Hello,

Happy to share.

The condition is mildly painful but more often than not just very irritating, disconcerting, and disruptive. At its worst it had me bed ridden for weeks and in tears thinking this was a terminal condition. Now, it sometimes has prevented me from continuing on a hike, or like last week, after walking 9 holes of golf, the last 9 I was in a lot of thigh pain and couldn’t really continue comfortably.

Physical therapy is definitely an option. In lieu of that (cost, COVID, time, etc), simply walking or swimming or exercising seems to help. Stretching also isn’t a bad thing but I don’t know that it is a major help. Bottom line is, the muscles are being used at high frequency low amplitude Fasciculation/tremors, so they do get more stiff more often, like if you ran 5 miles each day.

Testing wise, I had almost the full gamut. EMG, MRI, EEG, EEG in home, every blood test looming for muscle overuse, flags, virus, vitamin levels, thyroid, hormones, endoscopy (due to globus). Everything was “clean” and good.

The only tests I haven’t completed, due to COVID (and likely will not, at this point), are a skin punch biopsy (looking for SFN), a spinal MRI, a voltage gated potassium channel test, and a sleep study with EMG/EEG, looking for muscle movement during sleep.

The reality of BFS / CBFS is that there is no test to diagnose it. It is a diagnosis of exclusion. You test to rule out MS, ALS, PD, small cell lung, srojens, lime, Epstein bar, neuropathies, brain tumors, eosinophilic esophagitis (globus is common with BFS) etc etc. When all that looks fine, yet you still have muscle buzzing/vibrations, PERCEIVED (NOT clinical) loss of strength, soreness, tingling, globus, tinnitus, numbing of the tongue, and the myriad of craziness that comes with BFS, then you likely have BFS.

One similarity that people can often relate to, diagnosis wise, is Fibromyalgia. We don’t really have tests to pinpoint it yet, but given time and persistence in symptoms, it’s a diagnosis that can eventually be reached.

Not sure if this is allowed but hopefully it is...what helped me in a VERY big way was joining the reddit group for BFS. It was ASTONISHING how many people came there scared out of their minds (usually Dr. Google pointing people to think ALS). So many people posting the huge list of EXACT symptoms I had/have. Google will wreck your head if you start typing in things like tremors, weak feeling, etc. It is not a good path to go down, mentally. Instead, that group I found was a huge help in educating me and helping me have better conversations with my medical team.

One shocking trend I found in that group was that the large majority of people noticed the onset of symptoms after one of three things: bad viral infection, traumatic injury, or a highly stressful life event. For me, mine started after being walloped by a severe viral infection in December. My vibrations began in the weeks after starting to recover, and it all grew into the BFS situation I’ve had for 6 months now.

Happy to answer any other questions.

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