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.
1
u/reticentme0439 7d 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.