View Full Version : ALS fear destroying me
I’m far into the rabbit hole. Have t dressed or showered or eaten in 2 days. Feels so hopeless. How Can I ever let this go?
My thigh twitches all night. I see people talking about their calves with BFS. Never their thighs. And never this long or persistent.
I’m terrified to go to sleep tonight and feel it again.
How do I move on? Can this really just be from stress???? I have no weakness or atrophy.
My thigh twitches all the time. I twitch all over. The other day I had a twitch in my bicep and I started to focus on it and it didn't quit for a week. As soon as I quit focusing it started to lessen and eventually stopped.
I know how you feel. I used to be deep in the rabbit hole too. You are doing the worst possible thing. Get out of the house and quit focusing. Start with a five minute walk and build from there. Anxiety and stress do cause twitches, but they also happen for no reason at all. If you have no weakness then they are benign. I know thats hard to accept, but its a fact. Quit looking for an explanation for the twitches, just accept that they are going to happen and that they mean you no harm. I still struggle with this sometimes and I have been at this for years, so I know that it is hard.
best of luck
Thank you for this. Tears in my eyes. This feels so lonely. It helps just to hear from others.
You are nowhere near alone. If you search this forum you will find literally thousands of people who have twitching related anxiety. I asked my GP about them last year and she immediately told me stories about her own twitching. It is something that happens to EVERYONE. We just notice it more and focus on it.
Get outside and try to get your mind of it, even for a few minutes. Keep adding time.
And by all means DO NOT research ALS or twitching on the internet. It will make things so much worse. If you need information or an opinion go see a doctor in person. NOT a neurologist, just your regular doc.
You got this. I know how awful it can be. It will get better, trust me.
Dude my calves thighs and ass twitch all the time. I just don't feel like typing it all lol. I wake up and within 3 to 5 minutes it's like popcorn. I don't even try to feel them when I'm trying to sleep because I'll be up all night counting them lol
How do I move on?
Every state in the US has mental heath help available. You can start by clicking HERE. (https://www.mentalhealth.gov)
Positive thoughts
oh dude, i have twitches all over and have been to some of the best drs in the country, my latest hotspot is my rectum, try having that one, make friends with the twitching and it will go away.
Thank you for this. Tears in my eyes. This feels so lonely. It helps just to hear from others.
So sad to read and yet I know JUST how you feel. You are not alone, I promise.
Have you read about Catherine? Here is the link just in case you missed it. Reading this made me feel SO MUCH less alone!
https://www.google.co.uk/amp/www.independent.co.uk/life-style/health-and-families/features/cyberchondria-the-perils-of-internet-self-diagnosis-1623649.html%3famp
I have....but never hurts to read it again.
I’m petrified that I will wake up again in the night with my muscle thumping away. Last night was the worst it’s ever been. It would not stop. Not once.
And I lay in bed alllllll night and worried.
tryingtosurvive1
06-12-17, 05:58
I am pretty sure people have twitched benignly absolutely everywhere. Please take a shower at least.
You are going to twitch. The thing is you don't need to fear it. It's harmless without clinical weakness. Stop anticipating and dreading twitches and just accept them for what they are fu@$ing annoying and harmless. Stop googling and reading horror stories and live. Sooooo many people on this forum twitch , so please realize that you are not alone. Therapy helps so do meds.
You're not alone, not by a long shot. About a year and a half ago I was basically you. I woke up one day with severe shoulder and arm pain and constant twitching on my arm and pectoral. The arm pain went away after a few weeks, likely just a back issue, but the twitching kept on going. At first I thought it was just interesting and made that fateful mistake of thinking, "hey, I should see what Google says about it". Biggest mistake I ever made, and that little Google search probably consumed a good year of my life with anxiety and depression and doctor visits and medical bills and tests, etc etc.
In the end it has been over a year and a half now and I'm still here. I still twitch, on my arms, my chest, my butt, and even my thighs just like you. I even started convincing myself I was developing weakness every time a muscle felt sore or I felt a little tired. It's a tough downward spiral, no doubt, and it took forever for me to climb out of it so I definitely feel your frustration.
Ultimately though there's a lot of reasons not to fear. For one thing, twitching is actually very common. BFS is a crazy common syndrome that you can have your whole life, or that just creeps up on you. There's also a great deal of other far less frightening possibilities like magnesium or vitamin B deficiencies, stress, anxiety, muscle fatigue, and many other possible causes.
Second, are the simple odds. The odds of getting ALS are basically less than one percent of one percent. It is exceedingly rare, and if you're under 40 the odds are even rarer yet. Heck, I actually read a study while I was going through this where the number of people who feared they had ALS drastically outnumbered those who actually had it. The fear of the disease is actually way more common than the disease itself.
And third, the presentation just isn't right. The twitching with ALS occurs after the muscle has already failed and is generally very fine, to the point you'd rarely even notice it. Twitching you flat out feel on a limb you're still able to use is not how it generally presents itself.
Trust me though, I recently went through exactly what you're dealing with and I have delved about as deep in this rabbit hole as one can go. I know it's scary as hell, trust me, I know all too well how scary it is. What I also know is that I basically lost a year of my life as a anxiety-filled recluse because of this fear and got buried in medical debt and I can definitely tell you it's not a road you want to go down, particularly given that it doesn't seem you really have anything to worry about. I know telling you not to worry is easier said than done, people told me the same thing, but know you're not alone.
Lol my thigh hasnt stopped twitching since May. Join a BFS group on FB. You'll meet thousands of people who twitch head to toe.
Where is the FB group? I’ve looked and can’t find one.
---------- Post added at 04:48 ---------- Previous post was at 04:47 ----------
This right here helped so much:
“There's also a great deal of other far less frightening possibilities like magnesium or vitamin B deficiencies, stress, anxiety, muscle fatigue, and many other possible causes.”
It’s so hard to find WHAT ELSE it could be. So thank you for this reminder.
PS, I showered today. Hooray.
Good for you! We all have to celebrate the little victories.
No weakness, no A**. That disease is about clinical weakness and twitching is more of a symptom of the dying muscle. If you could walk on your heels and tippytoe, raise your arm above your head you don't have A**. The more you worry the more your gonna twitch.
tryingtosurvive1
10-12-17, 01:58
I sought out three ALS stories by women in their 30s when I was worried about having it. Each one began with totally painless clinical weakness that they barely noticed until they started literally falling or dropping objects. Only later did they notice twitching.
My understanding is that the initial experience is that you think something is wrong with the world (your shoes, the carpet, etc). It's like the opposite of anxiety at first.
Captain irrational
10-12-17, 02:22
I’m far into the rabbit hole. Have t dressed or showered or eaten in 2 days. Feels so hopeless. How Can I ever let this go?
My thigh twitches all night. I see people talking about their calves with BFS. Never their thighs. And never this long or persistent.
I’m terrified to go to sleep tonight and feel it again.
How do I move on? Can this really just be from stress???? I have no weakness or atrophy.
Listen. I have an aunty who is currently undergoing a series of tests for something her doctors increasingly fear is ALS or a similar degenerative, neuro-muscular disease. Her symptoms right from the word go have been FAR more pronounced and severe than a few twitchy muscles. One of her legs literally doesn't work anymore and she can barely walk without aid, and now she is having serious problems with her balance.
Muscle twitches are very common and completely normal in almost everybody, and they should NOT be taken in and of themselves as a sign of anything dangerous. I myself get twitching leg muscles very frequently and have done all my life, and I can tell you for a fact the more I dwell upon these sensations, the worse they get. And they are also definitely more frequent when I am feeling stressed and anxious. But I'm still alive and still walking strong, so ultimately there is nothing physically wrong with me, and I guarantee there is nothing wrong with you either. You do NOT have ALS.
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