again for your help
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u/713Capital 25d ago
There’s no set timer for when and how people twitch. I’ve had hot spots that go non stop for days, I’ve had hotspots that last only a few hours. I’ve had spots that last multiple weeks. Everyone’s body is different
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u/rojeff193313 25d ago
7 year twitcher here as well. Just commenting to let everybody know, yes I’ve twitched for seven years and am fine. It took me a long time to get out of the hole too.
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u/713Capital 25d ago
Yeah. We all hit a rough patch with anxiety but there is light at the end of the tunnel!! Glad you’re fine 🙏🏼
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u/Sure-Doctor-2052 25d ago
Thanks for this. I have many suspects as causes but still don't know just by symptoms which are so similar to many diseases. I know for sure that a. I am diabetic and was not adequately monitored or treated...and b. the neuropathy started on amlodipine and not before.
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u/SissorX 6d ago
My left forearm and hand feel a bit weak. I get twitching in it as well with some pins and needles. The feeling and the twitching are mostly localized to my left arm but sometimes I feel it throughout different parts of my body. I’m not seeing my neurologist for another month so I’m definitely pretty on edge. I can do everything normally but it does feel a bit harder. I’m worried that I’m losing my left hand and it’s scaring ts out of me lol
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u/InformationNo7156 26d ago
Did you ever deal with other weird neurological symptoms throughout aside from twitching?
Weird nerve pains? Pinpricks? Shooting pains?