u/InformationNo7156

For those who have been dealing with BFS for years, I am wondering how you have dealt with the secondary symptoms/side effects. Specifically the mental ones. Like the anxiety that lingers. I have began controlling my anxiety through different outlets. Psychiatric nurses, therapists, clinicians, coaches...the whole nine-yards. I can say my anxiety has gone down considerably. When this started in May, I was up 24/7 google searching, scrolling through Reddit, TikTok, ALS forums, chatting with AI. I no longer do that. I am actually able to operate completely normally now.

What I still deal with is the constant nightmares. On a good day, I would wake up from ALS nightmares once or twice. On bad days, I can wake up three or four times in the middle of the night from ALS related nightmares. This has been happening every single night since the start. It's been a little over two months now. Sometimes, this does make me wonder if I have some type of brain issue going on. FDT/Psuedobulbar, but not remarkably enough for me to spiral. This really stumps me because my anxiety is practically gone.

How long does it take the brain to ignore these fasciculations? I also find myself getting other symptoms like being prone to aches and soreness easier. I've been having weird myoclonus even in the day time now. I would feel an electrical pulse that jolts my leg. I hope this is just a benign overstimulated nervous system. I've never heard of people getting "hypnic jerks" in the daytime while being fully awake. I've also been noticing I get more neuropathic itches where it feels like someone is lightly tapping a toothpick on my finger tips or around my body. Sometimes, my subtle myoclonus jerks is also accompanied with a sudden itch! Unsure if this is unrelated, but I have also noticed my knee joints pop as if it were like you were cracking your fingers. It's not painful, but I do wonder. Happens every time I begin moving.

Today marks exactly two months since my explosion of twitches began. I guess I can say it's less intense now? But I am still having the lingering anxiety, especially since my EMG is coming up in August.

Some twitches can actually even be painful, probably because of the sheer amount. Not the fact that they are painful in of itself.

I'm worried that I am beginning to have an onset similar to Aaron Lazaar who was diagnosed with ***.

Started with random body-wide twitches and became 24/7 the day of. I am a month and a half in waiting for an EMG still. This will be around the 4 month mark. So far, strength and reflex tests were apparently normal. But they were not very comprehensive. What concerns me is that my 24/7 widespread fasciculations basically happened so suddenly on a specific day. I currently deal with muscle twitches and pulling. Sometimes, I feel my muscle pulling without it feeling like a normal twitch.

My twitching pattern is I still twitch and pop all day everyday, but sometimes I have an explosion of twitches (flare ups?) And they start calming down, but I still twitch.

I don't have definitive weakness yet, but I have questioned this many times.

Last night, I woke up at 1 AM from an explosion of twitches mostly in my legs. These twitches felt rather violent.

I have considered pausing university and being with family for a while until I get a hold of what's going on. But unfortunately, I had to postpone my graduation already due to financial reasons. Which means I won't be graduating until I am 23.

I don't want to trigger people by describing Aaron Lazar's case, but apparently his situation started out identical to mine.

Not diagnosed with anything yet. Waiting for an EMG in late August. I've been pretty anxious and have been waking up with nightmares. I would have nightmares I'm out on vacation with family and start noticing weakness. Sometimes twice in the same night, as today. I'm experiencing a weird tired and fatigue feeling as I recover from a sickness, but I'm not actually sick. At the same time, I feel numb and can't really worry if I wanted to. I just sit there. I think I'm also depressed because I can just think about the past, feeling like my life was just normal in April. And I would start crying, thinking my life is over.

I wake up wondering if I have progressed into weakness or if my body is just relaxed. My grip strength is fatigued right from waking up. All these symptoms are just weird. It's hard to differentiate whether other symptoms are from "BFS" or not. Like random aches and soreness.

Symptoms:

• Widespread fasciculations 24/7
  • Can be triggered by slight movements (coughing, sneezing, laughing)
    • Even in sleep
  • Usually seems to get better when walking
• Twitches that feel like zaps, pokes, or popcorn
• Wiggling that feels like incomplete cramps
• Weird neuropathic itches
  • Happens on finger tips or toes
  • Very sudden and brief
  • Probably had this for most of my life. Just hyperfixated
• Myoclonic jerks
  • Unsure if this is twitching, but can also happen in the day time when using fingers. My finger would just subtly jerk
  • I also deal with hypnic jerks occasionally trying to sleep

Other symptoms:

• Weird vision blurriness and eye pressure
  • Presumably side effects from anti-anxiety meds I started because of this
  • Feels to be going away since stopping
• Burning patches of skin (in the beginning)
• Severe anxiety spikes and depression
  • Uncertainty is painful
• Tiredness and fatigue
  • Don't remember getting sick.
• Inconsistent/changing bowel habits

Is it normal to have subtle aches and soreness throughout the day? Do we usually just ignore these?

Began my first dose of 5 mg Buspar everyday since Friday. I stopped today, so almost a week. I started noticing vision problems that past few days and eye pressure. It was like things got blurrier for me. Even the screen right in front of me. I already have bad vision. My eyes require a power -3 contacts/glasses

I was already dealing with severe health anxiety, and had to be put on meds with the least side effects.

How long will this last? My last dose was 6/10 (yesterday) at 11 AM. I don't understand why I still have slight blurry vision when it's over 24 hours.

For the past month, since the fear of ALS popped up into my mind, I’ve been crying more than usual. The first time, I was crying really bad and had to hide it from my mom. She knew I was concerned about my twitching. She caught on that I was crying.

I would have crying spells after that. But a few weeks later, I was out with my parents and I started crying. I was overwhelmed. I think it was because I saw groups of friends and family. I thought I was appreciating life enough, and I was severely afraid of ALS.

Then, I would have crying spells throughout the day thinking about ALS and not being able to take care of my parents as they get older. I’m an only child, and I have no siblings. I truly think a lot about my friends and family.

Yesterday, I was at dinner and I was tearing up when my mom brought up my fears to another family member. I was so worried.

I didn’t know this could possibly be something called Pseudobulbar Affect which is known in people with ALS / MS / Dementia. I guess my crying is not completely unprovoked. But I would not easily be triggered like this from stress before. On the other hand, it’s like I’m facing death.

I just don’t know what to do. My EMG can’t happen quick enough. I had to begin anxiety meds, but it hasn’t helped with the anxiety or twitching.

21M

Everyday, I’ve been noticing I feel much more fatigue when it comes to my arms when I wake up. I’m not sure if this is a cause for concern. The first few minutes, my phone feels heavier. Squeezing a stress ball feels harder. But I can operate normally and that feeling goes away after a few minutes.

Is this my body transitioning from a relaxed state? Or something I should be concerned about?

Is this a concerning symptom that makes me one of the very rare BFS with accompanying abnormalities that would turn into ALS?

Did an EEG. Eyeballs were fluttering when I had them closed. Hope it’s nothing serious. I think it got worse because I was fixated on it and trying to control it more. Unsure if it’s related to BFS.

I always hear that some ALS patients, before noticing their weakness, overcompensate without knowing.

My right leg definitely feels like it’s working more than my left. But at the same time, my left leg always feels more relaxed. Most of my weird twinges and aches happen on my right leg. This is where my perceived atrophy is even though I’m right dominant. Side note: the inner pelvis area is where the twitches feel more crampy. That’s also the one where the joint makes a clicky/pop noise when I suddenly move around like when you crack knuckles.

When I was 19, I had a gym trainer tell me one side of my shoulder was lower.

If this is seriously something sinister, this sucks because I would’ve had a better chance at getting into Harvard.

When I started first wearing glasses, I had this weird sensation in the bridge of my nose. It felt tingly, light, and uncomfortable. I guess I got used to it?

But after heightened anxiety and stress recently, I've began being hyper fixated on sensations. And it's come back. It's not painful or anything, but it feels so uncomfortable that I constantly have to take it off to press on the bridge of my nose.

Well…

It’s been about a month and a week since I started twitching all over my body, 24/7.

To this day, I’ve seen a PCP and a neurologist. Did clinical exams such as strength and reflex. Reflexes were fine at both doctors, but at the neuro, I noticed both my knees weren’t reacting whereas when my PCP hit my knee, both reacted. Strength test fine as well.

I’m still waiting for my EMG. Unfortunately, mine isn’t until August. But I am trying to get one sooner because I want to have summer with a peace of mind before I start college again.

I am still Google searching every day, almost 24/7. I am watching health anxiety podcasts. I keep reading Reddit posts and stories, going back years. I am questioning everything from strength, to balance, to weird twinges and aches. I can’t stop.

I have no siblings, so I’m always chatting and going out with friends. I also have parents who I care deeply for. It’s hard to be in the moment.

It’s hard for me to sleep, because my body definitely feels weaker. I can’t tell if this is normal because when you sleep, you start relaxing. But when I’m sleeping, I don’t feel completely asleep because I am constantly scanning. Sometimes my arms can feel weaker. Or my legs. I always wake up in panic every morning seeing if I have a difference in walk or grip. My grip does feel fatigue the second after waking up. I have a stress ball by my bed. But after a few minutes, it’s normal?

I’m so afraid to make movements when I’m resting. Especially like when I’m trying to sleep because it’ll set off an avalanche of twitches.

Also I start freaking out when my body starts relaxing as I fall asleep because that’s when it feels “weaker.” But that’s normal when your body is asleep? This is a total mind game

So , I’ve been having twitches where the pops feel like micro cramps. It’s 24/7.

I don’t get full on cramps, but the writhing sometimes can be mildly painful sort of like cramps. Would this be more in line with BFS or BCFS?

Or is this what people describe as pre-cramps?

In April, I had routine bloodwork done for yearly check ups from my PCP. At first, they saw that my potassium was high. Then they ordered a new lab, and I got it checked again. Second time, potassium was normal high.

I tried to bring this up with my PCP. She said it’s fine. I went again when I started twitching, a different doctor from the same PCP office didn’t mention anything about it. When I went to the neurology, she checked my previous blood work and said it was normal.

I tried to tell her that my potassium was high the first time they checked. I gave her my second order, and she said it’s normal and within range but I asked her “isn’t it on the high end of normal?” All she said was that sometimes there can be variations.

Wouldn’t high normal still be concerning? Especially given that my previous work before that showed it was high? No matter who I bring this up with, they don’t seem concerned.

But apparently high potassium can cause twitching and worse, MUSCLE WEAKNESS. I want to make sure I don’t get misdiagnosed for ALS. I also don’t want to be properly diagnosed with ALS because that’s what I fear. So far I only have perceived weakness.

Third day into Buspar. I’ve been taking it at around 8:30 in the morning the past two days. I overslept after spiraling from health anxiety last night. I woke up at 10:00 AM. Is this inconsistency bad enough to derail the build-up?

So obviously, many of us in this community often have anxiety on the severe end.

What I am wondering is, how I would not freak out over the years as I naturally age. Old people naturally get skinnier. Sometimes their hands atrophy just from normal aging. At some point, I know if I live long enough. This will FREAK ME THE HELL OUT. I wouldn’t know how to differentiate between that type of muscle loss and the big bad.

How do we know if or when it works? How do we know if it doesn't work for us?

My nurse practitioner told me I had a high anxiety baseline. But I felt so used to it after dealing with it for years I'm sure. What does calm even feel like? How do we know if we feel calm? How do we know it's not placebo? My severe anxiety is off and on. How do I know?

21M
So my body is starting to finally react after years of chronic stress and anxiety.

One day, in early May (last month), I started having crazy muscle twitches all over my body. Like a “normal” person, I Google searched it. Well, I basically was told I had a serious terminal motor neuron disease. And of course, the twitches got out of hand and now happen 24/7 with no end.

I went to a neurologist, and so far my clinical exams are normal. I haven’t lost strength, and my reflexes are fine. But I still have doubts. But this just adds more stress to what I was dealing with.

Before this, I was going through debilitating stress for months. Everyday was fight or flight. Even more so, before that, I had insurmountable trauma and anxiety from OCD.

Is my body catching up? Is my body telling me to slow things down?

Have you guys ever deregulated your nervous system like this?

Coffee, teas, chocolates…

Even though BFS might not even be from caffeine, have you given them up?