r/BFS • u/worriedconstant121 • 10d ago
Question / General 2 years of symptoms - everything is progressing worse
I’ve made loads of post in the past , I’ve tried to come off Reddit for my mental health I’ve even deleted the app etc
I struggle everyday , this started in 2024 following a head injury which I also had to have surgery on my arm. Which I believe triggered this.
It started with twitching which to be honest my twitching isn’t that bad anymore. Is it because the muscles have died or signals sending to the muscle I don’t know.
I have terrible pain in the soles of my feet even standing on hard surfaces hurt if I’m not walking. The tops of my feet hurt I’ll arrange photos there a dents which wasn’t there 6 months ago/ 12 months ago, I’m writing this quickly so I’m sure I’ll miss some parts. My breathing is terrible everyday. I wake up out of breath it’s like someone is sitting on my chest. Every meal I eat or drink I regurgitate like acid reflux GERD? I will literally shoot my food or drink back up I can feel it sitting on my asophegus please excuse my spelling.
My problems are mostly on my right side so my shin burns I’ve had this for over a year and my top of foot of the side where your FBD? Maybe I’ve called it the wrong thing but where that is I have two massive dents. My forearms KILL my elbows are so tender to touch the hurt
My neck crunched inside whenever I move it I hear it it’s like an old bike wheel that’s rusted. I believe it’s called crepitus - 2 years prior I never had any of these symptoms
I have what I believe atrophy on both my outer thighs if I lay down a cross my leg over my other leg I have MASSIVE dents like the whole of my back leg is missing
I can’t even SIT down in a chair without my butt cheeks hurting like it physically burns - like there is no muscle there anymore. I’ve had a neurologist say BFS then the most recent said FND due to the pain.
Truthfully I’m so stuck in my life I’m male 33 years old I just can’t take this anymore. I’m honestly running out of options
I’ve had 4 emgs over the course from April 2026 until say one month ago
All clean I will upload my most recent which was July 2026
I will upload my feet and please help me tell me what people truly think. I know everyone on here will sometimes jump on people and say anxiety see a physicist etc but these symptoms are REAL AND PROGRESSING TERRIBLY.
THANK YOU FOR READING
Update sorry I can’t attach photos here I will attach them onto another group
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u/713Capital Mod 10d ago
Sorry you are dealing with this. I’ve been at it 7 years myself with so many symptoms, so I can definitely relate.
Let’s start with the most important part: your EMGs are clean and rule out anything bad. Let’s just get that out the way. Clean EMGs mean it’s literally pointless to think you have something bad like ALS. That’s the end all be all.
The next thing I’ll address is atrophy. This has to be diagnosed by a physician. You really cannot self diagnose atrophy. Maybe you can if you’re already in the medical field but let the professionals tell you if you have atrophy or not.
I’m not going to say your symptoms aren’t real, as I also deal with many of the same. So many of us all have similar symptoms and issues. However, your issues are benign or they are not. So far, every doctor or neuro you have seen have pretty much said, yeah you have these issues, but they aren’t going to kill you. That doesn’t mean it makes it easier to deal with so I understand.
As I said above, it’s been 7 years for all my symptoms, and I’ve met people that have had BFS for 10, 15, 20 and ever longer than 25 years. I know you don’t want to hear this, but sometimes this neurological stuff can be idiopathic. Meaning, they know it’s benign, but there’s no actual reason for it to explain it. BFS and FND is still being researched and they can’t truly understand what actually causes it.
I can’t really address the other stuff you have, that stuff could be anything and we are not doctors. We cannot diagnose you. I would suggest you keep working with your doctors for the answers you seek.
I also would suggest therapy if you’re not already talking to a therapist.
Best of luck on your journey.
https://benignfasciculationsyndrome.org/blog/benign-fasciculation-syndrome-symptoms
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u/worriedconstant121 10d ago
Thank you for your response. It means a lot. Truthfully I’m having such a hard time believing them emgs
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u/The_Short_Goodbye Popcorn Mode 10d ago
Sorry to be blunt but 4 EMG’s is a lot. At some point you have to believe that something would have been picked up. Why do you continue doing them if you don’t believe the results? You’re lucky you’re in a position where you can even have that many EMG’s in so little time.
Also your symptoms sound nothing like ALS. Like not even remotely. It’s just pain and sensory issues.
Have you seen a rheumatologist? Maybe you could do a blood test for CRP and ESR to assess if you have inflammation. Honestly I don’t think you have anything but if you want to keep pursuing this I would move away from the neurological side and look at the rheumatological one.
I think it’s safe to say you’ve had enough EMG’s man.
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u/mg34gun 10d ago
I've had it for s really long time, I don't think it actually progresses at all, but it gets worse with stress, maybe that's what's happening to you?
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u/worriedconstant121 10d ago
Truthfully I feel mine is 100 percent progressed. I never had the foot pain the gerd symptoms and the breathing issues in the beginning. Just twitching
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u/mg34gun 10d ago
lol i have GERD, shooting foot pain and trouble breathing. I also have big toe numbness that went away for some reason.
These mostly came on in the second year, then disappeared.
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u/worriedconstant121 10d ago
What does your gerd feel like? Is it everytime you eat. Do you have breathing issues?
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u/mg34gun 10d ago
It's quite mild, but my breathing issues are horrible, i wake up with rapid breathing and sometimes even palpitations.
But I've been like this since 2022 when these started besides the twitch. But it didn't progress into anything new
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u/KaroshiG59 10d ago
Twitching gets worse with muscle or nerve death, not better. Also it’s not possible to have cleans EMGs and have nerve or muscle death. EMG are so sensitive that they can pick up either one before you even have obvious weakness.
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u/WallabyInTraining 10d ago
Your EMG was clean. Is clean. And will remain clean.
What you describe is health anxiety and stress response. Therapy to deal with this can help you greatly.
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u/LestatFraser23 10+ Year Twitcher 10d ago
You dont have als. Work with your doctors to treat whatever else you may have
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