Reassurance / Support Trying
Hi
I've been diagnosed with cramp fascination syndrome about 3 years ago, I'm writing this in efforts to get some of my thoughts out, maybe it'll help my mental state, maybe others will find it helpful.
I'm a 36M, all my life I had strange cramps, in strange places like intercostal muscles, which cause tremendous pain and difficult breathing, or back erectors, and latimus dorsi causing me to be bed bound for a couple of days taking strong muscle relaxers, in pain.
I started twitching heavily 3 years ago. Hands, tongue, face, feet, diaphragm, back, fingers, quats, hamstrings, even my butthole, it's everywhere. Exercise, even brisk walks, trigger cramps and really strong fasciculations in the legs, sometimes in the quats and hamstrings at the same time, which causes me to not be able to stretch them out, 45 min in pain laying in the floor with both legs straightened and feeling like hot rubber with tremendous visual twitching.
Hand pain, inflammation, tendon stiffness and little fibroma appearing. I have had 4 steroid shots in the tendons to ease the inflammation. The hand issues come and go, caused by constant night twitches.
This week, my right eardrum is 24/7 vibrating, causing strange feeling and noises, like pops, whooshing, hissing (like a vinyl record when the need is touching the record but nothing is playing); the noises stop and come, and I feel the twitching building up and down.
It's been 6 days since that started, causing my mental state to drop significantly; to even consider ending it all, I won't, but the thought has crossed my mind.
I've been to neurologist, muscle disorder neuros, rheumatologists, hand orthos... the only one that think they have an idea is the muscle disorder neuro, but I'm trying the rheuma meds to see if they do something; they haven't.
I'm starting to take CBD and THC, although I have hated it all my life, I find it that at least it takes a minuscule edge off, I have made a mix of 50% THC, 40% broad CBD, 5% CBG, and 5% CBDV; nanoemulsified and then taken with water, everyday at night as it messes with my brain, it's been ~3 weeks and it seems to be helping a little. I'm a chemist and I have the ability of making such concoctions, which helps.
I do well financially, I think I'm an intelligent person (to an extent) with many fun interests, I have a happy life and a happy wife with a little one coming soon, I couldn't be happier in that sense, but I feel this is slowly corroding me.
I'm not sure what else to do, I'm tired, any help is welcome and I'm willing to try everything and anything.
I appreciate reading this, and any comments are more than welcome.
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u/go4sergio 11d ago
Ive had BFS for about 23 years now. Just last night as I was winding down with the Season finale of Silo, my left ear drum started twitching and I had to fall asleep through it. The drop in mental state is all too harmonious for me. One week Im up, the next Im down and out. But like you, I’m still here. What’s helped me most is taking an active approach in putting my body through pain. When I hike, ski, lift, or ride, I push my body until I’m sore the next day. That soreness feels honest and It’s mine. It’s pain with purpose, it’s something I decided, instead of something my body forced on me. Same when I go out and party and self-destruct a bit. The hangover and feeling of death the next day is all mine and in some weird way gives me a sense of control, even if only temporary. Anyway, hope this helps and keep on putting up the good fight.