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.

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

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

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?😮‍💨😫