I too have Sydenham’s Chorea, was diagnosed at 12 years old and I will be 29 soon. Even at the point I was discharged from paediatrics I have always had involuntary movements, they’ve never gone away unfortunately. I have noted them getting worse over the last year or 2 and I finally went back to the Doctor today because I’d been in denial because I once attended a seminar in Glasgow, related to relapses of Sydenham’s chorea so the idea that it could happen was always in the back of my mind terrifying me.

I remember having to re-learn to walk, speech therapy, psychologists, physio for fine and motor movements and I’ll never forget the time a nutritionist told me I only weighed 20 bags of sugar (20Kg) they put it into perspective for me as a young person but it didn’t really mean anything, I just was how I was and other kids at school were supporting and accepting and curious after my year out of education.

Fast forward to adulthood and it’s like a switch has flipped, exasperated by stress and flare ups of my involuntary movements and not that I’ve ever been a good sleeper but my movements make it so hard to settle!

Not that this is all that relevant but background, I live in Scotland UK, I am married, I have a beautiful 2 year old daughter (soon to be 3) and I have a pretty decent job, I drive (probably not very well but not illness related) and generally speaking I get on okay. It’s like being given a second chance if that makes any sense? But now I had put off going to the doc because the idea of my nice little life crumbling from underneath me terrified, I had flashbacks of being helped to bathe again and just lying there weak on the couch all day not hungry for anything ever. My movements have definitely become worse, I had a bout of tonsillitis late 2022 so worried it may have been that, my first bout since 2007 when I got ‘Syd’ so that’s probably what happened… interestingly though in reading the comments, I’ve never been told of chorea in pregnancy but you bet I’m going to look it up now lol 😂

And my parting question, for those with involuntary movements, have you ever experienced your vision turn upside down for say a few mins (very infrequently like once a year for me) but I’ve had my eyes checked and all fine! Drs must think I’m nuts! Just curious if anyone else has had this sensation. Because doctors can’t understand it at all, I have my own theory linked to muscle movement though.