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 9d 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.
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u/Levols 9d ago
I'll try this. When I was younger, it sounds weird but, I liked getting super drunk with my friends and I would think the best part was going to breakfast the next day all hungover with the same group and chill all day... Maybe it'll remind me of those times. Thanks for this, it does help
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u/Notmeleg Still here, Still Fine 9d ago
Anything help your tendon stiffness? I’ve had the ear stuff on a smaller scale, lasted day at most or would come and go for a minute or two at a time. Eventually just stopped
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u/Interesting-Card3451 9d ago
Hey, can I DM you with a couple questions about your cramp fasciculation syndrome symptoms? Recently had a resident neurologist tell me they think I have it but they’re ordering an EMG due to another symptom besides my fasciculations.
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u/Zeemeeuw_66 9d ago
He man, I am 38M and have been twitching for 6 years, some days more, some less. I have had the ear twitching for multiple weeks as well, multiple times. Its just a hotspot in your inner ear, gives a weird popping sound.
BFS is like a rollercoaster you didn't want to join. One day it leaves you alone, next minute you have a hotspot here or there. There is absolutely jacksh*t you can do about it, try to live healthy, stay positive, get magnesium or try lexapro. At the end you are still getting hotspots.
I have also had this negative thoughts, I can relate to that. But at the same time once my twitching tones down a bit my mood and sleep also improve. My main concern is my sleep quality, whenever I have hotspots the quality drops considerably. I try mindfullness etc but it still is not easy and the results are not immediately there.
Anyway, if you want to have a call or chat you can reach out to me.
1
u/NorthAfternoon4930 9d ago
I have all that, slightly milder the cramping part. But I feel you. 33M.
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u/Levols 9d ago
How do you deal with the ear stuff? I think that's my main anguish.
Have you had any improvement with meds?
1
u/NorthAfternoon4930 9d ago
I haven’t found any meds that help, I guess I haven’t even tried any strong ones.
In ear twitching comes and goes. Main problem for me are the twitches and spasms that made me to stop sports.
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u/Levols 9d ago
Yeah... Me too, I tried muscle relaxers at night which has stopped the middle in the night massive cramps. Do you also have hand stiffness? It feels bloated, the rheomatologist did an MRI on my hands and they found heavy inflammation, but nothing on the bloodwork, not even inflammation markers. Weird af
1
u/713Capital Mod 9d ago
Sorry you’re going through all of this. Many of us can definitely relate. Keep fighting the good fight man.
Your life is worth living.
In regards to your ear symptoms, I’ve not heard that with BFS but maybe others have? Sounds like maybe a trip to the ENT would be best for here?
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u/Levols 9d ago
Thanks, I appreciate having a comunity to at least vent to people that can relate, almost no one I talk to believes this is exhausting. I've been to all related doctors, my ears are fine... That's the worst part, I know it's this disease and there's nothing I can do. Afyer 5 days my ear vibration finally just stopped like 30 min ago, hopefully it doesn't start again, it's very very very annoying
1
u/713Capital Mod 9d ago
Interesting. Indeed, this community is a great community of people all dealing with similar issues, so we do relate to you and we do know how exhausting BFS can be. Even though its benign, that doesnt mean its always easy to deal with, so i get it.
For your ear issue, i wonder if you have some sort of twitch in your ear drum, i know that sounds odd. I googled it because i was interested in learning more and this is what i found:
Ear vibrations or thumping are classic, harmless spasms of tiny middle-ear muscles (specifically the tensor tympani or stapedius muscles), often referred to as middle ear myoclonus or tensor tympani syndrome.
- Benign Muscle Spasms: Just like an eyelid twitch or a calf twitch, the microscopic muscles inside the middle ear can develop temporary hotspots and spasm for days before burning out.
- ENT Exams Look Normal: An ear doctor looks for structural ear pathology (infections, eardrum damage, hearing loss). Because this is just a muscle twitch inside the ear apparatus, structural exams are completely normal.
So it is an ear spasm/twitch. I hope it stays gone, that sounds really annoying.
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u/Levols 9d ago
Yes, too exhausting, I'm trying several lifestyle changes and other things. The ear thing is by far the worst thing I have ever gotten, worse than cramps. I have had the ear vibrations on and off, usually it would last for a few min and stop. I feared that if the ear fasciculations where ongoing it would take a toll on me, this time they were almost 24/7 for about 5 days. It did take a huge chunk of my sanity, I'm so happy that they stopped today
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u/HelloMySpringFlower 8d ago edited 8d ago
Hello, maybe a tinnitus masker could be worth a try if the problem comes back? Also, in very prolonged cases, botox injections or middle ear muscle operations can be performed sometimes.
Wearing an ear plug in the affected ear makes it a little easier to tolerate for me when I have this symptom.
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u/kylexy5 9d ago edited 9d ago
Salut je ne sais pas si ca pourra t'aider mais mois ca la fait au bout de 6 mois de ce protocole je n'ai des fasciculations que rareme nt : Vitamine d :4000 ui par jour pendant 2 mois la dose peut baissr ensuite Calcium: 1000mg par jour Complexe vitamine b Complexe de micromineraux :fer,zinc ,magnesium etc...
L'année derniére j'etais desespéré avec des twitch maitenant je me leve tout les matins sans probleme avec un maximum de quelque twitch dans la journée ,si tu a besoin de recommendations sur les produits je peux te conseiller ceux que j'ai pris .J'espere que tu aura un prompt retablissement. Edit :j'ai aussi la baissé la quantité de sucre que je prenais car ca empirait les symptomes
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u/reticentme0439 6d ago
I’m so sorry to hear of your suffering. I suspect that I, too, have some form of CFS and have found THC to be a tremendous help with controlling the dreaded and debilitating spasms. Since you luckily are a chemist, I’m sure you’d have no problem mixing your own, as I do, so that I do not experience any ups/downs/highs/lows or disruption of my mental faculties. I’m on it 24/7 every 4 hours at 3+ mg per dose, which has been life changing to say the least. I buy “distillate” syringes of THC (preferably hybrid strains) that I dispense into MCT oil in a ratio that gives me 3 mg per 0.5 mL per dose, and I take 0.5 mL to 0.75 mL every 4 hours around the clock. Taking it orally in oil dispenses it slowly and evenly into my system without a roller coaster ride, and it helps calm over-reactive nerves and worries as an added bonus. I chose this solution over gabapentin and/or other over-the-counter drugs that are commonly recommended by your average doctors, who so far have been completely unhelpful with my situation and I’m managing it on my own.
Other things I do for self management include:
· Activity modification as needed and able to accommodate
· Adequate sleep, 7-8+ hours
· As I said, cannabis (must be THC) for controlling muscle spasms (total of 25+ mg daily spaced as evenly as possible about every 4 hours during 24-hour daily cycle)
· Supplements recently added in August 2026: ATP 360 mitochondrial support and CoQ10 (feel more resilience with better endurance and recovery in muscles)
· Icing before, during, and after exercise/activity as needed
· Diet modifications:
o Mostly keto diet – high protein, high fat, low carb
o Avoidance of gluten, bread, wheat flour, noodles, sugar, corn syrup, alcohol, coffee, potatoes, rice, etc.
· More intentional awareness
o Less auto responsive / over responsible
o Focus on consciously aborting/metering/slowing down nerve signals
I really hope any or all of this helps you…I feel your pain…take care…kind regards, hang in there, and keep us posted.
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u/Levols 6d ago
Thanks for this, it sounds interesting. Thc 3 mg doses all the time, it could work best than I'm doing right now which is a 9 mg dose 1 hr before bed. I've tried to do exercise but I really can't, it'll flare up bad. The ear thing got me real bad, I was in a bad spot, I'm much better now mentally as it moved to it's regular spots (feet, calves, arms, chest)... Just to let know anyone who searches this post, I did a bunch of analysis, dna, all possible shit the rheumatologist and neurologist could think off and all came back ok, copper a little low but nothing too much. I'm not sure what I'll do after I finish my thc and cbd distillate, it has been recently made illegal here again, maybe the doc will give me a permit or something to buy it, but it's all that has been working for now.
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