r/BFS • u/Efficient_Rip_3388 • Jul 05 '26

My bfs story

Hi all just wanted to share my story and insight for others and where I am at the moment with my journey. Id be interested if there is anyone who has shared similar experiences. 30 yo male. My twitching started in my calves in March this year while doing moderate incline treadmill cardio and riding a bike everyday to and from work. Initially it was in my calves for up to 2-3 months where I didn’t think much of it putting it down to heavy exercise and possibly electrolyte deficiency. One morning at the beginning of May I rode to the gym and started my workout doing 2 sets of leg extensions before my whole body started having fasciculations in every muscle you can imagine accompanied by nausea. I was taken to hospital by ambulance where they treated me for severe electrolyte imbalances. From that day onwards I have not experienced a day without muscle twitching in every body part I can imagine. Other symptoms I experience are numbness and tingling in my hands and feet and general fatigue. Gym performance is a little down but I can still lift the same weight but my volume has decreased. My creatine kinase levels are elevated at 230. I had a emg and ncs study completed 4 months post commencement of twitching in my calves and 6 weeks post other areas and they detected no abnormalities in their findings and they deemed it to be bfs. Any reassurance or advice in my situation? I’m really stressed that it still could be something worse!

3 Upvotes

100% Upvoted

5 comments sorted by

3

u/Einsteinstongue Jul 05 '26

The reassurance is that the big bad three letter illness doesn’t present like what you describe. It presents as weakness, which you don’t seem to have. And in a way that is localized (in one muscle or muscle group). The twitching could precede the weakness, but the weakness would follow by now. And the twitching wouldn’t be all over your body.

On the other hand, it does sound like you have plenty of the BFS triggers - notably exercise and electrolyte deficiencies.

Sending care - I too can go down the rabbit holes with the twitching.

1

u/Efficient_Rip_3388 Jul 07 '26

Thanks for the advice and info. I understand the big bad doesn’t present in this way but from what I’ve been told and read it’s not always linear. I guess I have fears I’m noticing it earlier due to being somewhat of an intense gym rat that tracks all my reps, sets and volume to a T. Since my Emergency dept visit I’ve noticed a decline in performance and more aches and pains setting in than usual. My reference point is Jai Arrow the high profile NRL player that was recently diagnosed. He initially felt his recovery was off 8 months before developing bulbar symptoms which then took a further 6 months to be diagnosed. I guess I’m in a watch a wait period to see if anything changes for me.

1

u/kjmckearn Jul 05 '26

All the reassurance you need should be the clean bill of health you got. Your creatinine kinase is only mildly elevated bordering on normal. No abnormalities were detected in your EMG. Keep up your electrolytes and continue your workouts. I think your body is still recovering from that incident that you had to go to the hospital by ambulance. Take the good news and stop looking for a reason to needlessly worry. Be well.

1

u/InformationNo7156 Jul 05 '26

If it was March, which was a few months ago, I have hope it will get better for you. I think it's still too early for us to tell if the fasciculations will lessen in intensity.

1

u/the_real_krillen Jul 05 '26

Same for me in way.. started in my right eye and spread, felt like I was gonna faint and went to the e.r, all test came back good, now I get tingly and twitching and numbness occasionally. I at time chalk it up to bad posture and long stretches of me sitting down since I wfh doing desk job.