Whenever I sit down after going for a walk around the block I twitch like crazy. Primarily upper legs, hips, butt, etc.

Can anyone relate? Im not sure if Im just so tight that walking loosens things up or what

I have had BFS for over 10 years now. I was hoping that this subreddit would be a place that we could discuss this syndrome, maybe share tips and tricks for stuff that can quell a twitch, or what we notice triggers them, etc. Every time I visit, it’s only posts from people with severe health anxiety convinced they have als or atrophy when every test proves it’s bfs beyond a reasonable doubt. I’m not going to lie, I have struggled with health anxiety myself. I am in no way judging, but I’m wondering if these als posts are doing more harm than good?

Well tomorrow is the big day where I get my EMG.

Just to share a timeline - 39 Male 185lbs

Last year January is when I noticed both calf twitching 24/7. Went to doctors in May who said it was likely nothing. Twitching started on right quad and literally as a line going through quad. Dr sent me to Neuro in November

Physical exam:
Strength was good no weakness anywhere
However, I did have Bi lateral Barbinski so he referred me for MRI on spine and Brain.

MRI -December and January
Brain - Clean

Spine:
Disc bulge(s)
Lateral recess narrowing right side
Foraminal narrowing

Now EMG tomorrow.

I’m still very active and weight-lift 5 times a week. 3 days of the week I will do stair master on level 8 for 20-30 minutes without holding on. All my exercises have increased including lower body see attached screenshots.

I do have 24/7 quad twitch and atrophy the best way to describe it is like a string wrapped around my quad that looks like an indent.

Again my day to day activity has not been impacted I’m way more in shape this year than last year and cardio has improved.

The positive Babinski and line through my quad it was scares me the most

See you on the other side guys,

Hi all,

This is the first time I’ve heard about this subreddit, roughly 4 years into my twitching and the day before my first doctor’s appointment in my new city. Truly, I’ve never felt all that understood by those around me about the constant twitching and shaking hands and weird feeling movement that comes with stress, so posting here comes as a relief. I feel like my stress causes me physical pain along with the muscle stuff, and every day is a constant battle to act normal and be productive while my body’s on high alert and acting weird 24/7.

I know in my brain that my condition isn’t life threatening, that it eases when I’m relaxed and I shouldn’t be worried, but I think health anxiety is the reason a lot of us are here. I’m worried I’ll turn up with brain cancer or ALS or something that’ll get me, even though I’ve had blood tests and hormone tests and ultrasounds and consultations with my last doctor who thought it was anxiety related twitching as well.

I’m feeling a mix of ready to find a medication that works (took one in college, maybe worked for a little bit but stopped) and worried about actually finding out what’s going on with me with some certainty.

Any exercise I do boosts my twitches and tremors.

I have been having symptoms (twitching and leg weakness for 2 yrs) and hand weakness for 8 months. All perceived. Not clinical weakness.

I just used the dynamometer with my “weak” right hand and it marked 62 (i think it’s kg?) Anyways more than the 58 my non-weak hand marked. However as soon as i let go my right hand started popping like popcorn and tremors all over it, specially in the palm.

Hi everyone! Just checking in 2.8 years after my first symptoms and fasciculations.

I’ve been dealing with MANY fasciculations every single day, all over my body, for the past 2.8 years. My last EMG was done 7 months after symptoms started, and it was normal.

So far, I haven’t noticed anything else abnormal. However, I recently went back to the forum after years away and saw a post from a guy saying he had fasciculations for 4–5 years before eventually developing weakness. He was a 36-year-old man. That really caught my attention because it goes against the logic we usually learn here, what we see online, and even what doctors generally say. Right below his post, another person replied saying it was fake and that he was impersonating another user from the group. Even so, I think that alone was enough to increase my anxiety.

I’m still doing everything normally. Sometimes I feel like one side of my body looks smaller than the other — for example, one glute — but I try to remind myself that body asymmetry is normal.

I wanted to ask you all: after 2 years and 8 months since the first fasciculations, would you personally feel reassured?

I still have multiple fasciculations in all possible areas of my body — at least one per minute.

Big hug to all of you.

Hi All,

I am concerned I have may ALS/MND and it just hasn't shown yet on EMG/Clinically.

Here is my story from around August/September 2025.

1. Symptom Onset & Course

• September 2025: Pain began in the right shin, initially attributed to running/exercise.
• Gradual development of:
  • Perceived right‑leg thinning
  • Reduced power in right leg (per physio - May 2026)
  • Prominent tendons around right foot/ankle
  • Widespread fasciculations (face, neck, stomach, upper legs, arms, shoulders, feet, hands, chest)
  • Subjective weakness, especially in legs - they are getting weaker
  • Pain and reduced walking tolerance
• Symptoms have slowly progressed despite normal investigations.

2. Physio Findings

• Reduced power in right leg compared to left
• Right calf and shin thinner
• Prominent tendons on right lateral foot
• No structural injury identified

3. Specialist Assessments

Neurology - February 2026

• Normal tone, power, reflexes, coordination
• No UMN or LMN signs
• No clinical evidence of MND
• Discharged with option to repeat EMG/NCS in 4–6 months if symptoms progress

Rheumatology - March 2026

• Normal power
• No synovitis
• No objective muscle wasting
• No Autoimmune disease / myoistits
• Right leg thinner but not pathological - 50cm v 48cm Thigh

MSK - December 2025

• Normal strength except mild right‑leg asymmetry
• No structural cause for symptoms

4. Investigations

Blood Tests

All normal or negative:

• ANA, ENA, dsDNA, ANCA
• CK - normal
• ESR, CRP
• Complements
• IgG
• Myositis immunoblot ➡️ No evidence of inflammatory, autoimmune, or muscle‑destructive disease.

MRI

• Shoulders: Normal musculature, no denervation or fatty atrophy - March 2026
• Brain: Non‑specific T2 hyperintensities (age‑typical) - February 2026
• Spine: C5/C6 severe compression; no cord signal change ➡️ Only structural abnormality is C5/C6, which may explain arm/hand symptoms but not body‑wide issues.

EMG/NCS (Feb & May 2026)

• No fibrillations, no positive sharp waves, no chronic reinnervation
• Mild paraspinal polyphasia - back
• Left thenar amplitude 6.25 mV vs right 11.5 mV, but no denervation
• Left thenar muscle smaller and slight hollow compared to right

5. Current Symptoms (May 2026)

• Leg weakness, especially thighs/calves; walking reduced due to weakness and pain
• Body‑wide fasciculations (face, neck, stomach, upper legs, arms, shoulders, feet, hands, chest)
• Constant twitching in:
  • Left thigh
  • Left bicep
  • Left thumb pad
• Possible atrophy, especially left thumb pad
• Leg pain (mainly right)
• Reduced walking tolerance
• Sleep and issue
• Anxiety very high

Anybody had similar experience? Thoughts?

Hi all. Just wondering if most of you in this community are dealing with pain or do you only have fasciculations? Did it start as pain and then twitch, or twitch first and then pain or no pain at all? I’m just curious.

Despite normal EMG and testing I really don’t feel like I can move on. This whole process has been so traumatic for me and I’m trying so hard but I just can’t stop thinking that the worst is coming for me. Every morning I wonder if I’ll be able to walk or use my hands again. I’m scared.

Late February - Some tricep twitching, it went away after about 3 days.

March 25 - Had a cramp for the first time ever, specifically after standing on my toes and reaching for something. Went away after about 2-3 days.

April 1 - Twitching began violently and aggressively in my right thigh, then migrated to my left thigh in the same day. Extremely aggressive twitching. Mostly at rest.

April 4 - Twitching started migrating to other parts of my body. Glutes, biceps, triceps, shoulders, back, abs, obliques, forearms, calves.

April 15 - Twitching became more prominent in my calves.

April 20 - Whenever I laid down and tried to sleep, I noticed pins and needles/tingling in my right foot, my right shin, my right knee, and it’ll alternate between my two hands. This went away after 7 hours of sleep.

April 24 - Frequent twitching moved from my calves, to my forearms and knees.

May 5 - Muscle twitches have now become very infrequent. Still there, but just not as often. Maybe 1-2 twitches every 2-5 minutes.

May 16th - Now noticing twitching hotspot moved to my right knee.

No muscle weakness, but waiting another agonizing 6 months just to “be in the clear” of *** is certainly not fun. Anyone’s experience or opinion would help me out tremendously. I’m 29, male.

It is strange how quickly your relationship with your own body can change.

Before all of this started, I never paid much attention to the small sensations happening beneath the surface—an occasional ache, a twitch, a moment of tingling. My body was simply something that carried me through daily life. I did not constantly monitor it, question it, or fear it.

That changed over the last year.

The first symptoms were not muscle twitching. They were sensory issues—tingling, nerve pain, unusual sensations throughout my body, and a growing feeling that something was wrong neurologically. These symptoms became concerning enough that I underwent an EMG and nerve conduction study in February. At that point, widespread twitching was not yet the primary issue.

The testing did not point toward ALS. Instead, there were suggestions that metabolic or nerve-related issues could be contributing to what I was experiencing. I learned that sensory symptoms generally are not considered typical for ALS, and that many cases of twitching and nerve irritation ultimately turn out to have non-fatal explanations.

But uncertainty is difficult to live with.

In May, I first noticed muscle twitching in my right quadriceps. At first it seemed isolated—something odd, but easy to dismiss. Over time, though, I became increasingly aware of twitching in other areas of my body. By August, the twitching had become more widespread, and I also noticed tightening sensations in my calves.

That was when the fear truly began to take hold.

I started researching symptoms online constantly. At first, I was looking for reassurance and answers. Instead, I found myself trapped in a cycle of fear. Every article, every forum post, every worst-case scenario seemed to pull me deeper into anxiety. The more I searched, the more hyperaware I became of every sensation in my body.

I began checking myself constantly.

I would examine muscles for signs of atrophy. I would test my grip strength, compare body parts, flex muscles repeatedly, and analyze how I walked or moved. Sometimes I convinced myself something felt weak. Other times I worried I was noticing progression. My mind became locked onto my body in a way that was exhausting and relentless.

There were periods where I felt awake physically but mentally absent, as though anxiety had consumed my ability to simply exist normally.

For about two weeks in particular, things became overwhelming. I was not functioning like myself. I struggled at work, became emotionally unstable, and broke down multiple times. Once with my boss. Once or twice with my wife. Sleep suffered, my thoughts spiraled, and it felt as though fear had taken over every quiet moment of my life.

What made it harder was that this was not happening in isolation. Other health concerns and stressors were already weighing on me. Worries about nerve issues, fears about chronic disease, concerns about kidney or liver problems, medication anxieties, nausea, and the emotional burden of trying to understand what was happening all seemed to pile together into one overwhelming experience.

The uncertainty itself became traumatic.

At the same time, there were also important realities that I struggled to emotionally accept. My reflexes continued to do well. My strength remained intact. The neurological testing I had undergone earlier did not point toward ALS. Rationally, I knew there were reasons to believe this was something else. Emotionally, though, fear does not always listen to reason.

Eventually, I realized the internet itself had become part of the problem.

The constant researching, symptom checking, and exposure to frightening stories were fueling my anxiety far more than helping me. I noticed that when I stayed away from social media and medical forums, my mind became quieter. The thoughts did not disappear completely, but they stopped dominating every moment.

I also sought help from a therapist, and that genuinely made a difference.

The fears still exist sometimes. I would be lying if I said they do not. But therapy helped me understand how chronic stress, uncertainty, and hypervigilance can completely distort the way a person experiences their own body. It helped me begin separating the symptoms themselves from the spiral of fear surrounding them.

Through all of this, I have learned difficult things about mortality, uncertainty, and control.

I would not say I am comfortable with death. Few people truly are. But this experience forced me to confront the reality that life is fragile and uncertain whether we acknowledge it or not. In a strange way, I have become a little more at peace with that reality.

Not because I stopped caring about life, but because I realized how much fear was preventing me from living it.

I also understand now how isolating health anxiety and neurological fear can be. When someone is trapped in that state, reassurance often feels temporary. Every sensation becomes evidence. Every twitch feels meaningful. Every unexplained symptom feels catastrophic. Even when tests are reassuring, the mind keeps searching for certainty that may never fully come.

And yet life continues.

What matters most now is not endlessly chasing fear, but learning how to live despite uncertainty. Seeking answers when appropriate, continuing to care for my health, but also refusing to allow fear to consume every relationship, every moment, and every part of my identity.

This experience changed me. It strained me emotionally, mentally, and spiritually. But it also taught me empathy for others who are going through similar fears. I understand now how deeply people can suffer even when nobody else can fully see it.

If someone else reads this while going through the same cycle—checking symptoms constantly, fearing the worst, losing themselves in online research, and feeling trapped between uncertainty and panic—I want them to know that I understand that fear.

I have been there.

And while I may not have every answer, I do know this: what we do in the midst of uncertainty matters. How we cope, how we grow, how we continue loving people and living our lives despite fear—those things shape us far more than fear itself ever will.

Hi! I’m new here but I have recently been down the *** rabbit hole and it’s been horrible. The thing is, I do have real symptoms which are concerning me. I am 22 (f) for reference.

It started with a feeling of weakness in my legs about a month and a half ago which I of course googled and found ***. I started noticing twitching in my legs, arms, abdomen, etc. I realize that twitching is a symptom of many things but I have been weak for a while. Like my arms shake after small exertions like holding my phone up for a while or carry around something for a bit. It also causes soreness the next day as well. I haven’t had any issues actually picking things up or walking or anything like that but the shakiness and weakness scares me.

The weakness has been going on for a while I will say. I am also agoraphobic due to a panic disorder so I live a very sedentary life-style. I went to my pcp for fatigue and headache issues and got blood tests done a few months back and I do have vitamin d and iron and b-12 deficiency. I fixed the b-12. the iron and d have gotten better but I’m still deficient. But even after supplements I’m still dealing with this.

I also have a very high heart rate and get tired extremely easily doing menial tasks like cleaning my room or doing my laundry (walking up and down 3 flights of stairs with bags in my hands) so much so that I have started avoiding theses tasks until I absolutely can’t anymore.

I have been diagnosed with panic disorder, ocd, and cptsd, and migraines but no other health issues. I am so scared. I have tried to set up with my neuro but awaiting a response and I worry that it will take months before I’m able to see them. I read so much conflicting info about this disease I don’t know what to believe. Mostly, I’m just so tired of this constant fear. Should I be concerned?

Wondering what I should expect. I was slotted in for a neurologist appointment. Seems like my doctor is pretty young, so hopefully they will also have new knowledge. I would be almost three weeks in since the 24/7 twitching began. I know this is too soon, but I wanted to have a peace of mind and bloodwork done to address any deficiencies.

The doctor seems pretty young and right out of training, so hopefully there will be some new knowledge.

What should I expect?

Some of my symptoms:

Widespread twitching at rest/sleep

Twitches that can feel like light shocks/popcorns

Twitches that feel like they want to turn into cramps

Stiff and sore legs

Hotspots around the thigh and calves

Extreme and debilitating anxiety

Weird skin sensitivity/burning

Has anyone had this? Its like a tiny cellphone going off in.my thenar and its not my pulse. Its rhythmic. A little concerned.

Long time lurker and have never posted. I am a 43yo male. I started with body wide twitching when I was 23yo and had horrible leg pain. I had an EMG back then on one leg and it was clean. Eventually after months it went way. Over the years I had very minor twitching and usually only when I had the Flu or Covid etc. Cut to March of this year and I started twitching all over but the kicker was that both my arms were and are currently hurting very badly and FEEL like I have zero strength. In fact, just this week the doctor said I wasn't clinically weak, but she could feel my arms shaking in resistance. So I received EMG results today and they were totally clean. Doctor tested right arm, left leg, thenar, back and neck. I'm left to try to figure out how my arms could be in this much pain, but I am less fearful now. Point of this post is to say you can be having a lot of really bad feelings in your extremities and twitching everywhere and most likely its BFS or BCFS (if that's still a thing) it was in 2005. Now I am being tested for Autoimmune and Lyme. It's hard to do, but don't let this consume you. I'm telling you right now my body is twitching and my arms and hands are killing me, but I'm going to move on. Over the last three months I missed out on so many things with my children and wife. This is a wild ride, but keep your heads up folks!

I know I post here a lot already I just like to get a lot of people similar stuff. But does anyone feel like some of the twitches are like heavier or way thicker than other twitches on body? My last and triceps get hit with these like thick twitches that feel way heavier than my small thigh/calf/forearm/hand/face ones. Might be because of the size of the muscle obviously but just seeing what others have experienced with such things.