Full-Body Jerks That Get Worse When I Think About Them

[zeralda19]

I am a 19yo female, and jerks is the best way to describe what I've had for the past several years. It's not a tremor or tremble except a bit in my hands, but more of sharp quick movements throughout my body that fade and then intensify everyday. I think an average person might experience the occasional weird sudden jerk out of nowhere in their arm or leg, that is the kind of jerk I will have in the same places, but it does not cease.

I am very frustrated as I had seen a neurologist for a few years (went from myoclonus to "idiopathic" chorea) and tried several medications that only slightly helped (like chlomazempan) but ended up giving me extreme mood swings (this was around age 13-15). I haven't been back to my neurologist since age 16 and am currently treating it with "dealing with it". The most frustrating thing about it is I believe some roots from anxiety but I don't think it's all of it either.

((This is the important part yall please read and tell me if it makes sense because it does not to me ----> )) I can be still and comfortable, and then I will realize "Wow I am sitting very still right now this is pleasant" and as soon as that thought enters my mind there is a slight lag and then it begins. It is not a debilitating or intense jerk, but it will restart and once I  am conscious of it I cannot stop it. Being close to someone even family physically brings it out more as I am always aware of it, always thinking about it. Nothing makes me sadder than my baby sister asking me why I keep jerking. It is best when I am distracted from it, but when I think of it, it gets amplified again. This screams "mental problem" to me like this is literally my brain triggering it, but I have been to a therapist for dealing with anxiety but I haven't found much help/figured anything out.

Examples--- went to dentist last week and if I thought about the dentist looking at me my jerks in my arms and legs would get worse, but if I was able to distract myself enough they would lessen((not go away- they only stop when I can be both comfortable and alone it seems)).

Sometimes I think I am staying  still/not jerking abnormally (relative for me), but someone will say "Are you alright?" "Why are you shaking?" and I will think "I didn't think I was doing too bad" but clearly it still shows to others.

When I was 5 or 6 I had a mouth habit or tic where I would open my mouth wide as if stretching it and then shut it, and I remember I was told I would grow out of it. It only lasted for about a year and I remember being told to stop thinking about it and that somehow worked. I know that sounds odd, however I remember having it as an uncontrollable habit like I can remember doing it many times frequently in spurts, but it somehow faded as a habit as quickly as it had appeared basically. Unsure if this could be correlated.


Typing this post is making it a little worse because I am thinking about it so much, and by worse I mean I am sitting on my bed and my legs are jerking a bit, as well as in my shoulders and upper arms. I am sorry for writing so much I am not even getting paid by the word, however I have yet to find any posts anywhere online that match both my weird kind of full body jerks/"sort-of" twitches  and the part where I can go from  minimum/no jerks to igniting it to start back up. I am constantly uncomfortable under my own skin, I feel like it's not even me controlling my own body due to these jerks.

Basically I do not know how I can be aware of the jerking and be unable to stop my own body from doing it. I hate the thought of living with this forever but I am so discouraged by the sheer feeling that there are few people who seem to have similar problems. Would love to hear anything from anyone, especially anyone who was brave enough to read all of this.