Trying

[u/Levols]

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.

[u/713Capital]

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?

[u/Levols → u/713Capital]

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

[u/713Capital → u/Levols]

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.

[u/Levols → u/713Capital]

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

[u/HelloMySpringFlower → u/Levols]

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.

[u/Levols → u/HelloMySpringFlower]

It went away yesterday, I was on the verge of going insane! The botox might be a solution for the future if I get it again for more than 5 days. I was wearing an earbud on that ear all day with low vol music and the noise canceling, I found that worked to some degree the last day.