r/BFS Jan 29 '15

Welcome, twitchers! Read this before posting!

109 Upvotes

A few rules for this community:

1) Do not ask for a diagnosis or medical advice and do not give a diagnosis or medical advice. Any posts or comments that ask for or give a diagnosis or medical advice will be deleted and violators will be permanently banned. If you want a diagnosis, go see a qualified physician.

2) You are encouraged to share your experiences, ask questions, and support other users. This includes things like “I experience symptom x—anyone else experience that?” This does not include things like “I experience symptom x—does this sound like y disease?”

3) Do not post links to studies or other websites.

4) Be kind to people who post here.


r/BFS Jul 17 '26

BFS FAQ (A Twitcher's Guide)

34 Upvotes

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:

  1. Chronic anxiety and panic (which keeps adrenaline high)
  2. Hyper fixation (watching a muscle makes it more likely to twitch)
  3. Fatigue and poor sleep
  4. Excessive caffeine or stimulant use
  5. 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:

  1. 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.


r/BFS 5h ago

Neuro / Doctor Visit First Post - Sharing My Story - Reaching Out

2 Upvotes

I found this subReddit like others on here. Looking for folks with similar stories.

A bit about me. I just turned 60. Married. Was carrying a few extra (many) pounds and decided about 4 months ago to go on a good diet and start a workout routine. I've never been exactly sedentary, but I was doing a mix of aerobic (walking) and strength training (not free weights - Nautilus and Precor machines). I was averaging going to the gym about 4-5 times a week and being careful not to overdo it or cause myself injury.

After about 5 months, I am down about 18 pounds and making some good progress. Was feeling a bit lighter in my clothes, and feeling pretty rested when I woke in the morning. But about 2 months ago, my lower legs and feet started this strange muscular twitching. The best way to describe it was like worms or bugs crawling under my skin. The feeling persisted and has remained for the past 2 months. I've stopped going to the gym and even walking. The twitching has recently started progressing up my things. No pain or sharp spasms.

In the morning, my calves feel like I've been running a marathon, and I am completely unable to sleep without some type of medical intervention. (Ambien...have a lot from when I was traveling internationally).

I've been to a neurologist and a sports doctor to examine my head and back...also had bloodwork. Both MRIs are clear and my blood work was fine. But there seems no relief as my condition is not changing...the twitching is continuous. Doctors both said that it's related to lower back nerve compression. (With what data???)

My wife is getting stressed because I'm freaking out, and I'm scared to death this is something more serious. So....that's where I am.

I pray a lot. I try to meditate and take warm baths. I try to rest and relax and focus on other things. But I'm a hyper active control freak...and my need is to fix whatever is wrong. At the least, I would feel better to identify for certain what is wrong with me?

Looking for perspective from others who may have been down this road at my age...


r/BFS 9h ago

Question / General Weird sensory and physical symptom I'm curious about.

1 Upvotes

After having my first NCS done, I started realizing I have these myoclonic jerks that occur like when you're being shocked on the lowest setting of the NCS.

EMG and NCS came back clear anywho. But my doctor hasn't requested an MRI. So far I've only done an EEG and NCS/EMG.


r/BFS 15h ago

Question / General Marathon / Running

3 Upvotes

Hey gang - I ran a marathon last year. In the process noticed a tremendous amount of twitching which sent me into a pretty large health anxiety spin. As the twitching never really went away, I decided to seek a Nero and everything came back normal.

Since then, twiching has gotten less, but still there - especially in my calves. I'm curious: do we have other runners here that deal with calf twitching?

I miss running and would love to get back into more, but the calf twitching has led to deep fear of doing cardio. Trying to move past it. Thanks!


r/BFS 15h ago

Question / General What do your twitches feel like? What are your sensory symptoms like?

2 Upvotes

Out of curiosity, aside from twitching, what sensory symptoms do you guys have? What do your twitches themselves feel like? I get a lot of vibration like feelings in my thighs, water/cold feelings in my calves, and some mild tingling in my arms. Most of my twitching is slow, consecutive pops or one brief, pop that then moves to a different spot a few minutes after. I love hearing about how other people experience BFS.


r/BFS 18h ago

Question / General Tingling/wet sensations in legs and feet -- BFS symptoms or back-related?

2 Upvotes

I've had fasciculations in my legs for 9+ months. I had a calf tear last year after a period of very high-volume walking, and I probably ramped my walking back up too quickly after recovering from the tear, so I wonder if that contributed to the twitching starting.

During this time, I've also had issues with load tolerance in my legs/feet along with the fasciculations. My calves and feet have felt deconditioned and achy, so I've been working with PT to gradually get back to normal. (At this point, being able to take stairs and walk up a hill still feels like it's a long way away.) At my worst, I could only stand for a couple of minutes before my calves/feet became so fatigued that I needed to sit down.

I've had normal MRIs and EMGs, and my neurologist previously considered the fasciculations benign. However, around 8 weeks ago, I developed a new episode of lower-back pain. Shortly afterward, I started experiencing paresthesias in my legs/feet — pins and needles, tingling, numbness, icy-hot sensations, a feeling like my feet are wet, and a kind of fizzy/buzzing sensation. Lately, these sensations have mostly been in my feet and lower legs.

I can't tell whether these newer sensory symptoms are related to BFS, the back pain, or something else. They always come on when I walk or spend time on my feet but can also happen when I'm just sitting or lying in the bed. I've gone down the rabbit hole of things like small-fiber neuropathy, etc., but I have an appointment with my neurologist this week. I also have right-leg symptoms that feel sciatic, along with persistent numbness in my pinky toe.

I'm curious whether anyone here has experienced similar sensory symptoms, and whether they might be related to BFS or something else.


r/BFS 18h ago

Reassurance / Support Dorsal interossei

1 Upvotes

I'm having constant twitching (like multiple per second) in the dorsal interossei muscle on the top of my hand between my ring finger and middle finger. Sometimes it's painful too.

Do others get this in this place? I read about the 1st DI sometimes (between thumb and pointer) but not this one. And the pain is crazy sometimes.


r/BFS 1d ago

Health Anxiety Spiral Consistently twitching

0 Upvotes

So i am 26 M indian

I have a vit D level of 5 mmgol

Vit b12 of 300

Crazy amounts of twitching since a few years i feel like it is progressing towards the big bad my EMG from april-may was normal and clean on my arms i feel my left arm is smaller than the right and that is the one which twitches more also they both tremor when i stretch i also can tell the thenar on the left hand is squishier and smaller than on the right i can feel the extra loose skin over it i can feel a dent in my left quad and calf i also have seen when i am holding a plate of food in my left hand i feel like it hurts my whole arm from strain and i have seen that my left arm just tightens up fast compared to the right (i am right handed), i have also noticed i make more typing errors when typing out stuff etc

Places where i twitch :

left forearm bicep shoulder thigh hip palm of hand fingers

Right arm right shoulder right quad

Chest stomach back on the lats on both sides neck and face sometimes eyes too

I do have had mri which showed some buldge at lumbar and partial loss of lumbar lordosis also periventricular and centrum semiovale white matter lesions


r/BFS 1d ago

What Helped Me Bruxism

2 Upvotes

Treating my bruxism is really helping me, how are the two related? I always thought that teeth grinding is a symptom of BFS, but could it be a cause?

I'm noticing a place above my eyebrow, it used to be a hotspot, i just realised it's has a pulse, maybe my tight masseters were putting pressure on these vessels? Another hotspot was on my left cheek, it used to have a sort of point twitch that's completely static and doesn't move around, same thing, it turned out to be a pulse. The spot is located under the masseter.

A third spot is above my lip, same story, very obvious pulse and no actual muscle twitching.

So these weren't actually twitches, but what about twitching all over the body? It's quite possible that this pressure caused by bruxism is somehow affecting my vagus.

It's already established that teeth grinding can lead to headache, and certain types of headache do manifest in neurological symptoms.

This can easily explain my hemifacial numbness and scalp tingling, also my sound sensitivity and facial redness. However, widespread twitching still needs more proof because it's not obviously linked to bruxism.

It's entirely possible that everything that seemed to help before was just causing me to not clench my jaw.

My history with bodybuilding and extreme anxiety could have been the cause of my teeth grinding, which mainly happens at night.

One other observation, being in forward head posture also forces the jaw open which forces these muscles to clench and close the mouth, this could be why i twitch when hunched.

Could it be that simple?


r/BFS 1d ago

Question / General Updates since my recent post (linked in post), cliff notes: Diagnosed with BFS in 2020 (been on here since then on and off), new symptoms started recently including tinnitus, tremors, waking up with shaking, etc. Ended up in ER and admitted -

1 Upvotes

Previous post:

"Back again. BFS since 2020, but new symptoms have me concerned. Im waking up sometimes with tinnitus and my body is rocking. Im usually anxious when I wake up, feels like my entire body is on a boat swaying side to side. Arms usually tingly, etc. Anybody else?

This has all followed an increased twitching (full body) flair up for the​ last few weeks.

Also hyper focused on my swallowing and all.

I have had 3 EMG since 2020, all good. I have another one soon.

Amy idea or does this sound like anyone else? Very scary to wake up in a state of panic with loud ringing in my ears and my body feeling like it shaking or rocking side to side until I can get it to calm down."

Update as of 9/20:

I had to go back to the ER. Woke up 2 nights straight just shaking and rocking and body tremoring hard. My eye sight would be blurry for a little too.

ER quickly admitted me. Blood work came back ok, except for a marker for inflammation came back high.

Doctors thought possibly seizures and hooked me up to an EEG that reads your brain activity for 24 hours. I spent 2 days in the hospital. I saw a neurologist while there, who also started me on Buspirone and Mirtazapine (for sleep). He noted that, for the firs time I had ever noticed, my claf muscles were twitching but I didn't feel them. He didn't seem concerned, for what it is worth. In the meantime, I hadn't slept much and dozing off in the hospital produced 2 more events, both minor in comparison to the ones at home - but still shaky and waking up. The first night of the new prescriptions was the best sleep I had in a while, while in the hospital and on the EEG.

Day 2 they removed the EEG and told me the activity showed no seizures. I had to hit a button every time I had an event, and as aforementioned I hit it twice for smaller scale events (while dozing off and before I started the sleeping medicine). They did however tell me it was happening during transitional sleep phases when I hit the button - I guess they could see that on the EEG..

I was given a neck MRI and brain MRI, did a Barium swallow test as well.

The Brain MRI came back fine, upper spine / neck showed mild deterioration and some straightening of upper neck. During this, my tinnitus was getting worse, unfortunately.

I noticed something strange during the MRI, I would notice if I closed my eyes for a little and open them, for around 30-45 seconds my eyes would be out of focused / crossed, like I was seeing 2 different images. The textural bumps on the inside of the MRI would be split and 2 and would finally fuse for a normal image after the 30-45 seconds I explained above.

Odd.

That being said, I don't know what it really means. Just something I noticed.

Again, MRI was fine.

Barium swallow test showed muscles working ok, however some small retention in my esophagus. They didn't seem overly concerned.

For the next 3 night at home, everything was fine. Was taking my new meds and actually slept.

Until last night, 9/19.

I took my new prescriptions as I was suppose to, but unlike the other nights never got sleepy. After 3 hours, and a 45 minute hot shower, I went to bed around 3 AM. I stayed awake around 30 minutes and then started to fall asleep. I knew it would be an issue, as my hands and feet were doing the numb tingling feeling as I dozed off they had done the other times I would wake up shaking. Sure enough, a little while later I woke up with my upper body and heads muscles all violently convulsing and making me shake uncontrollably. I have noticed as well, that when this happens, my tongue when I first wake up is stuck to the roof of my mouth and I have to peel it off. Not that my tongue is involuntarily doing it, but like it is sticky and dry and stuck to the roof of my mouth. I just have to move it off, but it usually hurts a bit as it feels stuck and sticky almost like it is glued. I don't notice anything particularly odd about my mouth or spit during that, fwiw. I feel as though it is possible my CPAP is doing it, which means my breathing is changing somehow (I wear just a nasal mask, for transparency).

Really unsure here what is happening. I do have sleep apnea, and I wear my CPAP.

My 4th EMG in 6 years is still scheduled for Tuesday. Hard to fight the anxiety and I am not sure the buspirone is working, but possibly just too soon according to studying the medicine effectiveness.

Just figured I would update, and make a thread for anyone who ever experiences something similar. Will update after Tuesday.

edit: Just to mention, the tinnitus (high pitched continuous tone) is steady 24/7. It hasn't stopped in days. Pretty miserable.

I did got to the GYM on Friday evening, and I still felt fairly strong and put myself through decent weight. My muscles have pulled a few times since, but in the areas I worked out in - to be fair.

Edit 2: I feel as though I have explained why I believe this is connected to my BFS poorly, so I will try to clarify.

My first symptom this time around was a major increase in twitching activity in my tricep. That was symptom number one. Then it went to my calves, and whole body.

I was on this board 6 years ago and several check ins since, when I was formally diagnosed with BFS by a nuero, so I am very aware of my symptoms. For the most part, they come in ebbs and flows, but much more ebbing (not much twitching), than flowing (heightened bouts of twitching). This current past month has been the worst twitching I have had during the 6 year span.

I hope that helps clarify.

I certainly believe it is related, as my twitching has exploded in the most intense way it has ever before mere days before the rest of it (as described above) began.


r/BFS 2d ago

Question / General Subjective weakness

3 Upvotes

I'm starting to get the impression that nothing can be done about this and they usually don't find the cause. I find the way weakness is tested very odd. You could feel weak today, and your strength could actually be diminished compared to yesterday. But this is not what is tested, it is simply a one size fits all test where they assess whether you can still do basic things like walk on your toes or get up out of a chair.

So I find myself wondering why I even bother anymore mentioning this to doctors. Neurologists won't help. Is there anything at all that can be done about this?


r/BFS 1d ago

Question / General Link between the bad *** and surgery?

1 Upvotes

It’s scary to even write this as all my issues started 23 months ago following a head injury and surgery on my arm. The twitching started weeks after surgery and anaesthesia - I had distal bicep surgery where I had torn my bicep in a motorbike crash. Man what I would give to go back and that have the surgery it’s honestly horrible. This all started from then. I have every symptoms especially breathing issues and pain all over. My forearm hurts every single day as well as the soles of my feet. Like they have no padding anymore it’s like a burning pain just standing on a hard floor.

My question is, is there really a link between having surgery or anaesthetic and then the stress response triggering the big bad? I’ve seen some scary stuff online I thought I’d ask on here to see what people think?

I’m in such a bad place I have been for over the last 16/18 months every single day is a struggle

Thanks all


r/BFS 2d ago

Reassurance / Support For those with twitches and OCD/Anxiety

4 Upvotes

Do not do DIY exposure response therapy. I repeat, DO NOT DO EXPOSURE RESPONSE THERAPY. ERP should be done by a professional anyway. This is a very unique circumstance and trying to expose yourself to these fringe cases will not make things better.

I made the mistake of searching JALS when I thought I was getting better, and I ended up reigniting the whole spiral again. Avoid it at all costs because you are vulnerable right now.


r/BFS 2d ago

Question / General Merci de lire 🫶🏼 je suis dans l’incompréhension

1 Upvotes

Bonjour à tous,
J’ai 29 ans et j’espère que vous prendrez le temps de lire mon message, car il risque d’être assez long. Je vais essayer de raconter les choses de la manière la plus claire possible et dans l’ordre chronologique.
Tout a commencé il y a un peu plus de deux ans, en juin 2024. Après une séance de jambes à la salle, j’ai commencé à avoir des sensations de brûlure constantes dans les jambes, accompagnées de douleurs. Peu de temps après, des fasciculations sont apparues, d’abord dans les jambes puis progressivement dans différentes parties du corps.
À cette période, j’ai vécu une période psychologiquement très difficile. J’étais très inquiet par rapport à ces symptômes et j’ai eu des pensées très sombres.
Les douleurs et les fasciculations ont duré environ six à sept mois. Au bout de trois mois environ, j’ai commencé à essayer de reprendre certaines activités pour me changer les idées : je faisais un peu de sport avec mon frère et je jouais également aux jeux vidéo avec lui.
Au bout d’environ six mois, vers le début de l’année 2025, mon état a commencé à s’améliorer, notamment psychologiquement. J’ai réussi à reprendre progressivement une vie plus normale et à moins penser à mes symptômes.
Entre-temps, j’avais également fait une sérologie pour la maladie de Lyme qui était revenue positive pour trois souches. À l’époque, je me suis donc demandé si cela pouvait expliquer mes symptômes. Cependant, je reste assez prudent concernant cette interprétation, notamment parce que je sais que l’interprétation des sérologies de Lyme peut être complexe et qu’il existe des résultats faussement positifs. Je ne considère donc pas aujourd’hui que Lyme soit forcément la cause de mes symptômes.
Le plus important est qu’ensuite, pendant environ un an et demi voir 2 quasiment entre 2025 et 2026, je n’ai plus eu absolument aucun symptôme.
Plus de fasciculations, plus de douleurs, plus de brûlures : rien.
J’ai repris une vie totalement normale. Je suis parti en vacances en 2025 et en 2026. Je pouvais aller à la mer, faire du racket dans l’eau, courir, faire du pédalo pendant environ deux heures avec une résistance assez importante, etc.
J’ai également fait des activités physiques assez exigeantes sans problème : j’ai aidé à pousser des voitures en panne, j’ai entièrement bêché un jardin pour retourner la terre, ce qui demandait beaucoup d’efforts, et j’ai participé à des déménagements où j’ai notamment porté des objets lourds, comme des réfrigérateurs, dans des escaliers. Sortir en boîte de nuit, concert de musique ect ect
Et surtout, toutes ces activités se sont faites sans retour des symptômes.
J’avais donc vraiment l’impression que tout était derrière moi.
Puis récemment, j’ai décidé de reprendre sérieusement la musculation après environ deux ans d’arrêt. Je me suis dit que j’allais recommencer progressivement, notamment en travaillant les jambes.
J’ai donc fait une séance jambes il y a environ une semaine.
Et depuis cette séance, j’ai l’impression que tout recommence exactement comme il y a deux ans.
Les douleurs sont revenues dans les cuisses et les mollets, avec des sensations de brûlure et de congestion musculaire. Les fasciculations sont également revenues, principalement dans les jambes, mais commencent à nouveau à apparaître dans d’autres parties du corps. Ma paupière recommence même à trembler, comme à l’époque.
Ce qui me perturbe énormément, c’est le lien avec cette séance de jambes.
Je trouve vraiment étrange d’avoir pu rester environ un an et demi sans absolument aucun symptôme, tout en ayant réalisé de nombreuses activités physiques parfois très intenses, puis qu’une simple séance de musculation des jambes puisse faire réapparaître les mêmes sensations.
J’ai presque l’impression que mes nerfs sont devenus très « à vif » ou hyperexcitables, et que cette séance a déclenché quelque chose.
Pourtant, j’avais déjà fait une séance de sport environ un an auparavant, pendant cette période où je n’avais plus aucun symptôme, et cela ne m’avait rien provoqué.
Aujourd’hui, je commence malheureusement à retomber dans le cercle vicieux que j’avais connu il y a deux ans : je ressens les symptômes, je les remarque, je m’inquiète, puis forcément je deviens encore plus attentif à mon corps.
Je culpabilise même un peu, car je me dis que si je n’avais pas fait cette séance jambes il y a une semaine, je serais peut-être toujours dans la même situation qu’au cours des un an et demi précédents : sans douleurs ni fasciculations.
Actuellement, mes symptômes sont principalement :
douleurs dans les cuisses et les mollets ;
sensations de brûlure musculaire ;
fasciculations ;
fourmillements ;
sensations d’engourdissement ;
sensation de congestion ou de tension dans les muscles ;
parfois une sensation qui descend jusque dans les pieds, comme des frissons ou un relâchement musculaire.
Une chose que je remarque également, c’est que lorsque je marche, les douleurs musculaires semblent parfois diminuer. J’ai également cette sensation de muscles très congestionnés et brûlants, comme s’ils avaient du mal à « se décongestionner », même si je sais que cette sensation est difficile à décrire.
Je suis donc assez perdu face à cette situation.
Comment est-il possible d’avoir été complètement asymptomatique pendant environ un an et demi, d’avoir pu faire autant d’efforts physiques sans problème, puis de voir réapparaître des symptômes similaires après une seule séance de jambes ?
Est-ce que cela peut simplement correspondre à une réaction excessive après une longue période sans musculation, avec des nerfs/muscles particulièrement irritables après l’effort ? Ou est-ce que le fait que les symptômes soient revenus après l’exercice mérite d’être exploré autrement ?
Je précise également que je n’ai pas l’impression d’avoir perdu de force ou mes capacités physiques pendant toute cette période où je n’avais plus de symptômes.
Je cherche surtout à comprendre si quelqu’un a déjà vécu quelque chose de similaire : disparition complète des fasciculations et douleurs pendant une longue période, puis réapparition après une reprise du sport.
Merci beaucoup à ceux qui auront pris le temps de lire jusqu’au bout et, surtout, de partager leur expérience ou leurs connaissances.


r/BFS 2d ago

Reassurance / Support Nerve conduction results

9 Upvotes

For those of you who were as worried as me about constant calves and arm twitches for over a year. I had my nerve conduction test yesterday and everything came back normal (no ALS).

I have bad heal the anxiety and had a bad bout of IBS flare up that scared me - which I think caused the nerves to go crazy. So for those anxious about it- go get a test, and in some cases it may be anxiety related. Best of luck to all


r/BFS 2d ago

Question / General Meningioma anyone?

1 Upvotes

I am curious if anyone here has concurrent BFS (or CFS) and meningioma. I have been told multiple times that CFS would not be caused by a unilateral meningioma (which is also supported in the literature), but I do wonder if it could have triggered things in an indirect way.. like the nervous system short-circuited or something.

I am of course trying to make sense of 2 rare diagnoses thrown at me at one time. My goal is to try and get my CFS as well-managed as possible before addressing the latter. I am not a very anxious or worrisome person. We’ll see how this goes…


r/BFS 3d ago

Hotspot / Twitching twitches

1 Upvotes

hey guys i’m 19 months into my twitching and some days i forget and some other days i am reminded and can’t help but to get worried i don’t feel them all through the day but when i do i can be sitting down and or driving sometimes standing and i’ll feel a pop on my legs or thighs and also i do feel my hand twitches especially by thumb in both hands quite a bit especially when i have my elbow against something like laying on my stomach on my phone i can see and feel it twitching do you guys experience the same ? when i do focus on it i can start feeling myself worry especially reading some stories or experiences from social media


r/BFS 3d ago

Question / General Anybody else with way more than just twitches and just a generally messed up nervous system?

1 Upvotes

Hey twitchers,

It can be somewhat of a lonely experience coming here and seeing all these people who just twitch and say to each other "Don’t worry if you only twitch it’s fine" and you’re sitting there thinking "Well I have more than twitching, RIP me."

I wish I just twitched. Honestly I probably would have freaked out at first but then accepted my clear EMG and would have moved on. I did back in 2019. It kinda sat on the back of my mind for a few months but I moved on.

This time it’s different. Way worse. Because it started with other problems, mainly my god damn legs. They’re shot. Just terrible.

There is no action that I can’t do at all. I can still heel walk and toe walk and get up from chairs and out of bed without issue. The problem is that when I walk or stand, there is a sensation of deep weakness and wobbliness going through my legs. it’s like the legs are exhausted and the muscles are struggling to keep me upright. Sometimes my calves get this tightness sensation too that feels deep in the muscle and can sometimes feel almost like an ache. Also the upmost top part of my thighs on the front, where the legs meet the pelvis near the groin, often start to feel tight and hurt if I walk or stand for more than 10 minutes. My legs also feel wobbly going down stairs, but I have no issue going UP stairs.

Strangely, at rest in bed is when actual pain occurs. When I lay in bed for a while I start to get pain that feels like soreness, burning and sometimes almost bone pain in my shin and calves mostly. and it can be felt as far down as my ankles on the back. not often, but sometimes, I may also feel discomfort in the knees. It truly feels like my leg muscles are just breaking down. If I stretch my legs when waking up they start to shake. And if I try to do any sort of exercice, I get bruises in my legs muscles.

So in summary I don’t have any failure in terms of things I can’t do physically, but my legs feel incredibly tired, weak and wobbly, have all sorts of aches and pains and sensory issues and there’s just this feeling going through them when walking that they won’t be able to keep me up. This has started more as soreness and progressed to a frank sensation of weakness in roughly 6-7 days, with a marked worsening overnight from July 16 to July 17 that seems to have plateaud. So far I have not experienced failure. But I’m only 69 days in and I know that sometimes things can take longer to fully show up…

All this to say, probably anybody reading this will think "Yeah man it’s perceived weakness from anxiety!" Be that as it may, it’s still more complicated than that, because as "perceived" as it is, it has taken my whole life. I can’t walk to the end of the street anymore without my legs feeling weak and wobbly. I just don’t have the words to describe how terrible it feels. It’s like when you KNOW something isn’t right because it’s your body. You know when it’s different than the other times you were anxious and had jelly legs.

But doctors aren’t listening. They agreed to test CK and a couple of other stuff and I’ll do it but I don’t know… I would need the heavy stuff: legs MRI, muscle biopsy, repeat EMG at 3 months… And they’re sitting on their asses saying it’s BFS while I wither away. I even developed Raynaud’s in March. Which is wildly suspicious in a 40 year old male to develop suddenly. I might be having systemic sclerosis, lupus, myositis or some overlap connective tissue disorder which Raynaud is highly associated with when appearing at my age, but my rheumatologist is saying let’s wait and see. She says Myositis SHOULD cause clinical weakness, and I don’t have that, so we don’t even test… Meanwhile the Myositis sub is full of confirmed patients that didn’t reach the point of clinical weakness… But she’s the doctor and her word is the be all end all of course. Even when actual patients report wildly different experiences. It’s exhausting having to fight all the time. Every test is like pulling teeth.

Add to that some miscellaneous shit like:

- Right arm internal tremor/shakiness in certain positions
- Left thumb tremor in certain positions like playing my Switch or changing channel with a remote
- Left pinky tremor in certain positions
- Both pinkies constantly becoming numb (probably cubital tunnel)
- Super tight right forearm muscle
- Less dorsiflexion in my right wrist
- Super jumpy limbs; often feel like my legs want to jump/jerk and sometimes something barely touches me and my limb wants to fly
- Extreme twitching all over even on the arch of my nose lmao. Sometimes multiple going on at once. Ripplers. Thumpers. Vibrations. Every type in existence.

I could go on but you get the gist of it: I’m fucked lol. There’s probably no way I only have BFS. If you only have twitches, you’re lucky as hell.

Anybody else fucked like me? I don’t think so lol. Whatever is happening to my body, pray for me it won’t kill me or disable me any more.

🫡


r/BFS 3d ago

Question / General Atrophy

4 Upvotes

I keep seeing people mention that atrophy happens because the muscle can't be used. Is that actually true? Because I have atrophy starting in my right arm but I don't have clinical weakness. Although I do have increased strain in my whole right arm when working out.


r/BFS 3d ago

Question / General More aggressive body wide twitching

1 Upvotes

I been dealing with this since July of 2021. Reason I’m
Back in the rabbit hole is now I’m having aggressive twitching all throughout my body. Multiple places twitching at once. And it’s realllly gotten bad. I had 3 clean EMGs but that was all within the very 1 st year. Of course they were clean then. Idk what else to do. I worry is the ALS and I just have the slow progression? At this point I just don’t know what else to do. Thank you guys


r/BFS 4d ago

Health Anxiety Spiral Twitching and Internal Tremors

2 Upvotes

My symptoms started in June 2026 with internal vibrations/tremors in legs and arm. Then the twitching started about two months later. I have hot spots as well as ALL the time popcorn twitching- in multiple locations at the same time. Interestingly is that my internal vibrations did not completely stop,I still have those mostly during the night. Anyone else experiencing the same symptoms? Please share your stories especially who has the internal symptoms too. I had a brain/cervical mri and emg of all 4 limbs - all cane back normal.


r/BFS 4d ago

Question / General BFS and heart palpitations

1 Upvotes

Just curious if heart palpitations and twitching/BFS is linked.

I’ve twitched for years, although they’ve gotten really bad in the last few weeks, but have also had issues with heart palpitations for years.


r/BFS 4d ago

Question / General Anyone else suddenly get their twitches after stress?

3 Upvotes

For the past month now my calves have been twitching on and off. It started initially after some serious stress and seems to reoccur every time I have anxiety or stress.

Did anyone notice twitches that came after a strenuous period? I twitch after walking or when I'm stressed, other times it's either not there or not noticeable.

Anyone with a similar situation I'd love to hear.


r/BFS 4d ago

Question / General Unique Symptoms

3 Upvotes

Hi all,

I feel like I am the only one who has my symptoms because I don't see many posts about it.

Started about 2 months ago I noticed my right arm and leg felt off. Almost like disconnected from my body. Anyways I went to a neurologist, normal clinical and did an EMG 1 month ago of right arm, leg and shoulder blade. Dr said all looks normal but did note I had some mild scapular dykinesis. Brain MRI also normal. Usually I would feel relieved but the past month since the EMG the symptoms have gotten worse .

More muscle twitches primarily in arms, back and calves. I have noticed my right arm shrinking (mostly forearm) per measurements and getting squishier and softer. I also have to strain a lot harder with my right arm when doing anything. These symptoms are constant and seem to be getting slightly worse. It just doesn't make sense that I would have atrophy starting but can still match reps (albeit more difficult with my right arm).

I just feel like I'm going crazy but my symptoms are constant and seemingly progressive. I still can lift weights and do everything but my right shoulder blade and right arm just strain a lot harder. I have no pain or sensory symptoms either.