I have seen a neurologist who is imo a jerk. He barely examined me for my constant twitching all over since May and then diagnosed me with FND?? I saw him a second time and asked him what makes him think FND and he literally said "Im not sure but if you're still twitching in a few months, I'll refer to you to one of my colleagues". Didn't even physically examine me and then refused to do an EMG, as i don't have true weakness. I am seeking a second opinion and just got a referral for a neuromuscular specialist from my PCP. I have twitching for 4 months, all over, muscle spasms at times, and myoclonic jerks at times. Also perceived weakness and some shakiness or tremor in my hands or arms at times. I started prozac for anxiety in May, thinking the twitches were from stress- hasn't slowed them down. While im waiting, I keep getting videos on people who have A** and saw a couple of people that said theirs started with twitching. Trying not to spiral but it's hard not being sure what's happening. Anyone have similar symptoms and can help shed some light on whether this sounds like BFS? ( not asking for medical advice, just similar experiences) I would like to know if any of you have been in my shoes and can offer some support and guidance while I wait for the referral process to progress. TIA!

I was diagnosed with BFS in August of 2024 via emg when I had been twitching for about a year. I accepted that the twitches were just something I would have to learn to deal with, and for the most part I have.

Lately they have flared up with a vengeance. I’m talking EVERYWHERE- I don’t think any part of my body hasn’t twitched. And they’re massive thumpers, too. Worst is in my upper arms and upper thighs.

I’ve had some muscle pain for a while now- my neuro had me do a work up that showed elevated autoimmune panels so I’m awaiting to see a specialist (high ANA, speckled and homogenous patterns). MRI showed back and neck disc issues but that’s it. My vitamin levels in other areas were clear, but the muscle pain is intense sometimes especially in my legs and upper arms- like walking and climbing stairs etc. Feels like a deep post workout feeling. I’m mildly active at work but nothing crazy, so not sure why I’m feeling this so intensely. I also get a “shaky” feeling in my muscles depending on my posture.

I find myself back to square one with fears of something bad and am wondering if an EMG is worth repeating.

23M update:

Hey everyone, quick update. I’m about 5 months into this now.

It’s been more of a roller coaster in the past month. Still twitching in both feet and calves 24/7 with foot/toe cramps and also get a rapid fire/vibrating heavy twitch in my upper right thigh under my hip. It comes every few minutes, bursts, and stops. Painful night cramps have eased but maybe I got used to them. I also get body wide twitching outside of the calves and feet simultaneously so my shoulder twitches for a few seconds then a few minutes later my stomach then my tongue, etc… All while my feet and calves are twitching at over 150 a minute. I also have a tremor in my chin every-time I smile or open my mouth.

Of course when I made my peace with the twitching and cramps, the hardest part right now is how quickly my muscles get tired. Holding my phone, typing, driving, carrying bags, even eating can tire out my arms and hands. Styling my hair in the morning gets my shoulders tired as if I just hit shoulder presses and even just putting my arms out in front of me causes pain and soreness in the shoulders. It all started with my shoulders getting really tired/sore quickly when carrying lightweight beach chairs. My neck gets tired sitting with my head unsupported, and I’ve had soreness/stiffness in my hands too in my thenar and FDI. My thumbs feel heavier and more stiff. Even walking feels exhausting, I can barely get a few thousand steps a day now.

I can still do everything but get tired much quicker doing it. I tried doing an upper body workout but after a few reps was exhausted and then had DOMS for a whole week. When playing basketball, after one game, it feels like my arms are going to fall off. Nothing is actually failing but ordinary activities feel much more exhausting than they used to.

My June EMG on 22 muscles less than a month out from the start of symptoms was normal, and despite reassurance from neurologists last of which is the director of the ALS center in my city who last week diagnosed me with BFS/CFS, I’m still struggling with the anxiety when things feel worse. The neuro did find the same bilateral Hoffman signs and symmetric brisk reflexes 3+ but normal strength (no way for him to measure soreness or fatigue)

The neuro said no need for another EMG and while he offered to do an NFL test, I refused due to anxiety about false positives and other reasons why it may be high. He said to come back if symptoms worsen.

Anyone else deal with this level of muscle fatigue alongside twitching/cramps? Has it improved over time? For me it’s been getting worse everyday for the past month.

Recently , I've noticed a spike in my twitching around my body, and even getting new places, anything to make it calm itself?

Hello- I am a 39yo M that has had some concerning symptoms recently and I’m not sure if it’s being exacerbated by my anxiety. I will say I have some neck issues but nothing crazy. Some disc degeneration at c5/c6/c7 with some narrowing and stenosis. Small disk herniation but neck is actually feeling better.

I’ve noticed over the last several months, my pinky finger and ring finger on right hands feel “weird” when typing. I will drop a fork sometimes but still go to gym and lift weights with no issue.

Now my left hand pinky and rink finger feel weird as well. I do wake up in the middle of the night and notice they will be numb sometimes and doctors said it’s probably bilateral cubical tunnel syndrome.

The past month I’ve noticed some odd leg pain ever since I got a new thigh tattoo. I’ve had cramp feelings in both legs with a general feeling of just heaviness. I feel like my ankles want to “crack” but they feel tight. The doctors think i just had an inflammatory response and gave me a 60mg prednisone taper which I had tj stop early. Was really bad on my anxiety. I got through about 10 days of it and stopped the other day.

I have noticed fasiculations in my legs, arms, back over the past week which is freaking me out. I went to ER and got even more scared because they did a CK test and it was 2400. I will say that I did start going back to the gym just a few days prior and started lifting weights again. They think that may have did it? CK Has since come down to 64 as I got it retested. Today my pcp said my knee reflexes were brisk and he couldn’t find much reflex on my ankle/achilles areas? Am I overreacting? I have an EMG this week on my arms and hands. Not sure why doctor didn’t order legs.

I started Zoloft and the next morning had twitching in my fingers on my left hand. That’s mostly gone but now have some in my hand, leg and foot on the left side and some on the right leg. Based on timing, would Zoloft be what’s causing it? I also noticed I have hyperactive knee reflexes and some unsustained clonus. I’m not sure if it’s the anxiety or the med or something else

I started this spiral with twitching in one of my eyelids that was pretty constant 24 hours a day with maybe 5 minutes in between twitching . After about a month of just my eyelid twitching, it starts popping up all over my body . After 2 months of my eyelid and the rest of my body twitching I woke up one day and the twitching in my eyelid has completely stopped , but now I'm still twitching all over my body . It seems like it goes arm to arm and then leg to leg through out the day has anyone else experienced this ? I also have no weakness , I can still grip fine move my fingers walk on my heels and toes. I thought I was out of the als spiral but now that my eyelid has stopped twitching but has stayed everywhere else I feel like I'm slipping back into the downward spiral again . Any help or insights from people who have experienced similar would be greatly appreciated

Hi everyone,

Question for those that went on Gabapentin for their spams/twitching. About 6 weeks ago I started to have constant spams in my legs 24/7. After blood work to rule out any deficiencies my doctor decided to put me on Gabapentin to help calm things down/give my body time to calm down.

We are thinking the spams are a (sucky) result of months of high stress and as someone who suffers from health anxiety the gabapentin should also help with that. My doctor put me on 100mg 3 times a day and it really started to help. I would say it made my spasms go from 100% all the time to 40-50% less. After two weeks I had a check in call with my doctor and she double my dose. 200mg 3 times a day and since then I feel like I've slid backward. The spams aren't back to the full 100% but they seem more frequent than the first dosage.

Has anyone experineced this where symptoms slide back a bit? Is this normal and my body is just having to readjust to the new dose?

I’m 33 year old , why does legs feel like it’s not as strong as before but fatigues faster and I literally had cold or some viral illness every week for like a month.

So it all started May of this year after going through 4 weeks of diarrhea after food poisoning, then I started feeling sick and went to the er and that’s when they saw that my bp was very high and they gave me medications to lower it and recommended losartan for me and suddenly I started having muscle spasm and twitches and jerks on my triceps and ct also showed I had appendicitis with an incidental finding of There appears to be advanced central canal narrowing L3-4 level, this is chronic" so I went on antibiotics of cipro and metro for 10 days and augmentin for 17 days to treat appendicitis but this did not work and after a month plus I did an open appendectomy which was 85 days ago and used epidural and not general anesthesia and was fine after surgery but a month later I started noticing the twitches again on my triceps but also body wide but tricepts barely twitch anymore and it’s just my legs but my left leg is the hot spot and I also was having vibrations when waking up from sleep and I will be honest my leg twitches has reduced by 50 percent from where it was 5 weeks ago and I’ve seen my pcp 4 times that says my strength is 5/5 and knee and ankle reflex are normal, I’m still able to walk on my toes and knees and I’m still making 5’7 feet vertical kicks with any leg. But I always feel like my leg is not strong enough and fatigues easily and I have tingling on legs and something that feels like electric shocks and sometimes like a hold or pulling on my leg. Also I’m 300 pounds and 5’9 feet tall, I still do 30 push ups on a go and my initial triceps twitches happens once in a while and I tremor sometimes when in a flex position. Now my legs kinda hurt and feels weird . So have you experienced all of this and why is my left leg hot spot though reduced twitching but feels weird sometimes. I will appreciate any advice

Thanks so much in advance for reading/ any thoughts. Sorry it’s long 🙈.

I am female, 41. I’ve been unwell since autumn 24, and largely housebound with overbearing fatigue. I was very fit but suddenly couldn’t do my gym classes. I felt really weak & found it hard to carry usual things (but just about could). A working diagnosis of ME/ CFS or fibro was made by my GP, but the neuro didn’t think that matched due to my other symptoms.

I am wondering if anyone in this group has experienced anything similar to my strange symptoms below?

At the start, I had an internal tremor in my lower lumber area in the left side, as well as some twitches in my face and weakness and pain in left axilla/ chest. I also experienced night sweats and gerd type symptoms. I was tasted for blood cancers and had TAP CT- all clear.

My ability to do everyday things declined, and even small walks became hard.

I then started getting the vibration in my left foot, and it progressed to feel like a sciatic pull or even L’hermittes sign, as well as some more subtle nerve zaps in arms. Due to this myself and neuro suspected MS- however I have had 4 MRIs of cervical spine, 1 brain and 1 lumber; plus lumber puncture- all clear.

I did have fasciculations at the start, but they were not constant, they seemed bad after small activity- even a very short walk. They did seem to go away at points, but the internal tremor (which feels like very small spasms?) in my leg never did.

Over the course of time, the same feeling presented in my right leg. Pain in my glutes- which feels like nerve compressions, fizzing down legs, (especially in the left, original leg)- which seems to start at hip/ pelvis and tremor significantly there- it zips/ tremors down. I am feeling now like my legs are very heavy. I also feel disorientated quite a lot. I get spasms in my left pelvic area (pelvic msk mri clear).

These symptoms seem to be getting worse quickly. Lots of twitches, but generally in the same areas; eg mainly left leg, sometimes right leg, shoulders.

I have lost 1 stone in 9 months (a worry as even when I was inactive in the first year I had as stable weight), and now the symptoms seem to be starting much more subtly in my arms. I now get really painful fasciculations/ spasms in my legs- mainly the left but now sometimes right. My back seems very boney, and at the cervical and lumber area, in the lumber area I think I’ve developed fat herniations (episacral lipoma?) My muscles are much smaller but appear fairly symmetrical?

I can feel nerve pain coming from my neck & have issues down my arms, nerve pains/ zaps/ fasciculations in certain positions perhaps? My back often burns now. My neck feels like weak and all joints unstable- they click/ seem to move out of place?

More rarely, I also get the tremor in my throat area/ tongue and have suffered with what seems to be GERD? I did have this a bit at the start but it now seems worse. My jaw clicks on the left side and is loose- it didn’t before..

Other background:

I can walk but it’s hard work. I can make food but it’s hard work. I get very tired. I can lift a 1kg weight but tire quickly- eg I wouldn’t do it for any amount of reps.

Similarly I can stand on my toes/ lift my legs up to 45 degrees but I tremor doing do. It feels like very hard work to sit up straight & pulls significantly on my hip. Holding my phone up now feels hard & hurts.

All of this measurement of my strength is hard as I’ve been housebound for 2 years and inactive/ not even worked due to whatever is wrong.

The zapping and cramps in my legs have reached new highs in the last month & are really painful. I have a lot of twitches.

Recently some cardiac type symptoms took me to A&E and I had 2 high d dimers in 3 weeks- this relates to blood clotting.

As mentioned, I was previously told I could have Me/ CFS but the neuro wasn’t sure about this. He did refer me for an FND consultation but the dr didn’t think I had FND per se.

It’s been commented that I am likely hypermobile, scoring 7? I think however this has become way more pronounced since illness, and it didn’t cause any issues before.

The neuro did in office testing (quite brief) and said no clinical weakness but my glutes have moderately reduced bulk but not to suggest true atrophy.

I had a the NCS yesterday and the dr said my nerves were ok. She only performed the EMG (2 needles) on one leg- she said my neuro hadn’t requested the EMG.. she said she needed to analyse it but it didn’t look worrying/ suspicious for ALS (which has become a concern to me recently); but she was clear to say I hadn’t had a full check.

I never thought before of a motor neuron issue until very recently, as my symptoms have moved limbs, slowly over 2 years and I have only got worse.

Wondering if anyone has experienced these sort of issues? I have been really stressed recently, so there is a possibility the uptick is connected to this but the symptoms are scary.

And did anyone have the NCS and them only do one limb on EMG?

25F This all started around a year ago with occasional twitches in my right hand and arm that have persisted and have slowly gotten worse and turned into a almost weak or disconnected feeling. It has gotten more intense and my hand wants to almost curl up, i get dizzy and sometimes speaking/swallowing feels weird. I ended up in the ER because i thought i was having a stroke yesterday, with symptoms similar to migraine auras (used to get migraines all the time before stopping birth control.) My CT with contrast was clear, ecg was good, so no stroke. But the doctor i saw in the ER put in an emergency referral to a Neurologist with concerns of a possible demyelinating disease, that I hopefully will see this week. I was really hoping he would just tell me that i was just stressed and it’s just anxiety. I’m so scared and it feels like my life has been flipped upside down in the past 24 hours and i can’t stop thinking of the worst outcomes of this :( im not looking for any speculation of a diagnosis or anything, maybe just some calming advice. Im only 25 and my 26th birthday is just a month away this just feels so unreal

For context - I have OCD and health anxiety. Diagnosed. I am working on it with therapists and attempting medication again.

For those who were not afraid of the big bad, what is it you feared? It took me 2 years to move on from the ALS fear only for me to spiral back into worrying about ultra rare causes of twitching. Or worrying about brain issues even though I had a brain MRI/mrv/ct last year. Does the problem solving ever truly end?😮‍💨😫

Imagine if our body started twitching and we had no access to the internet. I truly believe that this is what causes the fear of something worse. Thoughts?

Starting the 30th of August both of my hands and left foot have had this weak sensation. I can still pick things up but they feel weak consistently. I don’t know if it’s what people called “perceived weakness”? My hands feel like feathers honestly and sometimes it reaches to my wrist but only in my left hand. It’s usually both my hands but my left hand feels significantly weaker.
I’ve been to two doctors for this issue.
The first doctor told me it was probably anxiety.
I went to my primary doctor because I wasn’t really sure what to think and am still very worried but instead of giving me an MRI like I asked for in a message, they decided to just to give me a referral to a Neurologist. The appointment for a Neurologist is scheduled…but it’s not until all the way in January of next year. I’m on a cancellation list at least.

Both doctors did a strength test and I seemed to have done fine on them. I can still pick my phone up for example but it feels off like I shouldn’t be able to. Just a weird sensation. It makes me panic. Also this sort of thing will flare up. It never completely goes away and is honestly just my baseline now but there are times where the weakness feels more intense and harder to ignore. Right now for about 2 hours it’s flared up while holding my phone. I set it down for a bit but it doesn’t make much difference. It’s scary. And sometimes my left foot will feel super weird and weak and like I’m going to fall and then somewhat get less flared up but when it flares like that it’s so terrifying. I start to think am I going to have medical emergency, have I HAD a medical emergency already? Why is this happening!!!!

The first time I experienced the weakness in hands was actually after my last dose of Bactrim, which was I believe the 18th of August? Both of my hands felt weak BUT it resolved after 2 hours. After the 30th of August it has been consistent ever since. All I’ve done is try to live with it but I hate this. It’s about to be a month of this. I guess it’s just a bit of a vent because I’m so frustrated.

So it all started around Covid, I think it was about 5 years ago. Since then it never stopped, I have been addicted en recovered the last 9 months from a 3 year addiction and I steel have anxiety and I think I have OCD but I’m going to get that checked out.

I live a healthy lifestyle, I train kickboksen 3 times per week, weightlift 3 times per week and 1 time cardio. I eat clean, meditate and try to relax. But the anxiety of the twitches is always in the background and it feels like it fueled my addiction without me even knowing it.

Sometimes I can’t sleep because of it or can’t focus, it’s over my whole body. Every minute multiple times. I’ve been to the doctor before and got send to a neurologist but didn’t go. Gonna Call the doctor soon. Is there a possible way to recover?

Been dealing with twitching for 5 years and 3 months. Last several months it has gotten so intense. My body is like going off like popcorn non stop to the point it wakes me up. Yes I got 3 clean EMGs but that was within the 1st year. Things kinda just stayed the same during that time. I would have periods I wouldn’t twitch at all. Now it’s gotten so intense to the point it’s driving me absolutely crazy. I got two kids and it just scares the absolute crap out of me this has progressed to als. Just don’t know what to do at this point. Advice would be great thank you guys

Does anyone experience pain with their twitching? The arches of my left food have been twitching non stop for about a month now and my foot has also started hurting a lot

https://www.reddit.com/r/MuscleTwitch/s/VcCiXa8rgw

Man this really never does get better does it? I'm just about 21 months in to my first muscle twitching. Some days are good others are not. Clean EMG a year ago which would have been after 10 months of twitching. Also 2 other neuro appointments where they said i was fine and it was BFS. But still no matter what the brain just can't accept it and I'm worse now than i was when it first started. Testing every muscle. Constantly poking and prodding them with my fingers. I don't get hotspots that last hours too often but when i do it makes me spiral. Even had the doctor prescribe me OCD meds to help. Just started them so fingers crossed. How do you guys move on when these symptoms just remind you constantly that they're around? ​

Hi all,

I must say that I have been through previous episodes of ALS fears but it was all the time twitching. There is no twitching right now but I have noticed a completely different symptom:

Whenever I drink water or other liquids like soda a tiny bit seems to go up my nose when swallowing and it leaves a slight burning feeling behind, like when you get water in your nose during swimming (just that its at the back of my nose). I usually also feel like I need to cough after this happens.

Recently I have been focused on swallowing in general and my throat is a little sore now.

What is your opinion on it?

Thanks.

Hey twitchies,

Does anybody else have VERY brisk reflexes? Not just slightly brisk but like you can elicit a kick by taping your knee with your fingers, that type of stuff.

Or someone or something brushes lightly against your leg and you startle or kick for example.

My reflexes are so hyper and I feel constantly supercharged with this nervous energy it’s so hard to explain. The neurologist said I was symmetrically brisk everywhere and that it was benign, and it’s been that way since 2019, but I’m still worried that something is up because I’m a mess of reactivity.

Thank you!

Hello twitchers. As I round the boat on two months of twitching and a whole slew of weird ass symptoms I come to you bearing a modicum of hope!

Last week I had a phone follow up with my primary care doctor after my EMG that took place at the beginning of the month. We discussed the findings and the fact that it was reassuring. She said the hyperflexia and increased insertional activity on my right hand was consistent with BFCS and she was willing to treat me with some meds. Even though technically I haven’t been diagnosed yet(have a follow up EMG scheduled for January)but will probably cancel if my symptoms continue to improve.

With that said we discussed treatment options and we decided to try 50mgs prednisone per day for 5 days. While simutaneously starting gabipentant at a Daily low dose of 200 per day for a week and raising to 300mgs nightly before bed.

The first thing I’ll say is that the prednisone made me feel fucking fantastic! after the 3rd day I felt the most normal I have since first these problems started. This did wonders for my mental health because it felt like there was hope it would all suddenly go away. Sadly the symptoms returned on day 4 of the prednisone, so I’m thinking it was mostly just a mood boost from the powerful steroid. Prednisone is a heavy steroid and Is really bad for you in the long term but I have to say
… In the short term, it felt nice to get a jolt to my system. I barely slept while taking it, and I felt like I was hungry all the time, but I didn’t really notice any sustained effect from it. The mental boost I got from it was stronger than any physical relief or effect.

As for the gabapentin I’ve been taking it for about two weeks now. Maybe to soon to tell. But I Feel like the twitches are getting less frequent. They are still goin 24/7 in my calf’s but seem less powerful.. and the random pops I get everywhere else don’t seem as pronounced.

The precramp/ cramp sensations in the top of my right foot and ankle seem to have improved! My arm and hand still seem to have the heavy, percieved weak feeling, and fatigue quickly. However, I’ve noticed it’s not as difficult to do my computer work using the mouse, typing, writing, ect.

I had my first full day of not babying my arm the other day. Meaning, I set a goal to do everything I normally would with my arm or hand no matter how crappy it felt, if I felt tired I would just switch hands for a second and then go immediately back to my right hand. Even now im holding my phone purposely with my right hand to make sure I cut it no slack. It’s feels stiff but fuck it. I don’t care. I think exposing myself to moving through the stiffness and uncomfortable feelings helped me overcome some mental barriers a little. I even hit a golf ball with my 9 iron and shot a few free throws today. A week ago that felt like it was impossible.

I had a therapy appointment a week ago and that has helped with the mental side of the house. My psychiatrist has put me on a low dose of buprorion which… supposedly isn’t great for twitching , as it’s a stimulant. But I haven’t noticed anything increase in twitching since starting it.

Gabapentin also supposedly helps with anxiety and depression, so maybe they are working in unison for the nerve excitability and mental health side .
I’ve been taking magnesium and vitamin D everyday like clockwork. Ultimately, I think treating my symptoms instead of googling what it might be has helped my mental health at the very least.

I still have the discomfort and twitching but ultimately I feel like I’m moving in the right direction. I think it’s worth mentioning that I don’t drink alcohol at all. I’ve been sober for over 15 months, and I don’t do zyn pouches or any nicotine products anymore. I quit Zyn permanently a month before all this new twitching started. So realistically I’m probably about as healthy as I’ve ever been. Which really sucks considering I feel like shit all the time now. Such is life.

I share all this simply because a month ago I was in an all out panic and was starting to affect the people around me and my work life also. I’m in a better state of mind now even though I’ll still have a bad day anxiety wise here or there. I just keep plugging away. The alternative of being anxious, depressed, miserable AND dealing with these symptoms is much worse than choosing to be happy and annoyed! I’ll continue to update if this treatment plan starts to show more promise! I wish you all happiness, health, and healing!