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. Stretching also isn’t a bad thing but I don’t know that it is a major help. In lieu of that (cost, COVID, time, etc), simply walking or swimming or exercising seems to help.

Physical therapy is definitely an option.

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. At its worst it had me bed ridden for weeks and in tears thinking this was a terminal condition. The condition is mildly painful but more often than not just very irritating, disconcerting, and disruptive. I tolerate it quite well so we are not in a position yet to back off of that medication to experiment. Not sure if that is responsible for my improvement, or if it’s more just a time/healing thing, or a combination. Thankfully, my calves have cramped much less as of late.įWIW, my team has decided to treat me with gabapentin (4 months now). These aren’t textbook cramps that lock you up like a Charlie horse or toe cramp. There have been several days recently where walking long distances becomes difficult because of a feeling of knives in my thighs. It is my own theory that due to the tremors inside (micro fasciculations), the leg muscles are more tired than they otherwise would be. My thigh muscles are the most challenging now. Oh bad buzzing days, like today, I also get clinical fasciculations in the calves that are distinct “boom, boom, boom” pops of the muscles. I am FAR ahead of where I was in February, physically.

Personally, 6 months in now, about half the days I still wake with buzzing in my calves, globus in the throat, and tinnitus. The “good” news is that BFS isn’t something life threatening, but to call it “benign” is sometimes frustrating given the impact it has on daily life. It will likely be many years before it is better treated or controllable. Unfortunately, BFS is in its infancy of being understood by the medical community. Have you researched benign fasciculation syndrome? Check out the symptoms for that, and possibly you may align with them, like I did.Īfter having every test under the sun, and everything coming back “normal”, I finally received three separate neuro diagnoses of BFS with cramping.

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