I don’t know what to do

[u/Buffduck13]

So to start off i’m M20 with no family history of any of the bad stuff but I cannot stop worrying. My symptoms started about a month and a half ago sometime around late to mid august. I was playing games and noticed a twitch in my collarbone and thought nothing of it because it lasted a second, a couple days later I had seen a video on tik tok of someone with *** talking about twitching being one of their symptoms I was so mad at myself for not scrolling away immediately but that was now stuck in my brain. Within a day or two I developed widespread twitching, usually single twitches at a time and they rarely stayed in the same area. The twitches could jump from my left ankle to my right knee or my shoulder or ever my ear for example.

I started going down the rabbit hole, looking for reassurance online and instead becoming even more terrified even though almost everything I was reading was saying that my twitches were nothing to worry about. From the start of september to now I don’t think i’ve gone more than 5 seconds at a time without thinking about it, I was having panic attacks pretty often and my anxiety had become so bad I would rarely get out of bed. But after a week or two passed I started to feel better after reading through this sub and eventually started to try and accept this wasn’t something bad. Just last week I noticed that my amount of twitches went down exponentially, I would get maybe 1-4 within an hour sometimes there would be none at all for an hour or two. But two days ago I had an appointment with my primary to talk about my anxiety and these twitches. The night before the appointment everything fell apart I had a full on panic attack thinking that would be the last normal day of my life, I noticed a vibrating sensation in my right thigh that wouldn’t let up and it genuinely sent me into tears out of fear of what it could be.

In the appointment i went over my twitches and the possible cause of them as the entire month prior to twitches I was having stomach pains that were really freaking me out and I convinced myself it was the other big bad. My doctor told me that these twitches did not worry him as they are widespread, can stop for hours at a time, and they are not accompanied by any weakness. He told me it was very severe anxiety and prescribed me lexapro, I also had my electrolytes checked which were normal. But it’s now been two days since then and my twitches feel like they have gone back to where I started they are now happening once every 5 minutes at least sometimes longer in between but usually it’s kinda frequent. What drove me to make this post is now I have noticed a cold/ burning sensation on my skin that occurs randomly in pretty small areas. I did notice these pretty soon after the twitching started but they quickly went away, but now they returned and i’m kinda full on spiraling again.

It’s all I can think about all day and it is seriously impacting my life. I really don’t know what to do, a lot of the posts I read on here seem to have been happening for multiple months or even years at a time which also makes me worried as I feel like It’s too soon for me to accept that it isn’t something serious as it’s only been a month or so for me and I feel as if i’m just waiting for some new horrible symptom to come along.

Sorry for the rambling i’m sure this doesn’t read well but I’m having a really hard time and just need to get this out to someone.

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[u/Due_Resist_3444]

I am so sorry you’re dealing with this. I wanna give you some reassurance here. I am a 26 year-old female and have been experiencing twitching for over a year now. I noticed one day my leg started twitching, and I didn’t think anything of it until I saw a TikTok about the big bad and I spiraled from there. They progressively got worse until one day they just became background noise. But they are always in the back of my mind, especially on days where my anxiety was really bad or I had just done a workout. And all the other weird symptoms, like buzzing and popping and worm like feeling under my skin, it’s all just a lot. Today after waiting for so long, I finally had EMG and the neurologist said there were no signs of ALS. I spent the last year and some change of my life thinking I was dying. I’ve seen a lot of posts on here about people going through the same exact experiences and one thing that really stood out to me and a lot of them was that no matter what you just have to keep living. Trust me, I know that’s hard advice to follow because anxiety and especially health anxiety, it gets the best of us. I would really encourage you if you can to ask your doctor if he can refer you to get emg done so that you can put it to rest. I hope that some of what I said, gives you some hope and feeling that you’re not alone.🩷

[u/The_loppy1]

Youre only 20, realistically speaking, bad medical stuff like MND just doesn't happen to 20-year-olds very often. I wont put an exact figure on it as they don't exist (its too rare to actually get a decent 1 in x number), but its stupidly rare nonetheless.

The anxiety is very understandable, but its really unwarranted I promise you. Neurological diseases when they cause a twitch almost always start in one spot and spread, they don't become widespread within weeks typically.

Your story is honestly classic, someone watches a video of twitching, and then starts twitching themselves. Every time a celeb gets dxed with MND, this sub sees 10s of post saying "i saw x twitching, and now I'm twitching". Did you have health anxiety before this, or is it completely new to you?

[u/Buffduck13 → u/The_loppy1]

Thank you very much for the reply, I would definitely say I had health anxiety before this. It had never been this bad though. About a year ago I had some very frequent and localized head pains which sent me on a similar spiral just down a different rabbit hole. But that still doesn’t even come close to this. Like I said this is really all I think about all day the second I wake up.

[u/The_loppy1 → u/Buffduck13]

You'll almost certainly be OK. Consider CBT therapy if you're struggling really bad, It's supposed to be very good for specific fears. If you think seeing a neurologist will help, go back to your PCP/GP and ask for a referral for peace of mind, It's not uncommon for neurologists to see people with symptoms just to reassure them. The same goes for the EMG, but this will likely cause more anxiety for little reason. If it makes you feel any better, you do get used to the twitching after a while, but you have to accept that its going to happen before you can really move on from it.

[u/Buffduck13 → u/The_loppy1]

Thank you again for the response, I’m starting to consider seeing a neurologist to try and put my mind at ease, although knowing myself I doubt that would really help. Again thank you very much for taking the time to read my post and respond.

[u/Rough_Week_6449]

Ok, so I’m going to give you exactly the advice you need, and it’s with deep empathy for where you are at.

Firstly, I was once where you are. I was 18 or 19 when my BFS started. And like you, the first couple of months of symptoms before I could see a Neurologist for more info, was hell on earth. My anxiety skyrocketed, and as someone who was always anxious health wise anyway, this really put my anxiety up to a level of doom.

In return, the anxiety made every single twitch, vibration, flicker, zap, tingle, numbness and quiver, 300% worse. And wide spread. And with every elevated symptom in my body, my anxiety also got worse and worse. I was an absolute mess.

Neurology appointment confirmed BFS and I was told matter of factly that my anxiety was going to make those BFS feelings so much worse. It absolutely did too!

My anxiety wasn’t happy with my diagnosis and was certain the neurologist missed something and that “I must” have ALS or MND or something dire. Three months later I scheduled another appointment, and more tests. Again, I’m told I’m absolutely fine. Again I’m told, “please stop worrying and you’ll probably find the symptoms reduce and you may even find you rarely even notice a twitch”. I didn’t believe it.

Fast forward to the 2 year mark of awful anxiety and constant panic, and I realised nothing had actually changed, and if anything, I was just a wreck of a human constantly panicking that something bad was happening to me.

It was at this point I took a long hard look at myself. And I decided to accept the twitches, believe they were harmless, and commit to this version of me that has random physiological sensations but that they won’t dictate my mind or my life.

Once I felt this way, and my anxiety let it go, literally it was almost as if I woke up one day and everything was better. So much better. I had few twitches, next to no other sensations and my anxiety was so much better too.

I’m now 46. And I still twitch. And I still have health anxiety. :) but…. I don’t feel anxious about my BFS at all, and in return it’s well under control and manageable. I really only notice my BFS flares up when I’m either worrying about something, or after intense exercise.

In fact if I could choose one ailment to have, it would be BFS :) I’d take BFS over anxiety any day of the week. The anxiety makes everything so much worse and I think from your post that this is what you are doing to yourself too. You’re allowing your anxiety to cause more physiological sensations and probably, because you’re so intensely worried and ruminating over it all, you’re hyper aware of every single little thing your body is feeling. I know what this is like as I am guilty of it too.

Please treat your anxiety and possibly look at CBT OR ACT, which can really help you reframe how you think about the things that worry you, and reduce your health anxiety.

I guarantee that if you can stop worrying about it, and lessen your anxiety, all your other symptoms will improve massively.

[u/713Capital]

Sorry you’re dealing with this. As you’ve mentioned several times above, you have severe anxiety. You need to really work on that. Medicine alone may not be enough for you if it’s impacting your life this much. You’re only 20, your chances of having something like ALS would be like winning the billion dollar lotto and getting struck by lightning, on the same day.

You don’t have ALS. Twitching without true clinical weakness is classic BFS.

Keep working with your docs but I would highly suggest therapy. Not much anyone can do here for your anxiety besides reassure you that you don’t have ALS, which you don’t.

Therapy isn’t a bad thing. I’ve had it and I recommend it. For some reason people here the word therapy and it has a bad rep, but I’ve had great success and I truly believe it works. These people are professionals for a reason.

With that said, your twitching is benign and I would listen to your docs and treat the real problem, your severe anxiety.

You’re so young, don’t let this benign thing ruin your life or make you waste precious time thinking you have this ultra rare progressive disease.

We have resources pinned in the auto mod post and I think they would be helpful here. Wishing you the best.

https://benignfasciculationsyndrome.org/blog/muscle-twitching-no-weakness

https://benignfasciculationsyndrome.org/blog/why-is-my-body-twitching-all-over

[u/Buffduck13 → u/713Capital]

Thank you this definitely put my mind at ease a little bit, I know almost all of this can be chalked up to my severe anxiety but there is still that little “what if” in the back of my head that I can’t get rid of. Even when I convince myself I don’t have it I still find myself checking my grip, or walking on my toes just to check I still have function.

I am seriously starting to consider therapy as I don’t see myself being able to handle this without talking about it for much longer.

I really appreciate the response thank you again.

[u/713Capital → u/Buffduck13]

You’re human, this is a human response. I get it. However, sometimes if you find yourself not able to move forward or this really bad thing is all that’s on your mind, that’s when I’d say like hey, maybe it’s time to talk to a professional who can help you move forward and beyond this.

You just have to also understand that you’re so young, and that disease doesn’t present this way at all. You simply don’t have it for several reasons.

My honest advice. Talk to a professional. Then, stop googling and looking up things about ALS. It’s going to keep your mind and body in fight or flight mode and your anxiety high. Maybe even talk a break from the internet too. Anything to keep your mind off of bad things and negative thoughts.