BFS vent / rant
I am exhausted. Honestly exhausted. I have fibromyalgia and had extreme twitches in my lower back, buttocks, hips, thighs and ankles. Sometimes they’re so constant that I can’t even sit still without focusing on them. It feels like my body never fully relaxes anymore. Even when I’m trying to rest, there’s always something twitching, aching, burning, cramping, or buzzing somewhere.
The worst part is how mentally draining it becomes after a while. People hear “benign fasciculations” and think it’s no big deal, but living with it day after day is exhausting. Constantly feeling movement under your skin, especially in areas like the hips, glutes, thighs, and calves, makes it impossible to completely switch off. Some nights I barely sleep because the twitching ramps up the second I lie down. Other times I end up spiraling, wondering if I’m overreacting or if something worse is happening even though I’ve been reassured over and over again.
I’ve seen neurologists for years about it and they’ve consistently said it’s BFS and not something degenerative since there’s been no clinical weakness or progression, but that reassurance only goes so far when you’re actually the one living inside the body feeling all of this 24/7. Stress and anxiety definitely make it worse, but the symptoms themselves create more stress, so it turns into this horrible cycle that’s hard to escape from.
I think what frustrates me most is how invisible it all is. From the outside I probably look completely normal, but internally I feel like my nervous system is constantly firing off. Fibromyalgia on its own is already exhausting enough with the pain and fatigue, but adding widespread twitching on top of it just pushes me over the edge some days. I’m just tired. Tired of monitoring my body constantly, tired of Googling symptoms, tired of trying to convince myself I’m okay, and tired of feeling like my body never gives me a moment of peace.